honkeyplonk

Some lasts....

2012-01-29T14:32:00.001-08:00

Today's been filled with mixed emotions as I've given Hope her last favourite foods. Her last roast dinner (as we know it), followed by chocolate brownie dessert with ice cream. Then this evening, a petit filous 'little dessert', and some finger of fudge. I'll miss her little concentrating on eating chocolate face. Hopefully it'll be worth it.

Happy 3rd birthday Honkey baby

2012-01-28T15:32:00.001-08:00

Happy birthday to my amazing, brave, inspirational, beautiful little girl!

I must admit, it's a relief to get to 3. There were times I've wondered ...

Many people have said in the approaching weeks 'wow, doesn't time fly'/ can't believe she's 3' etc. However, it feels very different from here. The tiny baby born 3 years ago, seems like a lifetime ago! So much has happened!

This is how our day rolled: as happened at Xmas, Hope became quite overwhelmed by the early morning present unwrapping. Jordan and max were great, taking it in turns to help her open her gifts, then making a big fuss of the gifts for her. They are amazing kids!

Since Hope got pretty much everything she needed for Xmas, there wasn't much left to get for her birthday. We got her a cd and tape player (yes we still have tapes! Hope can control them using her 'switches' whereas she can't with CDs ). A cd AND tape player, that was pink or purple was impossible to find, so we bought a nice shiny black one and decorated it with elmo stickers. We also got her some new books (she LOVES stories), and a leapfrog 'my pal violet' interactive puppy that we've programmed with her name, her favourite food (icecream) , her favourite colour (yellow) and favourite animal (giraffe) and favourite songs 'twinkle little star', 'if you're happy and you know it', 'wheels on the bus' and several more. It's a pretty cool toy! Though Hope rated pretty highly among her gifts.... A piece of ribbon (that was used to wrap). She properly played with it for ages.

Hope will be looking fabulous this spring/summer since we asked family and friends to buy clothes as she really didn't need anymore toys. I'm
Looking forward to her wearing all her new outfits. I find choosing Hope's clothes each day much more exciting than choosing my own.

Hope wouldn't appreciate a big party, so we pretty much spent the day indulging her in her favourite things; stories, songs, rolling on the floor, cuddles, listening to music, and a nice long-very -splashy-get the bathroom floor absolutely soaked- bath with mummy.

Of course we sang happy birthday and helped Hope blow out her candles on her cake. I was wishing very hard!!!

I feel blessed to have had Hope for 3 years, but I want so many more! It's not an easy, carefree life, but it's our life, and she is the centre of our universe. She's one tough cookie, who never ceases to amaze me how she bounces back, how she beams that amazing smile, how she is always learning and developing (in spite of the diagnosis). A lot of people could learn a lot from her! I know people do. I know she's taught me more than I'll ever be able to teach her. She's my little honkey hero.

She's doing a fine job of living up to her name! I just need to remind myself that sometimes.

Love u so much my honkey baby <3 xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

In, out, in , out..... (poorly again )

2011-12-08T04:10:00.001-08:00

Tuesday evening Hope was not a happy Honkey. Over a couple of hours her unhappiness increased. She became pale. Then she was sick. She's only been sick twice, both times a sign of an infection. Once being an ambulance job. So when she threw up again, and was becoming more and more distressed, we took her to hospital. I know that might seem an over reaction. I'd not rush dolly and moo to hospital if they'd been sick, but Hope is so fragile, and I'd rather we took her, prepared, than wait a few hours and need an ambulance.

Hope has 'open access' to the children's unit. She is considered by them as a 'frequent flyer'. Our favourite ward doctor G was there to meet us. She knows Hope well. She's also the only doctor that can get a line in Hope quickly. She did a great Job getting it in first time!

Hope's obs were fine. Sats 100, temp 35 (Normal for Hope). Her blood gases were fine. And her Lactate (our main marker) was good- 2.0. Hope was calmer and I felt reassured. So we discussed with G, the fact that she most likely is ok, and that the other blood labs wouldn't be back for a few hours, so it was agreed we could go home, with the canula in, and the community nurse would visit in the morning, and in the unlikely event that there were any issues with the other lab results, she would call us.

6 am the doctor rang to say her urea was sky high-11 (should be less than 6) so we were to go back in for fluids and follow up bloods.

Hope slept through the night. Woke for about half hour, then slept some more.

I managed to get about 150ml of dioralyte into her, and by the time we were back in, she had perked up a little bit. Her other bloods were normal, no sign of infection.
We were lucky that R heard she was on the ward and came up to see her. He said if her next urea came back above 8, she'd have to go on IV fluids for at least 24 hours. To my amazement it came down to 7.2 so we managed another lucky escape.

Though once home again I questioned whether we really should be. She wasn't her usual happy self. And in fact mainly slept and slept. But I've learnt from other families with PDCD kids that they all tend to sleep lots when they are poorly.

Today (Friday) started off with a nasty BIG seizure, but we rode it out, and thankfully by the five minute mark chris and I could tell it was going to pass. She slept another couple of hours, but by midday, was eating and drinking and rolling and very chatty. It's now 23.47, and she's just going off to sleep. That's more normal :0)
All just in time for her big sister's 12th birthday in the morning!

Spec-taculor!

2011-12-08T04:00:00.001-08:00

At her last opthamology appointment, it was felt that her visual awareness (Hope has cortical visual impairment) had improved greatly, so where she's always been long sighted, and previously they felt glasses wouldn't make much difference, now they wanted to give her the best opportunity to see.

According to the man in specsavers, it was 'quite a prescription' and they had to order the lenses in. We chose some little miss sunshine (perfect) frames, and picked them up a few days later.

As predicted by the optician, results with such strong prescriptions can be amazing. We envisioned Having to build up the time she spent wearing them, but once they were on, she just began looking around. We only take them off her to go to bed and have a bath, and then we feel like we are depriving her of her vision. Ok, so I know her vision is still far from perfect, but they've definitely made a difference. And they suit her so much. I think some people Really suit glasses, and Hope is definitely one of those people. She already looks odd without them.

(name of post attributed to Rachel Bass who commented 'spec-taculor' on a pic of Hope with her new glasses :0). )

Desperately seeking keto

2011-11-23T08:56:00.001-08:00

So knowing what we now know. The ketogenic diet that I've always wanted to try for Hope is one of the first courses of action. Unfortunately there's a 3 month waiting list in Oxford.

But knowing what we now know, I can't continue to feed Hope foods that are quite literally doing her harm :0(

I called our local dietician and explained, and said that I know she can't help us with the ketogenic diet (it's complicated and requires a hospital stay, starvation and very a careful monitoring in hospital, then lots of monitoring afterwards), but I can't continue to feed Hope the way we have been, so I'm going to start restricting carbs, and would really like to start the modified Atkins diet or a low GI diet (both of which can be started prior to the ketogenic diet if something needs doing ASAP, and don't require a hospital stay and aren't anywhere near as complicated. I asked for her advice and support. She declined!!! She doesn't 'believe in those type of diets for children'. Which is all very well... But Hope NEEDS a diet like this to maintain her health. I'm so angry at this dietician and I Hope our paths don't cross in the near future.

In desperation in turned to the Internet. Not even sure now what I was looking for.. Or how I came across it.. But I struck gold!! The Daisy Garland- a charity set up in memory of a little girl called Daisy, who had Dravet's syndrome, and died aged 6 from SUDEP (sudden unexpected death in epilepsy patients).In tears from reading Daisy's story, and my own distress, I called the number, not even really sure if or how They could help. It was Daisy's mummy who answered my call. Through my blubbering I think she understood my desperation, and said they might be able to help. The charity funds ketogenic dieticians in several hospitals. She felt that if we couldn't be seen by our local ketogenic centre (Oxford), we should be able to be seen sooner by one of their dieticians. Possibly in Derby or Nottingham, or maybe even Bristol. All I'd need is a referral from Hope's consultant.

......... (2 weeks later)................

Simple? Except this is the NHS we are taking about. All to do with funding. Swindon would rather we be seen by their partner hospital Oxford. Oxford were seeing what they could do- if Hope could be seen as an 'urgent' case. 2 weeks later I called (yesterday) to be told that Oxford has a 3 month waiting list, and to refer us to the Evelina @ guys hospital London. All this time waiting for people to refer.... Is time being wasted for my precious Honk, who needs to start this diet NOW.

The Evelina is far from convenient, London is not easy, but I would travel to the end of the Earth. But now, and we still haven't even been referred there!

The Oxford dietician rang today to tell me what I already knew (from chasing up yesterday). She said she hadn't realised the urgency of the situation and that I'd been waiting so long, but she does already have 10 children on her caseload (that's her maximum) and a long waiting list.

She told me to ring Swindon and get them to explain the urgency of the situation to Bristol. So I did. Straight away. To be told that the referral needs to come from Oxford. I think what this boils Down to, is whoever refers her, has to fund her. Different hospitals have pots, and no one seems to want to dip in their pot to get hope funded elsewhere.

So now I'm waiting again. I hope that the Oxford dietician has taken this case more seriously now. She seemed surprised by how much I knew. she was going to speak to her line manager... I don't know why. I'm hoping they are reconsidering. I hope she doesn't keep me waiting too long. I hate this waiting :0(

I have received continued support from Daisy's lovely mummy. She was kind enough to send me a DVD of a film made about the keto diet 'first do no harm', and some lovely daisy coin key rings, plus lots of information regarding the diet. She's also kindly offered to fund the gram scales (an essential item for the diet), and also a SATs monitor for Hope if I want one. As she pointed out, if she'd had one, her precious Daisy would still be here today. So if anyone is feeling charitable, and has a few pounds to spare, this really is a worthy charity. Or you can even donate without it costing you. By going through their site to amazon, amazon will donate to the Daisy Garland without it costing you a penny :0)

http://www.thedaisygarland.org.uk/

Xxx

Diagnosis!!!!!

2011-11-19T10:34:00.001-08:00

It was back in June Hope had the muscle biopsy, I'd almost given up asking if there were any results, and was happy to bury my head in the sand. Certainly for the remainder of this year. Get Xmas out of the way. But on Wednesday, I opened a letter, addressed to Hope's consultant R, detailing the results and asking for him to break the news. No need since we seem to have unintentionally have been copied into the letter . Oh well

Anyway, it's not good. And that's a serious understatement , but I'm writing this update quickly whilst I'm not feeling too heavy hearted. She has a neurodegenerative mitochondrial disorder. The same one that I've mentioned so many times. The one I feared. The one that I was led to believe had been ruled out already. But the one that she just ticked ALL the boxes to:
Pyruvate dehydrogenase complex deficiency (PDCD). It's bleak. But she's here. She's doing ok. There's no cure. But 'therapeutic' options have been suggested.

Ironically the main one being the ketogenic diet! The same diet I've been asking her consultant about since she was one. The same diet, that after constant nagging on my part, her consultant finally agreed to referring us to the specialist in Oxford to discuss (his reluctance was based on how well hope has been doing without it). Fortunately I'm
Well armed with knowledge, I've bought the 5th edition of the ketogenic diet medical book and read and highlighted already.
Unfortunately my curiosity over the last 2 years has led me know too much about this disorder. But already I've gained a bit more positivity from a support group for parents of PDCD kids. I'm inspired by a little girl L and her mum. L is 9!
Her mum has fought hard to keep her. So will I!

She's called Hope for a reason. I won't let go!!!!!! I can't :"(

Acidotic

2011-08-29T07:36:00.000-07:00

Acidotic

After her clean bill of health on the Friday, we had a few lovely days camping in weymouth. Hope was happy and well apart from teething a little. After being home for 2 days on the Wednesday we were just having a quiet day catching up on washing. About 11am, Hope started screaming. We gave her calpol and she remained inconsolable. Her feet were twitching like they were after the pool fiasco. An hour later, I rang the childrens unit to say I was bringing her in to be checked over. I told them I couldn't put my finger on what was wrong, but something was. I was hoping that we'd be sent away, having over-reacted. I was wrong. She was acidotic!!! Her blood was too acidic. And dehydrated. So she was admitted again. She was on iv fluids for 24 hours and was still too dry so they upped the fluids.

The second morning, the consultant on the ward rounds was dr Z. I've mentioned him before. He used to be her consultant. I thought about refusing to see him. He recognised Her, but obviously couldn't remember her from over 2 years ago. So when he said 'haven't I seen you before?' I was able to get something well overdue off my chest. 'yes' I replied. 'you were her consultant, and when she began fitting at 3 months old, you didn't believe me. I kept asking for an EEG, and you told me you thought she had colic. As it turns out, by the time she was seem by Ravi, she was in a constant state of epilepsy!' all that said in front of 2 SHOs and a nurse. remember us now? I'm sure you'll not make that mistake again! And I felt better for saying it :0) naughty me I know. But I do tend to hold grudges!

Ravi came to see Hope later that day, ....

Again I didn't finish this post and now can't even remember what Ravi said. What I can remember is we went home. Then yo-yo-ed back in and out a further 2 times. Apart from giving her IVs, there's not a lot that can be done for these new problems. Her blood work is all over the place: high urea, teetering on and off being acidic,high platelets... And a baffled consultant. So along with the previous aspiration pneumonia, and now the increasing need for extra fluids, the ball is rolling for a gastrostomy (feeding tube into the tummy).
And this last part broke my heart .. .Ravi's words 'this may just be the next stage of things :0(

We were discharged knowing her blood work wasn't as it should be, but knowing that she cannot spend her life in hospital in IVs.

She seems ok. Most of the time. I think. But it's nerve racking! We now have a hospital bag packed. Ready to go if we should need to. But touch woos, since I packed it, we've not needed it. We've actually done 9 days now without bring admitted. She's back in on wednesday for a check up, to see what her bloods are doing a rest dose of bucal midazolam (since she reacted so badly to the rectal diazepam)

Not the best summer! Far from it!

The 'P' word

2011-08-12T11:19:00.000-07:00

The P word (aspiration pneumonia)

In my last post I did really skim over the fact that Hope had had a diagnostic skin and muscle biopsy, and following that, had been hospitalised with a nasty chest infection. It was only after she was better that the P word was mentioned. That it might have been a lucky scrape with it. I was glad that I didn't know, that that's what they were thinking! So after 3 days in hospital, IV fluids and anti biotics, Hope was well and home again. We had a week of our usual busy schedule off therapies etc, but I decided she was well enough, and would love to go for a Honkey splash at the hydrotherapy pool session with her other special friends. Hope absolutely LOVES swimming! She goes crazy!!! And has recently even began to 'swim' (staying afloat and moving through the water in her own style).
But half hour into the lesson, hope became distressed. This NEVER happens when she's swimming. I took her to the side of the pool to calm her and see what was wrong, and then I can't really explain what happened cause it all happened so fast...but she kinda went limp and changed colour. I knew something was wrong so got out fast! Then she was fitting (? but not her normal type- lots of twitching in her legs and her feet were going crazy, and during this hope was screaming and looking at me to help. It was awful!!!

And my nightmare was made worse by the fact that on this occasion, stupidly, I'd left my mobile and her rectal diazepam (epilepsy rescue medicine) in the car. So I had to quickly get dressed (I didn't dry myself!), so I could get help. As time went on, I realised I probably shouldn't even give her the rectal diazepam as this was a different kind of fit, and also because of her change of colour. So the school first aider called for an ambulance. Hope vomited (something else that's very rare for her- last time she did was a 999 job too). By the time the ambulance arrived, the nasty fit seemed to be over, but she was still very distressed and twitchy (with most likely left over epileptic activity). So off we went in the ambulance.

Hope was still very distressed once we arrived, so was taken to the paediatric resuscitation bay (not that she needed it at the time, just they have more than the basic equipment there). So she was wired up to heart monitors, sats machine etc.

Her lactate level was 6.8- ridiculously high, and another honkey record breaker. Bearing in mind the chest infection the week before, she had a chest xray done in resus, which confirmed pneumonia. So the doctors planned out the course if treatment; IV fluids and antibiotics and arranged for her to go up to the ward. But whilst waiting for the arrangements to be made, Hope began fitting again. Nothing spectacular, not like earlier, but strong jerks, so the doctor decided after three and a half minutes to treat with rectal diazepam. As before (Hope's only had it in hospital, this being just the second time) Hope initially seemed to be quite enjoying it's effects and looked high as a kite!!! The fit still lasted about ten minutes, then she rolled around spaced out for another ten minutes or so, then she zonked! Proper sparko fast asleep! Then her Sats dropped!! So she needed oxygen to bring them back up. But then they dropped, and continued dropping even with the oxygen! Scary scary stuff watching the numbers going down and the docs looking to eachother, moving around quickly and efficiently. Then they were giving her an airway and manually bagging her. The help having her airway open seemed to do the trick and eventually she was able to Cope on oxygen. So this postponed our trip to the ward for several hours, and when we eventually made it up 5 or so hours after we first arrived, it took a team of doctors and a nurse to get her and all the monitoring equipment up to the ward.

The next few days were really a blur of stress with just being there in hospital, stress with canulas that kept not working, then doctors struggling to get new ones in, 12 hourly bloods to monitor her lactate, infection rates etc.

I've lost track of days, but I'm certain she was admitted on the Friday, and let home on the Tuesday evening ( though not discharged as she was to return daily for IV and IM (intramuscular) antibiotics and bloods.

We were told that the pneumonia was mostly likely caused by the general anaesthetic for her skin and muscle biopsy. The theory being that the GA caused muscle weakness, leading to Hope aspirating on food/drink, leading to the infection, and building up to 'aspiration pneumonia'. It's really hard to accept this, though I know it's right. She was fine previously. Pretty much. Though in hindsight she had given me a scare a few weeks earlier with her breathing after swimming.

Though the infection was clearing up, this was thought to be a 'chronic' as in a long term condition, that may take weeks/months to shift. Possibly leaving her lungs, in a new, not so great condition. So before we left, I was trained to do chest physio, to try to shift some of the secretions, shown how to suction her secretions with a machine (that we now have one of at home). Because of her issues with her hydration and lactate, it was agreed that Hope needed extra fluids via an NG tube, so we were also trained on that.
She was also prescribed a 'patch' to wear behind her ear to reduce the secretions.
I was heavy hearted about the chronic condition, and really feeling like we were on a very slippery slope.
Though very glad to be going home after her longest admission. And just in time for Dolly and Max's sports day.

(just realised I never got round to completing this post, so will gloss over whAt I can remember- it's been a mad few weeks. And not in a good way!)

We made sports day. The next day she went back in for bloods and got admitted for high lactAte again. Then diScharged a day later.
Our life for the following two weeks ish, evolved around giving meds, tons of fluid via the NG tube, dealing with NG tube problems such as it getting blocked, Hope coughing it up etc, along with every few days having blood tests to check her CRP (infection rate) , platelets (which were far too high) and lactAte to name but a few. I've become quite the expert now. And we feel too much at home at the hospitAl. We also came under the community nursing team (as lovely as they all are, I saw this as a step in the wrong direction for us), and took delivery of and received training on a suction machine.
The patch dried up Her secretions on her chest (but they increased her seizures so we had to stop using them) her lactate settled (or rather we settled with a 4 as being good enough), her platelets were slowly coming down, and her CRP was less than 1. She'd won! She bloody well fought off nasty ol' pneumonia, and she beat it! And as for it being chronic.. And me trying to come to terms with Hope's new chest state and noises... A miracle must have occurred, because 3 weeks from the pool episode, Ravi (her amazing consultant) listened to her perfectly clear chest, and based on this final set of bloods, gave us a clear bill of health. As clear as we are ever going to get anyway ! WAY TO GO HONKEY!!! <3
Xxx

Hope- a snapshot

2011-07-04T12:36:00.000-07:00

There's lots I could and should update about the last couple of weeks, but just thinking about it makes me tired. In short, Hope has had a skin and muscle biopsy in the hope we get get some answers (or not) about her condition. Shortly after this Hope was very poorly and was admitted to hospital with very high lactate (5.8 :""( ) it seems she's been aspirating and aquired a chest infection, though at one point suspected pnuemonia! She needed IV fluids, antibiotics and even oxygen (she's never needed that before). She's home now, but not her usual happy self and I'm sad and worried about her.

Anyway, unbelievibly (to me lol) she's due to start nursery in September. So I've been finishing off my parental contribution to her statement this evening, and I thought it provided a nice snapshot of where Hope is upto these days. It also perhaps shows me as a neurotic, fussy, overprotective, over anxious parent. Oh well :O)

My Child's early years

We were aware that Hope may have some kind of disability, before she was born, based on brain abnormalities picked up on scans. She spent a short time in special care due to her low birth weight and for observations to be made.

Hope left hospital at one week old, and seemed to be developing 'normally' until she began having fits. This was initially misunderstood by her consultant, and by the time epilepsy was diagnosed, Hope was in a constant state of epileptic activity. She'd lost all previously gained motor skills, all of her little personality and even her sight.

Hope began epilepsy medication, and though this gained some control over the fits, the medication left Hope very drowsy for a long time. Hope is much more accustomed to the medication now, and gradually overtime her personality came back. She still has seizures most days, but they are much better controlled. A lumbar puncture carried out at 6 months of age, suggested that Hope may have a mitochondrial disorder. Hope is now being seen at the John Radcliffe and we are awaiting results from a skin and muscle biopsy.

Though I'm aware that Hope is extremely behind in her development, she never ceases to amaze me. She works very hard to gain new skills, and each little new thing she learns is a huge triumph for us both.

Hope is seen and supported by many. These include her consultant, Dr Chinthapalli, her epilepsy nurse, her physiotherapist, occupational therapists, her portage teacher and koala’s key worker.
Hope has been attending koalas since she was less than one year old (I am sorry I can’t recall), and having portage at home since March 2010.

What is your child like now?

General health

Hope has epilepsy that is kept quite well controlled by vigabatrin. She's currently on 900mg twice daily (given in yogurt) but this dosage is based on her weight and seizure activity, so changes regularly. Hope also has a rescue remedy of rectal diazepam.

She's generally quite well, though recently she's had a succession of chest/throat infections. Hope can become dehydrated (she's not a big fan of drinking, and even less so if she's poorly) and due to the nature of her possible mitochondrial disorder (high lactate) it's important for her to be well hydrated. Therefore it’s important to observe her fluid intake, plus watch out for signs of dehydration. And if it's suspected she needs to be admitted to hospital for IV fluids.

Hope does suffer with constipation. She is currently having half a sachet of movicol in the morning. But we also use a pessary if necessary.

Most recently, Hope has undergone a general anaesthetic for a skin and muscle biopsy (on her leg) at the John Radcliffe. We hope that the results from this may shed a little more light on Hope's condition.
Following this surgery, Hope was admitted to the GWH. She'd remained very sleepy and had been aspirating and her lactate levels had become very high. She needed Oxygen, IV fluids and antibiotics.

Physical skills
Hope can roll, though sometimes gets an arm stuck. She can lie on her tummy and raise her head for a few minutes at a time (if she’s in a good mood and has something she likes to distract her). She has good head control. She is now able to sit by putting weight through her arms, though she's still quite wobbly. She can on a good day sit for a couple of minutes, though lacks the skills to save herself when falling. However, recently I've witnessed that she's making an attempt to.
With the support of a person, and/or a therapy ball, plus her splints Hope can stand.

Hope can grasp objects of interest to her, and will pass from her left hand to her right.
She uses both hands to operate switch adapted toys/ communication devices.

Self help
Hope needs to be dressed and undressed. She will attempt to help by pulling or pushing her arms through sleeves.

Hope needs to be fed. She manages a mashed consistency of food, and can also eat certain whole foods eg. sandwiches, soft fruits etc

Hope wears Nappies.

Hope doesn't mind her teeth being brushed. I count very slowly from 1-10 for the bottom teeth, then repeat on the top teeth.

Hope has very curly, difficult to brush hair. It's best to tease knots out which she's in the bath and has conditioner on.

Hope needs to have her face and body washed, and also her nose to be wiped. Counting slowly to ten will reduce her stress.

Communication
Hope has a repertoire of 5-6 words. Sometimes she uses them appropriately and consistently, but not always.
Hope is a very sociable person, and is attentive when being spoken to. She will turn take and make vocalisations, and very occasionally imitate. Now that Hope's vision is improving, she will sometimes make eye contact, though often this is brief.
I believe Hope understands a few words. She's able to make choices of people, favourite toys and favourite books. Given choices, hope will give a clear response, either by a vocalisation, or a very big clear smile
Hope is able to express her desire to have a change of position/scenery/activity by saying 'OU..' (out). This is made clearer by her use of body language, whereby she will kind of arch her back ready to be lifted.

Playing and learning
Hope's favourite toys are: story time bear, Elmo, pom poms, crinkly foil and fluffies (soft material). She also enjoys playing with her switch activated toys.
She doesn't really play with other children, but loves being played with by her siblings. She enjoys being tickled and also enjoys wrestling with her brother.

Hope has a few stories that she really enjoys. These tend to be books that have noisy buttons, or are feely books.

Hope enjoys going in swings and on bouncy castles.

Hope isn't occupied by television, but she does really enjoy listening to music, especially children’s songs and nursery rhymes. She loves being sung to. Especially rhymes that have actions e.g. ‘Tommy thumb’, or ‘round and round the garden.’ ‘Twinkle twinkle little star’ will calm her if she's upset.

Hopes all time favourite Activity is doing 'row row the boat'. She likes to sit on a lap and hold hands and rock forwards and backwards. Sometimes she will initiate this by rocking when on a lap, or by saying (what we think is) 'row'. Hope knows 7 verses to this song though, and will become frustrated if the person singing it doesn't do her full version.

Relationships

Hope is very much a mummy's girl, as we are very rarely separated. If she's unhappy or poorly she needs a cuddle from mummy. She has a lovely relationship with her Daddy and enjoys playing, talking and relaxing together in the evenings.
Hope has a wonderful relationship with her siblings. She gets excited when they interact with her, and has a very special and unique relationship with each of them, each of them bringing out different aspects of her personality and different behaviours. Hope also has good relationships with her portage teacher, koala’s teacher and her rainbow trust support worker. She doesn't seem to be wary of strangers, but isn't as sociable with people she doesn't know. She tends to have a sense for therapists and doctors, of whom she's least happy with.

Behaviour at home

Hope is quite demanding in attention. She's not able to really entertain herself, so requires attention. She's used to having attention all the time, and becomes upset if she's left unattended. Hope has quite a short attention span (even with her favourite toys ten minutes maximum) and will show that she's bored by whinging. She doesn't like to stay in one place for long either, so moves between various chairs, laps, floor, standing frame etc.
Hope is very affectionate, and loves to be kissed and cuddled. She will really snuggle in for a cuddle if that's what she wants. If she's tired, she will become grumpy and need a cuddle and her dummy.

At preschool/ nursery
Hope enjoys the time she spends at koalas. She has a lovely relationship
with her key worker, and isn't upset if I'm out of the room. Hope enjoys many activities here, including messy/sensory play, water play, and painting (with her hands and full adult support). She enjoys playing in the garden on the swings and trampoline. She really enjoys going into the sensory room and using the switch activated lights/sounds. Hope does interact with some of the children- usually when they are in a very close proximity.

My general views

How do you compare your child with others of the same age?

I am aware that Hope is very delayed, and much more like a young baby- though in different areas of development this varies as to how far off she actually is of her chronological age.

What is your child good at or what does she enjoy doing?

Hope is having lots of success with switch activated toys and communication devices, and I see this as a strength and something that I want to continue with, as she's enjoying the control, and I see that it has a massive potential for the future of her learning and communication.
Hope enjoys playing with these.

She enjoys stories, music and nursery rhymes. Hope also enjoys rolling around on the floor, and playing with crinkly foil, pom poms and fluffies.

Hope loves water! She loves having a bath or shower, and loves swimming. She becomes very happy and active in the water, and is now able to stay afloat and kick her legs when she has armbands on. She has achieved ducklings’ stage one in her hydrotherapy class.

What does your child worry about?

Hope's only worries as far as I'm aware, are being left on her own.

My worries

Hope being left unattended- even sleeping I don't leave her as she's most likely to have seizures upon waking.

I'm worried about Hope's epilepsy care plan, which I think needs reviewing, but my main concern is that maternal instinct tells me when rectal diazepam needs to be given or an ambulance called.

My biggest concern is Hope's seizures (which can be very subtle) going unnoticed. I need to know the length and regularity and strength of them, so I know if it needs treating, or her meds need increasing,

I'm worried about Hope sleeping too much at school- this can be a sign of high lactate

I'm worried about her aspirating, which is something she's only recently began doing

I'm worried about her feeding. I'm the only person that ever feeds Hope. I know how to feed her, how to place the food in her mouth, when it's getting stuck on her high palate and when it needs fishing out.

I'm worried that Hope will be unhappy in her school seating. She's been very fussy with postural seating, and she's going to have a new unfamiliar chair (still undecided). Also she doesn't like to spend much time in any position.

I'm sad that Hope will be unable to tell me what's happened at school each day.

I'm worried that all of the ways in which Hope communicates can't actually be translated onto paper, but can only be learnt by spending time with her and myself so that I can translate her needs.

I'm concerned about Hope's splints (orthotics), which she'd ideally be wearing to nursery. But we have ongoing issues with them, and she regularly manages to slip her heel out of position and this rubs and causes her discomfort. They need to be checked and put back on several times a day. Putting them on is a tricky procedure in itself!

I'm very concerned about leaving Hope. I didn't let her out of my sight until she was 18 months old. I've only ever left her with her Daddy, and her rainbow trust support worker, and yet it seems I'm expected in September to leave her with virtual strangers after just a couple of half hour visits. Which I won't be! I think going to nursery would benefit both Hope and myself, but this will happen, only if I feel comfortable with leaving her, knowing that the teacher and staff know her well enough.

My child’s special educational needs

I believe that Hope will need one to one support with someone who knows her well. She will need to have a structured individualised plan to take into account all of her needs; socially, emotionally, along with physiotherapy and developing fine motor skills, which will take into account her disabilities and her visual impairment. A clear epilepsy plan will need to be in place. Hope will also need appropriate seating that she is happy with.

I believe these needs can be best met by Brimble Hill School. I believe a slow phased transfer of knowledge about Hope (from me to the staff at the school) will allow for a smooth transition.

Therefore I’d like to have much more contact with the school and the staff before I feel ready to leave her there without me. I am pleased the school have agreed for her siblings to have a visit, so they can see why I have chosen this school over their school. However, I feel that the school are reluctant for me to spend much time there other than a couple of half hour sessions. As I have said previously, I will not be leaving Hope there until I feel they know and understand her well enough. I am aware that Hope is not required to start her formal education for quite some years, and I am prepared to postpone this if necessary.

Dear Tesco II

2011-06-17T04:05:00.001-07:00

Dear Tesco
After just leaving your store in tears, feeling frustrated and discriminated, I am writing to you today to inform you if my intention to contact both the local and national press.
Despite my pleas to you since November to provide a suitable trolley for my disabled daughter, and despite numerous members of your staff taking on board my requests and promising to deal with the situation (both in store and from customer services) I still find myself more than six months on struggling to carry out my shopping.

After giving up on in store staff who made promises, I wrote to yourselves at the start of may. My letter to yourselves can be seen on my daughters blog. Www.honkeyplonk.blogspot.com (2nd or 3rd post down). Upon receipt of this, I did receive a call from someone called Rachel (?) who apologised profusely, and assured me she was on the case, and that she'd call me back by the end of the week. I'm no longer surprised by the fact she never called back.

Your disregard for mine and my daughters needs, in my opinion amounts to discrimination. Fortunately for you, my daughter is going into hospital on Monday, so I am unable to get the press ball rolling, but I assure you, it will be at the top of my to do list upon her discharge (hopefully Tuesday or Wednesday).

Yours sincerely
Caroline Matthews

A demanding 2 year old in Cornwall :O)

2011-06-04T15:09:00.000-07:00

Time for an update since I have a few hours on my hands on the homeward bound 
trip from Perranporth.

We've had a gorgeous week, and been blessed with beautiful weather. Perranporth 
is without doubt my favourite beach in the Uk. Shame it's a good four hours away 
(or 7 on the way here due to traffic). The sand is like powder, and beautiful 
blue sea, with great waves for the kids to go boating and body boarding in. And 
the ice cream and pasties are the best in the universe! But there's nothing 
quite like sitting outside the bar on the beach in the evening watching the sun 
go down whilst listening to a live band over a plate of nachos. It's one of  
those 'life is great' feelings. 

This Holiday has been wonderful, but it's also been a time of realisation. 
Realisation that when you have a disabled child- some places are just off 
limits!! We've alwAys wanted to go to St Ives- but a drive through and just 
looking to park told us it wasn't gonna happen. The same day we tried Hayle, and 
just the nature of the coastline being so steep with rocky un-wheelchair 
friendly meant that this, along with Perran sands beaches were also off limits. 
But I guess that's just all part and parcel of it. We'd come this way again. We 
had a day at Newquay which was lovely, and Perranporth is lovely enough to just 
go there. Or perhaps we'll do some research next time.

Hope doesn't seem
To like holidays as much as we all do. She liked feeling her feet in the sand, 
though not the sea. She did some good sitting on the beach too.  She certainly 
enjoyed her daily 'ice cream o clock'. And she definitely seemed to like 
sleeping in the bed with me and chris all week (there wasnt room for a cot in 
our room, and im not ready to not have her right next to me all night). 
But she's not that good at just relaxing. She seemed to miss the constant 
attention and stimulation. I even found myself doing her Brainwave exercises on 
the beach just to try to wear her out. 

A word that was 'emerging' before we came away, is now well and truly in Hope's 
repertoire. 'OUt'. As in 'OUt' of my wheels, 'OUt' of my chair. 'OUt' of my 
carseat. She's been very demanding!!! 
Fab though. It's such a big thing that she can tell us that she's had enough. A 
little tiring two hours into the journey home :0)

Dear Tesco. Is it really too much to ask...

2011-05-02T15:02:00.001-07:00

Dear Tesco

Is it really too much to ask...
For a trolley??? Like most of your regular customers, I spend between £600-£800 per month on groceries in your shop. Yet because I have a disabled child shopping is far from easy. Admittedly, shopping with a 2 and a bit year old, is never an easy task. But when your child is unable to race around the aisles, or is unable to physically sit in the trolleys, things become even harder. Until a few months ago, I'd put my nearly 2 year old daughter in the reclining baby seat type of trollies. But obviously these have weight limits, and my daughter reached this limit. Her legs were dangling over the edge of the trolley.

So now, my option is to push my daughter in her wheelchair around the shop with one hand, whilst struggling with a heavy basket with another hand. This means several trips a week, which I have to fit in around the various therapy and hospital appointments. This also means that on the weekend, after a week at work, my husband has to brave the aisles.

In November, I approached customer services with my dilemma. Knowing that a 'special' trolley would benefit not just me, but lots of families and their children in swindon. Back then, it seemed simple. A trolley would be ordered and arrive within 6 weeks. 6 weeks came and went, but taking into consideration December, I waited until February before asking again. At this point I met with a duty manager 'B' who said she had worked in other stores where there were trolleys, so she'd try and get one from there, plus order a new special trolley from head office. She took my number and said she'd be in touch. February, march ... April... Nothing!
So back to the store I go. I ask to speak to 'B', who is unavailable, so a male duty manager comes down. I explain the situation. He radios to 'B', then feeds me what I now know to be the biggest cock and bull story ever!! Apparently, there are no spare special trolleys ANYWHERE. Infact, they aren't even available to order anymore. They are in the process of designing one!! BS!!!

Feeling frustrated, I contact head office myself. Something I should have probably done at the start. On the same day, I had a call from the store manager 'S'.

He apologised for everything that had happened previously, and assured me that he had now ordered a special trolley. That it would arrive in store within 21 days, but in the mean time, he'd managed to get hold of one on loan from another store. Though he wasn't sure how he was going to get it to Swindon yet. But he'd of course let me know when it was in store. So I left it a week, nothing.. So I popped In and asked to see 'S'. He was available but 'B' was. Knowing she'd fobbed me off previously, she fed me more BS about how she'd not forgotten, was onto it, etc. And no, the loan trolley still wasn't in, but she'd let me know when it was. Still nothing!

With Hope being unwell the past few weeks, my focus upon this had slipped. But when I was leaving Tesco on thursday, I saw it. And what I saw was completely unsuitable! I know it's the one, as it's as described I suppose. But really it's so completely useless to us. It's really much more suited to a large perhaps autistic spectrum child. Or a large child who at least has control of it's head and trunk. It was basically a blue plastic almost school-chair like. Ok, it'll probably suit someone. But we are still no closer, to what is beginning to seem like the impossible.

Ok, yes Tesco, I could do my shopping online. Thanks for the other offer, to have someone assist me round the shop. But you know what? We are excluded from 'normal' enough. I'd just like to be able to do my shopping without it being a big deal.

Yours sincerely
Caroline

No more doctors now please!

2011-04-14T05:06:00.001-07:00

It was getting pretty insane last night waiting for her too pee; we were trying to get her to drink all day, but with little success. We resorted to jellies. We were obsessively checking her nappy. we tried; sitting up, laying down, going for fresh air in her pram, then it got desperate, Chris had her sat next to a running tap, I was trying to massage her tummy and put pressure of her bladder, one nurse suggested blowing on her down below- then me and a nurse and Chris were all blowing!! Hilarious and crazy!
It got so we weren't even checking, we just had her nappy off, with the catchy thing attached to Hope, and we were watching, pleading for her to pee. One older nurse came and suggested splashing her with water, then said she'd try a joke to make her laugh first. I can't even remember what she said to Hope, but not long after she started talking, the bag was filling with yellow! There were claps and cheers all round! We finally left about 6:30.

We were told to expect Hope to be drousy for the next 24 hours or so, and that she may have a headache, but to watch out for signs of infection which can be caused by the lumbar puncture. She seemed pretty well last night when we left, and though she was a bit uncomfortable in the evening, I wasn't overly concerned. However, this morning she was hot. Hope doesn't do hot, her temp yesterday at the JR was 35.3 which Is perfect for her. I got her into the docs who checked her all over, and has given her antibiotics for a chest infection. I'm relieved she doesn't think it's related to the lumbar puncture, but still pretty sad that Hope now has something else. She needs a break! And so do I! I would really now please like to have a couple of weeks off of doctors and hospitals!

Oh and thanks everyone for the messages and texts. Sorry I can't reply to texts at the moment. In my lent promise to give up Facebook, my phone has taken rather a hammering!! I used 600 in just over 2 weeks- oops! Lol. But I get my new text allowance next week, plus... Not long till Easter... I'll be back on Facebook!!!!! :0)

Xxx

Please pee plonkey!!!

2011-04-13T08:39:00.001-07:00

Everything's gone as well
As it could go. We've been well looked after, and Hope was even supplied with some fibre optic lights to play with. We had a slight hiccup in the beginning as Hope started coughing and sneezing just as the doctor came to see her. Then the doctor was then considering postponing the tests until she was better. But as I said to her, since November-ish I think, Hope seems to have come down with various viruses and infections one on top of another, so getting another appointment that coincided with a 100% well Honkey, may be tricky! After a thorough going over of Hope, she said she was reluctant to use the planned iv sedative that would have kept her asleep, but also carried a greater risk of respiratory depression, and would only use an oral sedative that wouldn't completely knock her out, but just make her a bit drousy. I did go
With her for her last lumbar puncture, but kind of assumed I'd not be able to here. The nurse asked if we wanted to go in with her, or offered the services of a play worker to comfort hope. As awful as they are to witness, I felt that the least we could do was to be there to comfort her.

Though she'd woken by the time of the procedure, she was still drousy, she gave a little fight as they tried to get her into position, and cried a bit as they took the spinal fluid, it was far less traumatic than her previous lumbar puncture. After that, 2 doctors and 2 nurses spent over an hour trying to take blood. Hope was fairly patient with them all pricking her trying to get the good veins. They took FOURTEEN vials of blood!

After that we went back to the ward. Hope had her vigabatrin in some custard (5 hours late due to fasting for the sedation). They were pleased with her recovery and that she was again alert and had eaten and not been sick. So as soon as she pees, we are free to go. They'd put something in her nappy when we first arrived to catch a sample of urine. It's still dry! We've been here since ten. We have been sat just waiting for her to pee for a couple of hours now. We keep checking and hoping...
C'mon Honkey.... Please just PEE!!!!!

On our way to the hospital of doom and gloom

2011-04-13T01:30:00.001-07:00

We are on our way to the John Radcliffe. The hospital of doom and gloom; the hospital that told us that Sam had 50% chance of surviving his CDH, then 30%, the hospital that told us that Hope had extra fluid in her ventricles, then that she had a small cerebellum, that she'd most likely never walk or talk, that if this was his baby, he'd........... Without question.

I already have butterflies. Chris decided that this morning was the best time to first mention that he thought these tests were pointless, and aren't going to change anything anyway. this is a battle I've been having in my head for nearly a year now- since we last pulled out. Part of me wants to pull out again, but it's too late... And it does need to be done. I hope in a way, that we don't get any answers... but hope that we can rule out some of the more scary mitochodrial disorders. I hope with all my heart and soul and every cell we don't get a diagnosis that carries a life sentence with it. I don't want to know!!!! I guess I'm also hoping that we may find out some positives, that it's not all doom and gloom, that there may be something that they can try, a new medication, the ketogenic diet perhaps, miracle cure would be nice!!!

We won't find out today. It'll probably be weeks, or months. Most likely, today will be the first of many visits, perhaps trips to Great Ormond Street will follow.

Today she will be sedated for the first time. In a way I'm glad she will be, because the last time she had a lumbar puncture, she was awake, and it was such a traumatic experience for us both. I'm hoping they are just planning to use a short acting sedation like midazolam, and not general anaesthetic , but the fact we've had to fast her since midnight suggests the latter- though hopefully I'm wrong.

Poor lil thing, I've not even been able to give her her epilepsy medicines. I just hope we can get them into her early enough for it not to have negative consequences later on. Ironically, today, she does seem to be pretty much better. Though I suspect later, she won't be such a happy honkey.

Lots of love, luck and prayers needed please!

I'll update again later

Xxx

On the mend??

2011-04-08T15:22:00.001-07:00

Today we had to go back in for a review and to have Hope's blood gases checked. It was hoped that her lactate would have come down again, then we'd all sigh a breath of relief that she was on the mend. Unfortunately it was still 3.8. Therefore the SHO (senior house officer) doctor couldn't discharge her. She had to consult with the registrar, who in turn passed the decision making onto
The consultant. All this meaning what could have been a quick In and out visit, was getting longer, and was looking scarily like we werent going to escape. After examining Hope, she agreed we could come home. Though she's still very sleepy, we've had a couple of moments of awakeness and even some smiles. She's not eating or drinking hardly. When we went in this morning, she'd had her morning medicine yogurt (that's just what we give her her cocktail of medicines in), that was hard work to get down her, but is not optional! Then a couple of chocolate buttons whilst Dolly was doing her ballet exam.

We came home late afternoon; hoping she'd now be hungry, I made her an egg Mayo sarni, which she gagged on and spat out, so figured I'd temp her with a milkybar dessert. She wouldn't even eat that!! We even fought to get calpol into her, nevermind anything to drink which is a struggle at the best of times.
Within an hour of being home, even Chris said he thought she'd be better off in the hospital, and I was thinking that he may be right. Hope then slept and slept and slept. I made up a big batch of her favourite butternut squash and pear soup, in the hope that we can try to get some fluids plus something nutritious into her over the coming poorly days. I went out for a run (I've missed that this last week) and was so relieved to come home to a Daddy who was very pleased that he'd managed to get her to eat some.
I was seriously considering (and I haven't quite ruled out) taking her back in tomorrow for iv fluids, but hopefully this is a step in the right direction.

On a less positive note... Her Nappies have been dry all day and night ( it's now 11pm) except for one wet one at 11am, so fluids may still be needed. Her mito disorder means that dehydration is a big no no, and the lactate being high makes this even more crucial.

So just hoping really she keeps taking these teensy steps in the right direction, and that we manage to avoid the children's unit for the rest of the weekend.

The consultant did say to bring her back if she's consuming less than 25% of her normal diet. I think we are just on the border now thanks to the soup. For what reason I do not know, since they can't seem to lower it, she said she'd like to repeat the blood gases next week. But I explained that we are due at the John Radcliffe next week anyway for all sorts of tests, which will include bloods of all sorts... And a lumbar puncture :"( trying very hard to put that to the back of my mind for now

Thanks for all the get well messages. I've passed them all on to her honkness

Xxx

That was scary!! 999!!!

2011-04-06T10:04:00.001-07:00

Hope was unusually sleepy on Monday; a sure sign she's about to come down with something. We went to bed about 11 (hope was in with us). She started fitting. Not an unusual occurrence for , but when i noticed it was getting stronger rather than coming to an end, I glanced at the clock. 11:33. This is something that's become fairly instinctive now, knowing that there's a limit to the time she should be left fitting. Approaching the ten minute mark, I told Chris I was thinking of calling for an ambulance. Hope was still on her back, and then started choking. I lifted her up and she was really sick. SHE HAS NEVER BEEN SICK BEFORE. Then she was choking again though the seizure seemed to be lessening. We called for an ambulance. Hope's seizure seemed to have ended, but she hadn't recovered to her normal self. She was quite unresponsive and trembling and was having some jerky movements in her legs and feet ( leftover seizure activity). The first ambulance crew to arrive was a fast response unit in a car, so they called for an actual ambulance to come and take her to hospital . She seemed to quite enjoy the ride. Though I hated leaving Jordan in Max in bed , I kissed them before I left, and felt to sad knowing they'd wake up worried :"(

Hope was seen by a nurse upon arrival at the hospital bay. She started fitting again, and they moved her to a resuscitation room! A bit extreme I thought! And scary! But they said that's they'd bleeped the paediatric doctors and that's where they'd would want to see her cause they'd have everything they needed to hand. Her fit had ended by the time they arrived, though her little toe and foot were twitching :0(

They took bloods and arranged for her to be taken up to the ward. Her lactate level was upto 4.8 which is so so high and made me very sad ( it should be under 1.6, but Hope's is always raised, though last time it was checked it was only 2.4). It's an indicator that something's definitely not right. Her temperature was 37.8 which is really high for her. Because of the mitochondrial disorder her normal body temp is only 35, and has never been above 36.

She had another nasty fit on the ward, and the doctor was just ready to give her the rectal diazepam to knock her out when the seizure lessened.

Still not knowing what's really wrong,they decided to treat her with intravenous antibiotics, and iv fluids to treat the acidosis in her blood.

By the time this was set up, it was 4am. The recliner chairs to sleep in are far from comfy, and before I knew it, it was morning.

She was on hourly obs, and continuing her iv fluids until the doctor came around 1. He didn't really know what's wrong either, but agreed that we could go home in the afternoon providing she kept her canula in, and her lactate had come down and her hydration was ok. So more bloods. The saying 'like trying to get blood from a stone ' springs to mind. Poor lil honkey is like a pin cushion. Later in the afternoon we were told that the blood gases machine wasn't working, so we could go home for the night and come back in first thing in the morning for more iv fluids, antibiotics and to repeat the blood tests.

Hope slept all evening, through the night, and was still sleeping when we went back in at 9. She had her iv's, then was seen by the junior doctor. She wasn't too happy with her or that her lactate was still 3.8, and I was concerned that she was so sleepy and still jerky, so we had to wait for the registrar to see her. The registrar felt that the lactate, sleepiness and jerkiness were all related to her having some kind of infection, and hopefully she'll improve soon. We were discharged, but have to go back on Friday , by which time , hopefully, she'll have improved, and hopefully her lactate will have come down. If not, then I think she'll be admitted again.

She's Still fast asleep (6pm). I miss seeing her smile. I've tried putting her in the swing, and rowing the boat, and blowing her with the hair dryer- all her favourite things, but no smiles. Though she did manage some ice-cream from the ice cream van after school.

Botox!

2011-03-22T03:33:00.001-07:00

Botox

There's been rising concern again over Hope's tendons in her feet and ankles. Despite wearing splints (which are an ongoing nightmare in themselves) as soon as she's out of them (which she often manages to escape from them herself) her feet point outwards again. This makes standing (supported obviously) uncomfortable and well... They just aren't how feet should be. The more she does it, the less the range of movement becomes.

We are just going through the process of having new splints made. It was at our last appointment that the dreaded casting was mentioned again. Last year she spent 5 weeks in plaster casts from her toes to the tops of her thighs. This process stretches her tendons. But it's a nightmare. She cant do her favourite actives of rolling, swimming and soaking in the bath. Clothing is limited. But mainly, She's so awkward and heavy with them on. She was last year, and she's almost doubled in size since then.

It was left that we'll see how she goes in a few weeks, and see how she gets on with her new splints when they arrive next week.

On Tuesday we had our regular 3 month appointment with Hope's main consultant (and wonderful man) R. He gave her a thorough check up, and was generally satisfied with her epilepsy, her spine and overall health. Though he remarked that the bout of coughs/colds/ infections she's had recently may be linked to me stopping breastfeeding, in November of all months!

He's never really shown much interest or concern over Hope's feet and ankles. Leaving that to be dealt with by the physios and appropriate doctors. However on this day, he was very concerned over the tightness of her tendons and the inflexibility of her feet and ankles. He pushed twisted and pulled my poor baba around till she screamed and tears ran down her face :"(
But, for the first time ever, Botox was suggested. I've heard of it being used for children with cerebral palsy quite often, but had never considered it for Hope. But R Hope's that by injecting botox into the surrounding muscles, they might relax somewhat and relieve her of the tightness. So, she's now on the waiting list- which is 3-4 months or so. So hopefully in the mean time, we can keep the plasterers at bay!!

New wheels! And more nice news

2011-02-21T01:53:00.001-08:00

Far too much time has passed for me to try and catch up, so I guess it'll be sporadic postings every now and then. And that's probably /hopefully a good thing, because in hindsight, this Blog is often my therapy /outlet at our darkest patches. And we don't like those thank u.

Well Hope hasn't exactly been a picture of health recently: the flu jab in december really took it out of her, and since then she's had a chest and throat infection. Though she's on the mend, her illnesses seems to be a vicious circle of being ill, not eating, therefore not taking her epilepsy meds properly, getting dehydrated, and therefore having more seizures and being more lethargic... Not eating etc.

Anyway, this is supposed to be a happy post. Her wheels are here!! A momentous occasion!
I was worried that they'd arrive, and that even after all the effort that went into getting them, that perhaps I wouldn't like them as much as I thought I was going to. Or that I'd have some issues/ personal
Battles to wrestle with over what it actually is/ represents. As in, it's not a pushchair. It's a 'postural seating system' or wheelchair. It represents That my honk can't walk. That she's different. However, it is so splendid, I am pleased to say, I have no such issues. It's nicer than I remembered, and seeing Hope so comfortable in it, just makes it even better :0)
Thank you doesn't seem to cover it really, but thank you so much to everyone that made this possible!

What's more, due to the late (but rightly so) contribution to the wheels by wheelchair services (they finally agreed to take back the useless wheelchair they supplied, and give us it's value towards the stingray), Hope now has a nice amount of money left in her bank account. I decided to get some more extras for the stingray; an extra harness, a grab rail and a play tray (expensive extras totalling just shy of £200). With the remainder of her money, I intend to buy her some 'switches' and switch toys, and a special swing for the garden. Hope LOVES swinging, but her head control isn't strong enough to cope in ordinary swings.

More nice news: I've mentioned the rainbow trust before. We have S from there help us when we need it (though I'm pleased to say we hardly ever do these days- though I know she's there should we need her). Anyway, last year, I shared Hope's (and our whole family) story, and agreed to have pictures taken for the rainbow trust to use in their Xmas appeal. Seeing it all in print, I have to admit, I was a bit gutted, just cause my family life was made out to be a real sob story , and I really don't like people to feel sorry for us, when actually despite everything these last few years have thrown at us, I do feel blessed ( most of the time anyway). Today I received a thank you note in the post from the rainbow trust, thanking us for allowing them to use our story, and saying that our story had already bought in more than £17,000, and they are expecting more! It's so nice to think we've been able to give something back to a charity that's helped us so much in our times of need.

Anyway, a mahoosive thank you from me and Hope to everyone who sponsored us and helped to
Pay for the very best wheels that money could buy!

Xxx

The stingray (nov 19th)

2010-12-05T13:45:00.001-08:00

The stingray !

The stingray by far lived up to my expectations and hopes. Plus more!
It's the one!

The downside being ... £2,816

Though we've raised a fabulous amount, (which I still don't have the final total in ) we are still quite a way off.

With this on mind, I wrote to wheelchair services telling them I'd found the perfect set of wheels, giving the many reasons why this one is suitable over the snappi. And askimg them why they couldnt take back the unused one they supplied us with and make a contribution towards the stingray. I also wrote to say that I'll do whatever it takes to get what Hope deserves, i'm used to fighting for her, and my next step will be to contact charities asking for financial assistance (which In turn would contact wheelchair services because this is the procedure when funds are requested for wheelchairs when they should be funded). I also said I was considering bringing the issue to the press' attention in order to raise the rest of the funds needed. Though I'd been in touch before, as had Hope's lead professional, I felt it was worth one last effort before I started kicking up a fuss!

Within a week I'd had a telephone call from the manager of wheelchair services to say this matter had been bought to his attention. He said he understood my situation, and supported my case, but that ultimately it wasn't his final decision. He said that he'd have a meeting with those who would make the decision, and also that they needed to find another child that they could issue Hope's snappi to within the next 6 months. He would let me know by the end of next week.

On Tuesday I received the good news :0) They are going to take back the snappi and give me a voucher towards the stingray. I don't know exactly how much just yet, but it will be In the region of £1000-£1500. With this though I will have to pay for Hope's wheels to have an annual service which is around £100 each time, plus I am responsible for any parts and repairs costs over it's lifetime (whereas with the snappi, wheelchair services would have serviced and maintained it free of charge). Though this is s bit of a bummer, I'm still happy to be getting some financial assistance from them. That amount, along with what we've raised .... we have enough :0) and depending on how much we get from wheelchair services, there may even be some money left over to buy other specialised pieces of equipment that would help Hope.

So my dear friends, thank you so much, from the bottom of my heart for making this possible!

Xxx

It'll probably still be a few months before we actually get the stingray mind... Red tape and hoops to be jumped through first, but I'm not in a hurry now I know It's happening soonish

What a week (nov 1st)

2010-12-05T13:43:00.001-08:00

What a week!

A while back, Hope's physiotherapist told me she was concerned about Hope's neck, and her difficulty in achieving a 'chin tuck', so this, along with mine and her concerns over her hips, and her continuing 'specialness' with her twisty ankles, prompted her to refer Hope back to the orthopaedic consultant.

Fortunately, for my sanity, it wasn't until the morning of the appointment, that I realised where the appointment was. The Brunel treatment centre. I googled it, merely to find directions, so imagine my horror, when this is what I discovered :

The Brunel Treatment Centre is a 128 bed state-of-the-art facility attached to the Great Western Hospital. It has been specifically designed to treat patients who need elective (planned) surgery and where patients are offered a pre-assessment health check to ensure they are fit and informed for that surgery.
So that panicked me to say the least.
Upon arrival, We were sent for lots of X-rays of various bits from all angles.
Then we met with the orthopaedic surgeons, who thankfully agreed that it's worth perseveringly with the splints in regard to her twisty feet and ankles, and leAving surgery as a last resort. Phew!!! They also remarked of her spine, that it appeared straight - at present, at least. This is great because in the past she'd been diagnosed with scoliosis - a curvature.
Her hips were also found to be fine, which is a relief, because surgery and spiker cast would be the treatment.

However, on our way in to
Meet with the ortho surgeons , Ravi, Hope's main consultant, spotted her, he followed us in, asking what was wrong with Hope, saying that she didn't look well, and asking me lots of questions. He apologised for worrying me, told me not to panic, then arranged for us to go to the childrens' unit for tests after this appointment.

We did, but Ravi wasn't about, and there wasn't anybody available to do the tests he requested, so we arranged to go back on Friday. Despite Ravi telling me not to, I obviously did worry. So I rang Hope's disability nurse, who works closely with Ravi, and she arranged for us to be fitted into a clinic with him the next day.

Ravi gave her a thorough examination, and found her in fairly good health apart from the constipation/fissures - poor mite. But he felt she wasn't as she was last time he saw her a few weeks ago. But I explained to him, this is how it is with Hope. Last time he saw her, she was 100% and on top form, but she's not always , and mainly, we don't know why.
He wants to see her again next month

We had to go back to the childrens' unit on Friday. Fortunately we saw a competent doctor who took blood from Hope as well as can be expected.
We had to wait for the blood gases results. The doctor came back with them and said they seemed ok, but her lactate levels were a bit elevated. They were 3.45 (should be less than 2), but Hope's usually run around 4-5. This equates to lactic acidosis, and causes damage to organs and is literally poisoning her blood. So being that low, makes me very happy. Though I'm slightly puzzled as to why they are that low, and wish I knew what caused it, and how to keep that low, or even bring it down more.

It's been.... Emotional!!! ( the half marathon 10.10.2010 )

2010-10-25T11:07:00.001-07:00

It was... Emotional!

I can't believe it's all over. All the training, and nerves. I can honestly say; i thoroughly enjoyed the run.

The morning got off to a memorable start, when my water bottle leaked over me in the car, leaving me looking exactly Like I'd wet myself! I had to put this bit in, cause if I didn't Mary , who found the incident highly amusing and probably nearly her highlight of the day, would have no doubt commented at the bottom of this Blog 'you forgot to write about your accident' lol.
In hindsight, the mission to find a dryer, at which I stood in my knickers, kept our minds occupied, and probably stopped us going insane with pre-race jitters.

I had my ipod loaded with my favourite tunes. At just past the halfway mark, Hope's song came on. 'you're amazing.. Just the way you are' I blinked back the tears as best as I could, as I reminded myself why I was doing this.

Seeing my lil family waiting at the end was great. Jordan and max joined me in running the last few hundred metres . Though I nearly tripped over as Max kept cutting me up , complaining at how slow I was running , and asking could I not go any faster. The fact that I'd just ran 13 miles, the last 1.5 of which were all uphill, completely insignificant to him! Lol

The fundraising has been great too. Auntie Mary raised bomb, and to my amazement the kids friend's dad- Steve, from the school, text out of the blue a few weeks before the race, and said he was running it anyway, and could he do it for Hope's wheels fund. In all, we've raised more than £1,000 (could be considerably more, but not counting my chickens till they've hatched). I've been moved by the generosity of friends. Some whom we've never met in person, but whom I'm online friends with, either through SANDS, open uni, or having a special needs child. I received some beautiful cards and letters through the post with cheques, along with a beautiful story book for hope from a fellow angel mummy. I'll keep all these forever!

At the end of the race, I was chatting with Hope's visual impairment teacher who came in just before me, and a lady approached me, and said 'i saw your pledge on your t-shirt (photo above. We had to write why we were running) and wanted to give you something towards your cause'. Well, that did it for me and Hope's teacher. Both of us were choked and teary eyed.

Mary and I had a sweaty hug as we congratulated ourselves on how far we've come. I don't think we ever imagined we'd ever actually get as far as the half marathon. We joined the half marathon training program when we were running about a mile or 2. Each week the distance grew, and we kept amazing ourselves , but we just kept saying 'we'll keep trying'. Expecting that at some point , we'd hit a wall, and not be able to do it anymore.

I know I'd never have considered it without Mary! Infact , who's crazy idea was it? What made us think 'let's do a half marathon' and not a 5k or 10k? Lol

I know I'd never have achieved it without the support from shin splints- thank you so much to all the mentors there!

But more than all that, there was one very special lil
Lady that kept me going. Each difficult step I took, I took it knowing that I CAN, and I am lucky that I can. But Hope can't. So the least I can do, is to keep stepping, so that she can have the wheels she deserves!

Love you so much my honkey. Mummy will get you the best baby wheelchair there is. You will ride in style and luxury!
Thank you for being you!!!

Xxx

The shuttle . Part 2

2010-10-07T06:44:00.000-07:00

Today we had a rep come to the house with the shuttle system. A try before you buy ... Which is a must when u r spending that kind of money.

I fell in love with it even more when I saw it. It's most definitely more pushchair looking than wheelchair, it's compact, light... Hope looked very well supported and comfortable and very grown up in it. The seat unit can be turned around easily so she could face outwards or more importantly, towards me. The rocker base was fabulous! I can imagine Hope sitting there relaxing and demanding to be rocked. An extra bonus, something I didn't realise before, is that the seat unit can be used alone and therefore would be useful when out visiting.
Perfect??? NO!!!!
The hood and raincovers don't fit on in the parent facing mode. The main reason we don't/ can't use the snappi!!!
Arghhhh

Anyway, all is not completely lost. The rep said he didn't think it would be too difficult to adapt the hood and raincovers so they would fit. So he is going to speak to someone in the workshop to see if it can be done, and then if they Can get it past all the safety tests etc with it adapted. So now it's a waiting game. With the possible hood adaption, it would be perfect. Without... It's not.

In the meantime, I've arranged another rep to come out from another company with a different set of wheels. The rep today actually suggested this, and another mum passed me on a brochure.
The stingray ...

WHEELS

2010-09-27T06:52:00.000-07:00

This is the 'Tom stroller' we were offered. EW- NO THANKS!!!

This is the far more attractive and appealling 'snappi', that was the alternative. Not bad, except; it doesn't have a parent facing option, which when you consider the amount of time Hope spends on her way to and from appointments and therapies, but more importantly; the fact Hope is an epileptic and I NEED to be able to see her.

To cut a VERY long story about a meeting with wheelchair services and with support from Hope's lead professional, a happy compromise was found (or so we thought at the time)...........

Here is Hope on her way home from hydrotherapy in her ADAPTED
snappi (now parent facing). HOWEVER, this picture is the one and only time Hope has used it!

This is why it's no good!!!
1- It doesn't have a basket-though on this count we are lucky to not have
a basket, as you only get a basket if you have an oxygen unit or suction equipment.

2- Now it is rearward facing, the raincover doesn't fit! and there are none that do. Which in the UK is never gonna work!
3- No hood to protect her from the wind and sun (if there ever is any :O) )
4- BOLT CITY!!! This pushchair was manufactured to be forward facing, therefore, the back of it, which is now the first thing you see (but normally hidden), is metal and big bolts - EW

I've been in touch with wheelchair services and tendercare about these issues, each seem to think it's the others problem- none offering any solutions, so when I get the opportunity, it will be returned to wheelchair services- it might well suit another child .

So here is my solution...I've searched high and low, though to be fair, there isn't a massive market, and they are all ASTRONOMICAL in price, but this, meets Hope's and my needs.....

THE SHUTTLE SYSTEM

The Moon buggy

Not only is it quite nice looking,(as far as these things go),it can be forward or parent facing, it has a hood, raincover and basket, it's lighter, suitable til age 6 ( though i suspect it'll last longer since she's on the smaller side).

Plus with alternative bases options available, it also fills Hope's needs for a comforable chair for her to relax in...
The moon rock (excuse the sideways pic)

THE DOWNSIDE.........................
£2,775!!!!!!!

Hence the half marathon, which is probably going to be the first of a few fundraisers. But, she deserves the best, and it'll be worth the hard work!

So any donations/sponsors, big or small, will be very gratefully recieved.
Donations can be made through paypal.co.uk account : runningforhope@yahoo.co.uk

Thank you very much

Xxx

runningforhope

2010-09-14T04:27:00.000-07:00

In May, myself and Hope's godmother Mary, joined a running club (Swindon Harriers), at this time, we were in the beginners groups, ands started out jogging for one minute, then walking for one, jogging for one and so on. We progressed fairly quickly in the next couple of weeks , then set our sights high. In hindsight, very high. It was when we could run about 2 miles without stopping, that we decided to join another running group (Shin splints), in preparation for the half marathon. We said that's what we'd aim for, but at the time it seemed a very very long way off. Well, 2 months or so have passed, and we are now running distances that we've never even walked. Im upto 10 miles and Mary 12 (I missed last week as Chris was working). Apparently, according to more seasoned runners that ourselves; if you can run 10 miles, you can run 13.1.

So, we've done it! And of course, it's always been in our minds that we'd do it for a good cause. Well, charity begins at home. Right? Hope inspires me daily, and on those long runs, when one could so easily give in and walk, it's her smiley face that spurs me on. I do all that I can to make her life, the best it can be. She's happy, so I guess I'm doing something right. However, I feel like, there are things that would make her life even more comfortable, for instance, a chair to sit in- not much to ask right, but when you reach a certain size, baby bouncer chairs are no good, and when you don't have much control over your muscles, you can't just sit on the sofa. So you are held all the time, or you lay on the floor- which you enjoy, but , it would be nice to have a suitable chair.
Then there's the wheels... She's getting to the size and age where she fills her pushchair. We have been supplied with a 'special' pushchair, but this is unused in our cupboard under the stairs as it does not meet her needs (this is another story, but I'll fill you in another time). Unfortunately, with disabled equipment, there isn't a huge market to choose from, and basically, anything that's been made for disabled people, is ridiculously priced. You could quite literally, take the price of a normal item, than add a couple of zeros to convert it.

Then there's the thepary. The brainwave therapy seems to be paying off well. We paid just under £700 for the initial assessment and therapy, and are due back for reassesment next month. Thanks to family and friends doing some carbooting, we have the next visit funded. Ideally though, we'll go 4 times a year.
And I suppose, there are other therapies that I'd like to try if money were not an issue.

So here begins my fundraising. The half marathon, is on the 10th October. Please sponsor myself or Mary through paypal address runningforhope.yahoo.co.uk
Any amount will be very gratefully recieved

Thank you

Xxx

HAPPY DAY :o)

2010-08-20T09:04:00.000-07:00

For one reason or another, a few months have passed since we last saw Hope's lovely consultant Ravi. She's meant to be a 6 weeker to this particular clinic .

If you've read other posts, you'll know this doctor is a very significant person in our lives; he's such a kind doctor, but has given us bad news more times than he or I care for. In some of our bleaker times, he'd call to see how Hope was. He's also given me too much food for thought, and my head and heart wrestle continuously with the whole biopsies - to test or not to test battle. His thinking was along the lines of forewarned is forearmed (possibly, but the findings may not be conclusive still). My train of thought being I couldn't bare to know. Ignorance is bliss. I often lay at night with her wondering how long ...

Hope was on top form today, and Ravi could see she'd grown. He was pleased with how well she was supporting her head now, and she showed off with her babbling. I told her that she's a lil roller now, and he asked if she might show him, and she was pleased to have the opportunity to perform one of her favourite pastimes.

After this, Ravi picked her up and fussed and kissed her as he usually does, and told me how great she's doing.

As usual, I presented him With a host of questions ; my first about checking lactate levels, kidney function etc (these are done routinely for Hope). He said he wouldn't bother this time as it's clear to see how well she is :9)

We discussed her vigabatrin doses and her fleeting seizures. I questioned whether her recent thrush is an indicator of an imbalance , but he thinks not. I asked to be prescribed a rescue remedy med to treat her epilepsy in an emergency, he agreed this was a sensible thing to do now. But since pharmacies won't hand this out, and I need a lesson in it, we'll have another appointment soon to go over this.

He's also prescribed a laxative for her chronic constipation, but after finding out more about 'lactalose', I think it may not be ideal since it works in a way which draws fluid from the body, and requires a good intake of fluids, however, I already have issues keeping her hydrated. We'll see how it goes.

For a change, I bought up the biopsies... I suppose I know eventually
I'll have to agree... Maybe it was time to start the ball rolling... Much to my amazement, he said he really doesn't think there's a need right now. Obviously we know there's something majorly wrong, but things don't seem to be going downhill at the moment. And Ravi spoke of new techniques and tests that are being developed and researched all the time, and that the knowledge is growing rapidly, so in time, conclusions may be reached on the blood and csf in labs.

He said he'd see her in 3 months.

I could have skipped out of there :0D

xxx

Brainwave brainache

2010-06-26T11:48:00.001-07:00

Apologies for the lack of updates. It's been busy. I'll try and fill in the gaps sometime.

Well, we are all In the car on our way home. Considering this trip to brainwave has been something I've been looking foreward to for months... I couldn't have got out of there fast enough.

I've heard very good things about the place. But only the good things. I know one of my friends swears by it, and gives a lot of credit to the program for the progress her son's made. BUT what I didn't realise, was how hard it was gonna be! Actually, I do think Claire said it was 'physically and emotionally
Draining', but I think that may have been a slight understatement.

I'll try and put you in the picture; Hope has been stretched and pulled beyond her comfort, she's been made to stand when she can't even hold her own head properly yet. She's cried, screamed and pleaded with me for them to stop. Her big blue eyes haven't shed so many tears. She tasted of tears when I kissed her.

We finished each day with a session in the hydrotherapy pool, which made Hope happy again. The therapists were amazed by Hope's confidence in the water, how she really loves the water, and my ability to support Hope in the water by just using one hand under her neck. They asked if they could record this for their staff training.

Day 1 was spent assessing Hope, and by the end of the day, they'd designed her program. Day 2 was spent going over the program, me trying it, and then recording it.
So we now have our programs; one for the water, and one for home. They are both on laminated sheets and DVD. The home one needs to be done 6 times a week, it should take around half hour, but initially could take an hour.aNd until Hope and I are a more used to it, the whole program requires 2 people to carry it out, We've been provided with a peanut ball and a wedge. I'll try and put the DVD on YouTube very soon.

You can't fault the service there; everyone was really kind and helpful. The accomodation was so nice, it seemed a shame we weren't staying longer. Hope had 3 therapists all to herself for 2 whole days. This meant that the time there completely evolved around Hope. We were able to break for as long as we wanted, whenever Hope needed a rest, a cuddle or a feed.

So now we've just gotta crack on with the program, and wait to see I suppose. Hopefully it'll be worth the cost and the tears. Hopefully I'll be singing it's praises too.

if you are interested have a look at their site http://www.brainwave.org.uk/

Oh my honkey...

2010-06-26T11:47:00.001-07:00

Omg- my honkey!

Can't quite believe I'm stood outside the oasis ready for the NCT sale, and Honkey isn't here. She's popped off with Daddy and Dolly to quickly pick Max up from football. This is the first time we have seperated. But it's cold. It made sense for her to be in the warm car. It happened so fast. She'll be back soon.

I've been preparing myself for this day for ages. Seems crazy I know, but in the beginning you don't leave tiny babies, then the seizures started, and through fear I wouldn't even leave her in a room, then I guess it became habit, then perhaps obsessive lol.

A few weeks ago, I took a step in the right direction, by leaving Hope with S (from rainbow trust) whilst I took Jordan and Max swimming. But, S was still at swimming, just watching, so I could see Honkey and check she was ok.

.........….……..............................................................

They came back a few minutes later, and I was relieved, and pledged not to do that again in a hurry. But actually, i think I need to. Chris won a meal out for us both at an Italian restaurant, so I think I can be tempted.

Update: we did go out for the Italian. S looked afer Hope and dolly and Moo. Sadly Nobody in the family knows Hope well enough for me to be able to trust them with her care. But I know Shes in good hands with S, plus dolly and moo like having S look after them.

Happy Purple Day !! (International epilepsy awareness day)

2010-03-26T16:09:00.000-07:00

Today we've been purpled! Dolly went to school with her uniform on but accesorised with a purple scarf, purple hair bands and purple sunglasses (even though it was raining). She looked such a lil diva. Hope was purpled too. And me. But so was Hope's rainbow fsw. And soooo many of our dear friends let us know they were also wearing purple today in honour of Hope and other epilepsy suffers. My heart has been smiling all day. We are blessd to have such lovely people in our lives. Thank you everyone.

Today, we've been honouring, Hope, and her friends, Noah, Max, Liam, Molly, Jude, Kendall, Reagan, plus those lucky enough to 'outgrown' the condition, and one very special lil angel Sophie.

Xxx

Even more good news - The Ruth Griffith's assessment

2010-03-25T15:24:00.001-07:00

Just a quickie, and this is rather late news too, but still playing catch up...
Hope had her developmental assessment (2ish weeks ago). I wasn't looking forward to it, particularly because I knew I'd leave with a number. That is an age. An age of a baby who Hope's development is equivalent to. I know it needs doing; it gives us a mark in the sand, so we can see where she is now, so that in the future we can compare her progress. BUT, it does not recognise her beautiful lil personality, nor the fact that these achievements are huge for Hope, or the fact that she can warm hearts, or as her god mother Natalia said 'make even the grumpiest of people smile'. It's just a number.

I had in my head, that Hope would roughly come up at about 2-3 months. Though at the same time, recognising that in other areas she'd probably be more than that. She's just recently gained some head control, and can now tolerate brief 'tummy time' and is pushing herself up on her arms.

I'd have been fine if they'd said 2-3 months. perhaps a little gutted seeing it in black and White maybe. But I'd get over it. Like I said, and always do, everything she achieves I'm so proud of and if she never does anymore than she does now, so be it.

Well, bless her lil cotton socks, she scored 3-4 months on motor skills, and 7-8 months on social, speech and language :0) :0) :0)

So now I'm extra proud :0)

Xxx

Hope and Max video

2010-03-24T07:49:00.000-07:00

There's gotta be a better way of sharing videos on here, but until i figure out how, please follow the link.
Hope and Max video

This video was taken in a restaurant on my birthday, and shows Hope's lil personality off. She loves her brother and sister so much. Max certainly brings out the funny side to her.

'special' shoes

2010-03-24T07:19:00.001-07:00

We've had them a few weeks now. I thought I might grow to like them, or even get used to them. But, I hate them!!! There's not much to say about them really... They are to try to correct her toe pointing caused by possible tendinitis or else just caused by neurological issues. I think the fact they are blue and have clowns on them doesn't help much. They are not exactly ladylike, and certainly don't go with any of her clothes.
because of Honk's little feet; We were limited in choice; either these or black and red so these were the lesser of 2 evils! Once her feet grow a bit, there are a lot more to choose from including pink ones- though they are not Clarks :0(
Fortunately, she doesn't have to wear these ones out of the house. Her PT was happy for her to continue to wear pretty, cute, soft, girly shoes when she's out and about and wear her 'special' shoes at home.
I plan to talk to her PT next time I see her about getting splints instead. At least that way I can buy her nice shoes. I suppose it's a bit silly of me really, of all the things that aren't straightforward, most things I'm
Pretty accepting of, but not this. Not yet anyway!

So Tricia, I know exactly what you mean about the 'foxes'. Sometimes it is the small things that get ya (see link to Noah's archives)
Xxx

Bear with me

2010-03-24T03:46:00.001-07:00

This is completely irrelevant, but when writing the title, I was uncertain as to which bear/bare to use, though I was leaning towards the latter, thinking that the first was furry and brown. However, a quick google revealed that I'm not alone in my pondering, but if I'd have written 'bare with me', I'd infact be inviting you all to get naked with me. Lol. English lesson over :0/

So incase you hadn't noticed, we've been experiencing problems here on the blog. I've been inundated with messages telling me that Hope's blog had been taken over by some kind of pop up virus. This news first arrived on Mother's day, and I was perhaps unrationally upset, but the blog was the straw that broke the camel's back, and mother's day is always a pretty hard day for me, as I know it is for all of my friends who have a child in heaven. I never imagined that the blog wouldn't be safe, and was gutted to think that this part of Hope's history could be lost. Fortunately, it's still here, and thank you to everyone that clicked 'report abuse'. It seems to have worked.

I've been a bit slack with the blogging, that along with the fact it's been 'down', has left me rather behind. So, I'm gonna try and blog at least once a day in order to catch up

Until then... Hope is doing just fabulously!!!!

Xxx

More good news

2010-03-12T12:13:00.001-08:00

For one reason or another (appointments clashing or his holidays) a couple of months have lapsed since we last saw dr ch. He's Hope's main man in my view. It's now coming on 4 months since Hope's seizures miraculously vanished, and she's really developed a lot!
As is norm, the first ten minutes of the appointment was spent with dr ch holding hope and admiring her. Honestly, the way he is with her, you'd think he was a proud grandparent rather than a doctor. Anyway, he was sooooo pleased with her and how she's doing. He said it's beautiful to see her so well and alert and attentive- even though hope was being a bit of a diva :0)

The recommended dose of vigabatrin (epilepsy meds) is between 30-150 mg per kg of body weight. Though higher doses can be given. At one point (Under instruction of course) I was giving hope 180mg per kg of her weight to try to keep the nasty seizures at bay. However, since the seizures have vanished (touch wood) I've not needed to increAse her meds, yet her weight has continued to increase, in effect bringing down her dosage to about 140mg per kg. However, this is still a high dose, and being aware that her kidneys are having to work very hard to process this drug, I asked dr ch if he would agree to me dropping them. I half expected to get a telling off for even suggesting such a thing..something along the lines of 'if it's not broken...'
Anyway, he did agree. And thought it the right course of action. His recommedations on the drop were greater than I feel comfortable with, so I'll probably do it a lot more gradually. In fact this particular appointment was last week and I still haven't even began to reduce them; I'm waiting for hope to be in 'tip top' health; and at the moment she has a cough, Is getting over a suspected case of hand, foot and mouth disease and being treated for oral thrush :0/

Her physical examination was positive; they are happy with her growth, but more noteworthy is her reflexes are now 'normal' (previously reffered to as 'brisk') and her tone is now 'normal' (instead of 'floppy').

And, I've ....(struggling for the right word here)...given in/ changed my mind (neither of those really fit; I haven't given in because I haven't been pressured in the slightest, and changed my mind isn't true either, because I really don't want them done still, but I know it's the right thing to do ) about the whole skin and muscle biopsies. After 6ish months, I've decided we need to get them done. all the other tests have been inconclusive, but show markers (lactic acidosis) for mitichodrial myopathy. There's a chance that by knowing more, Hope could be given vitamins/supplements to balance things out. Dr Ch now thinks that there's a fairly good (75%) chance that we still won't get a firm
Diagnosis. That suits me just fine! I don't really want to know. Would anybody want to know how long they have? Really spoils things I think.

<3 Cardiology <3

2010-02-25T08:39:00.001-08:00

Today we met with the paediatric cardiologist from Bristol. He explained how many mitochondrial disorders affect the heart. I already knew this so was nervous to say the least, but hoping, praying and crossing everything that there'd be Nowt wrong with her little ticker. I mean, surely she has enough on her plate already.

I knew that dr Ch had requested some tests on the heart, but I thought, and probably for the best that today was purely consultation. Anyway, it wasn't; she had an 'echo' done on her heart.
It seemed to take a lifetime...he explained things he could see to a student doctor-but it all sounded foreign to me ( I haven't yet educated myself on the heart). Anyway.... He said 'it all seems...NORMAL'!!!!!!!?

I usually hate that word. There's not much about Hope that is 'normal'. So to hear that her heart is normal, I'm ecstatic :0D

He did say that just because it's fine now, doesn't mean it always will be. Then more good news...... He wants to see her in 2 years!!! Well, there have been times when it all seemed so bleak that she mightn't ..... But, well I guess they aren't as negative right now.

I did however get some food for thought about the whole further investigation thing. He said how with certain mitochondrial disorders, different vitamins can be given to prevent/improve things, but until we know more.... So I'm being swayed :0/

On cloud 9 for a change :0)

Thanks to everyone for the good luck wishes and prayers today! Means a lot to me n honkey

And thank to S (hope's fsw) for coming along today. I know you'll read this, and that people from Rainbow Trust read it too- you'll never know how much it means to have the support we get from you. I expect everyone there is really nice, but we think we are really lucky to have S!!!

Xxx

Hope's birthday party

2010-02-17T03:41:00.001-08:00

The laptop got a virus, so we had to wipe it. It's not up and running 100% yet, so can't add all the photos I want to. From my phone I can only add 1. So I will add one of the best photos we've ever managed to take of Hope (taken at her party) she's smiling AND looking in the right direction!!!

The party was fabulous. Hope was joined by her buddies for a bouncy castle party. We played pass the parcel and had a piñata. And ate lots of jelly!

Thank you to everyone who came to celebrate with us!!

Xxx

Happy 1st Birthday my darling baba Honk

2010-02-02T09:12:00.000-08:00

Dear Hope

Happy birthday My super little wonkey baby

Thank you for gracing us with your presence for a whole year. !

Thank you for being the most cuddly baby, just what we needed!

Thank you for giving me the most wonderful view when I wake up every morning-

you, next to me!

Thank you for the way you reach up and hold my hand

when you are feeding or cuddling.

Thank you baby, for the most beautiful smiles you give us each day-

that's all mummy ever wanted- knowing you are happy, mAkes me happy.

Thank you for teaching us all to appreciate the little moments in life, and

teaching us to enjoy the present.

Thank you for showing us true love,strength, dignity and bravery;For being happy, despite what life

throws at you.

Thank you for letting me Kiss you a million times a day on your

chubby, warm, pink cheeks.

Thank you for your beaUtiful curls behind your ears, your beautiful blue eyes and curled eyelashes, your perfect skin and your funny belly button.

Thank you for being the cutest baby in the world!
Thank you for needing me, as much as i need you.

Thank you for choosing us as your family. We are truly blessed and honoured.

Thank you for a wonderful year!

Birthday girl with her big brother and her new toy- the mirror chimeabout (which Hope LOVES)

A memento of the special day

afternoon nap

Birthday celebrations at Frankie and Benny's

The cake she overindulged so much that she got heartburn~poor baby

'nevermind photos and wishes...give me some of that cake!'

MMM, Honkey loves birthday cake!!!

One tomorrow!

2010-01-27T14:58:00.001-08:00

The above photo was taken at 11pm on the 27th January. The last photo of her
before she turns 1!

My baby girl turns one tomorrow. I can't believe it: many have commented, how quickly it's gone, I'm not so sure. It's been eventful! I guess it's a bit sad, that she's not technically a baby anymore. But of course, she very much is. She most definitely is not a toddler.

Daddy has the day off work tomorrow. I'm looking forward to opening her cards and presents with her. We are taking her to the craft village and getting her hand and footprints painted onto a plate, then when the kiddlies get home we are going for the traditional birthday celebration (for us anyway) to Frankie and Benny's.

Xxx

21 hour awakeathon

2010-01-21T04:53:00.001-08:00

That's not normal for a nearly 1 year old right? Hope woke yesterday Morning ready to start the day at 5am. One can't feel anything but joy to wake up next to a noisy smiley girl. Because I've been unwell, we had an 'in' day; cuddles and playing. At lunchtime Hope finally seemed tired, but fought till 1:30 ish. 'S' from Rainbow trust came round to watch Hope whilst I did some housework, and I joked that she'd probably not have her work cut out today because Hope had been up since 5, and had finally given in. I had emptied the dishwasher, cleaned the kitchen, then taken the laundry upstairs to put away. When I was coming back down the stairs I could hear S clicking (hope's favourite noise). Hope was fully charged and ready to play!! She was awake all evening, and very content, which was nice considering she's been under the weather since the tonsilitis. At 10.30 we went up to bed. Hope wasn't tired, but was happy to lay in her cot and have me activate various flashy/noisy toys. But not happy when they stop. I had her In bed to see if she wanted feeding or cuddles... All the while, it's getting later and later. And I am feeling less and less amused. Yet Hope is having a great time and seemed to be shouting louder and louder. Finally some time after 2am, she settled.
Sometimes, I think Hope takes this being 'special' too far! Lol

Xxx

How many doctors does it take to ....?

2010-01-16T02:08:00.001-08:00

How many doctors does it take to.....?

On Wednesday I took Hope to the doctor's surgery because she'd been unwell for a few days, and I needed to make sure she didn't have any kind of infection. Because of her mitochondrial issues, infections are more detrimental to her fragile health. I was Assured she just had a cold.
From 11am Thursday, she cried for 4 hours solid, refused all food and drink, and had no wet nappies. Dehydration for hope is a big no no. So I called the children's unit who said to bring her in.

We were taken onto the ward (the bAby room (there wouldn't be much sleeping going on in there I can tell you). At 4 Hope was seen by a doctor who checked her over, said she was fine. Then produced a jug of dyrolight (a rehydration solution), and said when it was gone, hope could leave. Erm...but she wasn't drinking!!! Doh!!!
At 8, we saw another doctor, to whom I explained that I felt the previous doctor had missed the point; Hope has a mitochondrial disorder, she needs her lactate levels checking, her bloods checking, we need to find out why she is crying and unwell.
She checked Hope over, couldn't find anything wrong, but got the requested tests done. But it was gonna take a few hours to get any results, and we couldn't leave :0(
In the meantime Hope needed her epilepsy meds... But she was refusing to drink ;9( knowing that these HAD to go down, I went to speak to a doctor. A mutual agreement was made to ng tube her. A massive defeat in my eyes, but preferable to the seizures if she didn't get her meds. This is when I met the next doctor. I immediatly warmed to him when he began asking questions about Hope's mitochondrial issues. Atlas, a doctor who understands!!! He gave us some really great news... Her lactate level was 4.7. The lowest it's ever been recorded. (it should b under 2, or more commonly under 0.5, but for hope, this is good). He checked her over, in preparation for the ng tube. Hmm... He thought she had a sore throat... Looked in her mouth, and saw pus at the back of her throat. Auntie Mary got to bring home an absolutely exhausted little girl, and one very relieved mum (me).
So, it takes 4 doctors to diagnose tonsilitis. And because it wasn't diagnosed early on, this led to dehydration. It's a joke!

Xxx

How many doctors does it take to.....?

2010-01-16T02:07:00.003-08:00

On Wednesday I took Hope to the doctor's surgery because she'd been unwell for a few days, and I needed to make sure she didn't have any kind of infection. Because of her mitochondrial issues, infections are more detrimental to her fragile health. I was Assured she just had a cold.
From 11am Thursday, she cried for 4 hours solid, refused all food and drink, and had no wet nappies. Dehydration for hope is a big no no. So I called the children's unit who said to bring her in.

We were taken onto the ward (the bAby room (there wouldn't be much sleeping going on in there I can tell you). At 4 Hope was seen by a doctor who checked her over, said she was fine. Then produced a jug of dyrolight (a rehydration solution), and said when it was gone, hope could leave. Erm...but she wasn't drinking!!! Doh!!!
At 8, we saw another doctor, to whom I explained that I felt the previous doctor had missed the point; Hope has a mitochondrial disorder, she needs her lactate levels checking, her bloods checking, we need to find out why she is crying and unwell.
She checked Hope over, couldn't find anything wrong, but got the requested tests done. But it was gonna take a few hours to get any results, and we couldn't leave :0(
In the meantime Hope needed her epilepsy meds... But she was refusing to drink ;9( knowing that these HAD to go down, I went to speak to a doctor. A mutual agreement was made to ng tube her. A massive defeat in my eyes, but preferable to the seizures if she didn't get her meds. This is when I met the next doctor. I immediatly warmed to him when he began asking questions about Hope's mitochondrial issues. Atlas, a doctor who understands!!! He gave us some really great news... Her lactate level was 4.7. The lowest it's ever been recorded. (it should b under 2, or more commonly under 0.5, but for hope, this is good). He checked her over, in preparation for the ng tube. Hmm... He thought she had a sore throat... Looked in her mouth, and saw pus at the back of her throat. Auntie Mary got to bring home an absolutely exhausted little girl, and one very relieved mum (me).
So, it takes 4 doctors to diagnose tonsilitis. And because it wasn't diagnosed early on, this led to dehydration.

Xxx

How many doctors does it take to...?

2010-01-16T02:07:00.001-08:00

Hope's first Xmas (in pictures)

2010-01-09T14:05:00.000-08:00

Since Sam died on Christmas Day, just 2 short years ago, Christmas is a difficult time for us, to say the least. However, this year, we definitely had a reason to smile!

Here's Hope in her Xmas pjs on Xmas Eve. And all 4 of my babies together on Xmas Eve-Sam's 2nd birthday, at his 'garden'.

And here she is meeting Santa with Jordan and Max at the Koalas Xmas party.

And the pile of presents Santa left.

Hope with one of her favourite toys- ELMO LIVE! He's soooo cute and funny!

Hope with some more new toys, wearing the lovely outfit auntie Mary bought her.

And Hope at dinner. She had chicken, roast potatoes, cauliflower cheese, sweet potato, carrots, cabbage, and parsnips- with lashings of cranberry sauce!!!

(If you are just catching up since my long absence, there's a new year post below)

Xxx

A belated Happy New Year

2010-01-09T13:45:00.000-08:00

Apologies to 'followers'. I have really been slacking with the blog. There's probably a lot I need to fill in on, but wouldn't know where to start, so I'll begin by wishing everyone a happy new year.
I'm hoping this year will be a quieter one than the last few, that we'll spend less time at hospitals than the last few, and more importantly, that it will be less sad than the last few!

On a positive note; Hope is still seizure free! It's been almost 2 months now I think (with the exception of 7 spasms she had one day when she caught a virus).

The 'around the child' meeting that I mentioned in the last blog, was largely positive, with the exception of something that was said that I'm hoping i misunderstood. Too sad to even type :O(
Again, the topic of more tests came up, and I'm certainly giving it some serious consideration.
Oh, and Hope came up as delayed by 4-6 months on her speech and language assessment. Now some might consider that really bad on a baby who was at the time 11 months, but for me, it's REALLY positive! It means, she is making progress, and is no longer at newborn state.
We were also given a referal to use the hydrotherapy pool (which just happens to be 5 minutes away from our house). We've only been once so far, but it was lovely. Hope had a great time, the pool was so warm it was like getting into a bath, she was laughing and spashing and didn't get fed up, and we were eventually asked to leave after over and hour because it was closing.

On a sad note, we've come in contact with another baby girl 'M' who has recently been diagnosed with infantile spasms (the same kind of epilepsy as Hope has, which is a 'catastrophic' diagnosis). We came into contact with them through the lovely Dr. Ch, who was so concerned for this baby, whilst recognising it was completely unethical, but seeing the needs of the patient over everything else, urgently needed some vigabatrin, which we supplied. So far, our contact has been brief; texts and calls, but we plan to meet in the new year. Of course, I am sad to know of another life claimed by the devastating prognosis, it will be nice to share experiences, worries etc with someone.

Sorry if that was all a bit of a jumble...I mustn't leave it so long....Now I'm gonna post another blog about Hope's first Xmas...(See above)

Pleeeeeaaaaassseee drink up

2009-12-17T14:50:00.001-08:00

Dear Hope,
Please please please drink up your bottle. It's not ok for it to take over 3 hours to get a 2oz bottle down you. I know you've never been fond of the bottle, but baby, it's just 2oz. And it's important. It's got your medicines in it.
It's never been an easy task, but it's never been this hard. The last few days have been a nightmare. It's only once a day baby. Please. Daddy's tired. Mummy's worried.
didn't you hear what they said today?if u don't start drinking, you'll have to have another ng tube. We don't want that.
Love Mummy
X x x x x x x x x x x x x x z x x xx xxxx

A quick belated update

2009-12-16T03:48:00.001-08:00

I have been meaning to update about the zillions of appointments we've had recently but it's a mamoth task, so I'll just give u the highlights...

We met with the geneticist, who certainly gave us food for thought about the whole further investigation malarkey... Though little good is to come from it for Hope, if there is something genetic, there may b implications for j and m in the future or any future children we may have ( though that is not on the cards!).

We've seen dr ch a couple of times. Generally he's been pleased with her health and progress. He's offered to refer us to Great Ormond street. Obviously, this is the best children's hospital in the county, so it's probably the way forward in the new year.
He thought Hope had hip dysplasia, but fortunately x-rays proved otherwise.
But sadly Hope does now have scoliosis (curvature of the spine). Nothing can be done about this until she's at least 2. She also appears to have some problems with the tendons in her ankles :0(

Hope is now under a speech and Lang specialist ( who I don't like). At this point it's more to do with eating and drinking issues rather than speech. Hope eats well, but refuses to drink anything other than my milk. So we've tried various cups and thickners, but what it boils down to, is it's not that she can't drink from other things, but that she won't!

Hope has been fitted for a 'bee' (a special chair). She looked so grown up in it, and I can't wait for it to come. It's gonna (hopefully) make my life easier because I'll be able to wheel her about with me instead of constantly carrying her around. She's getting a big girl now. 19lbs! I know that's not huge for a ten month old baby, but considering all the issues we had with her weight gain for such a long time, now she's doing just fine :0)

Were still making good use of 'S' the family support worker. Yesterday she came and looked after Hope so I could crack on and do some housework. Crazy as it may sound, I really enjoyed just being able to get on with things knowing Hope was happy and safe.

Then there's been the whole swine flu jab thing... I debated so much whether or not for her to have it, but given that common viruses really knock Hope, and temperatures = seizures, that the institution for mitochodrial disorders recommend the jab, and dr ch did too, I decided to go ahead.
The first time I took Hope for it, the nurse asked me if hope was allergic to eggs, which I couldn't be sure of, so we were sent away to try them.
There was no allergic reaction to the eggs, so we returned a week later, only for them not to give it to her because she had a respiratory infection. I was beggining to think she wasn't meant to have it done. Third time lucky though, she eventually had it. I have to take her for the second dose tomorrow. Reluctanly though, I might add: you see Hope was miserable after the first jab, and had lots of seizures :0( and since we are now over 2 weeks with no seizures, I hope so much the jab doesn't bring them back.

Tomorrow is a big day! We also have a 'meeting around the child'. This is where all of Hope's specialists and people involved in her care meet to talk about what they're all doing, how Hope is doing, and where next ... A good idea really.

Well that wasn't that quick an update :0)
Xxx

6 days

2009-12-04T14:25:00.001-08:00

That's 6 days...and No seizures! I cannot believe it. We've never come even close to this. Hope's sight and head control ate even improving. We celebrated, with ben and jerry's cookie dough :0D
Xxx

Oh happy days :0)

2009-12-02T10:21:00.001-08:00

Just a quick update: firstly apologies to regular readers who I know have been checking in for news...there is lots, but it's been so hectic here... So many appointments, plus in my spare time i've been on a bit of a knitting frenzy (well it's well and truly winter now) and ive been absorbed by the twighlight saga :0)
And because there's sooo much to report from the numerous assessments and specialists, I know It's gonna take a while, but the longer I leave it, the task grows....

So this is just a snippet of good news (for a change). Hope has been SEIZURE FREE for 4 Days!!!! She's never done more than 2 days in a row since the epilepsy first reared it's ugly head 6 months ago.

Considering it's December; that I can no longer avoid the Xmas music, that we have advent calendars counting down till the day lil Sam died, I am extremely happy :0D
Hope is on top form. The seizures set her back so much and Can even leave her empty of her personality when she has a particularly bad day. But because she's had a long run without them, she so happy and alert. She's been a right chatterbox and even her head control is better. Oh I hope it lasts. Forever. I know it won't, and I just hope it doesn't come back with avengence.

Any spare prayers going should be directed to Hope's little buddy, Jude, who is having a tough time at the moment www.cjengo.blogspot.com

Will try to update on all the appointments sometime this week

Xxx

An extra pair of hands

2009-11-20T10:44:00.001-08:00

For one reason or another, we aren't exactly sending away the queues of helpful relatives offering us help. With our lives being such as they are (a baby that needs 24/7 supervision, who only ever 'cat naps', endless streams of medical appointments, plus 2 other children who also have many of their own needs, chris and I were feeling rather stretched to say the least. So, we've got an extra person :0)
Just what we needed.
We had the meeting with 'B' from the rainbow trust... He assessed our needs, and offered us their services. He bought 's' with him, who throughout played with hope. When 'b' said we'd be allocated our own family support worker, I hoped it would b s. It is :0)
She started straight away. She stayed after 'b' left.
It's only been 2 weeks since our first meet, but I can say she really is a welcome addition to our family.
She's already won the kids over. And max is not easily won over. At all.

S will watch Hope for me, so that I can do housework. She'll come/take us to appointments, or pick the kids up from school when H and I are at an Appointment (it's not ideal pulling them out of school, but that's what I've had to do so far).
The service is there as and when we need it. 24/7! Her car is loaded with baking goodies and art and craft things, so the kids enjoy her looking after them. What's more; she's a paediatric nurse who has previously worked in a childrens' hospice. Oh, and ...she really is lovely!

I guess the only negative, is the reasons we qualify :0(

We've had 5 appointments this week. 3 last week. 3 again next week lol. Will update on all of those when I have the energy!!!

Children in need tonight! Will be watching it from a different perspective tonight. Jordan knitted a pudsey bear. I sponsered her to. I made a donation yesterday, but Knowing that my donation is just a drop in the ocean, and that Hope will benefit from the charities children in need fund.

A lovely community nurse, the rainbow trust and Helen house

2009-11-03T14:17:00.001-08:00

Including this week,for the next 3 weeks, we have 3 apppointments with various specialists and professionals involved in Hope's care. She has so many people looking out for her;
Her wonderful paediatric neurologist-dr ch
The not so nice specialist neurologist,
Her community epilepsy nurse 'j'
Her lovely nursery nurse
Audiologist
Opthalmologist
Visual impairment worker (lovely too)
Occupational therapist
Physio therapist
Play worker
Dietician
The lady that coordinates koalas and is chairing Hope's 'round the child ' meeting (really wonderful lady)
Geneticist
I'm sure I've missed a couple, but also know there are about to be at least 3 others who are shortly going to become involved.

I realise how lucky we are in the uk with our national health service. I know people moan, but in the whole, I've been impressed. Can u imagine having to go through insurance companies to get all this care approved?

All that said, all of these appointments create a lot of hecticness to our already hectic lives. Chris and I are keen that Jordan and max (to the best of our abilities) are not having to make sacrifices, so after school and weekends are busy with various activites. Mainly, these appointments happen during school days, but combine these with the fact Hope is throughly spoilt (rightly so), and because of her seizures needs constant supervision....something has gotta give; firstly this tends to be housework,secondly we have more takeaways than we should, but leaves chris and I utterly shattered. There aren't even days we can think 'at least we can have a lay in on ....day' because of the demands of max playing football.

Yesterday I well and truley did my back in. I can barely walk, nevermind lift Hope. With Chris at work and the Kids at school, today has been very difficult, and Hope has spent the whole day on the sofa, with me tending to all her needs from there.

Today we had a visit from Hope's community epilepsy nurse. We've met her briefly twice now, so today was good. She's really easy to talk to, caring and supportive .
We discussed Hope's prognosis, various professionals, ketogenic diet, medicines etc. Then it came to our 'support network' ....

There are a couple of people I can call on when we have a crisis, but they have their own kids, work etc. There are people who say 'if there's anything I can do ...' but a) I don't like to ask because b) I often think people just say it to ease their consciences :0/

With this in mind, 'j' told me about the rainbow trust. Basically they are the extra pair of hands we need. A 24 hour service, someone to watch the kids in the event of an ambulance needed in the night, someone to collect the kids from school if it clashes with an appointment, someone to come and watch Hope whilst I cook or do jobs. J certainly is efficient, and so are the rainbow trust. I had a call from them this afternoon, and I'm meeting with someone next week. I looked at their websitehttp://www.rainbowtrust.org.uk/
This is what they offer:

Rainbow Trust Children's Charity provides practical and emotional support to families who have a child with a life threatening or terminal illness. Rainbow Trust's Family Support Workers join the family in their own home and are there to provide practical support. We are contactable 24 hours a day for families in crisis from diagnosis, through treatment and even after bereavement'.
Though, this sounds like just what we need,I wish so much that we didn't fit into those they help :0(

J also discussed respite. Though there are services that mean I could get a break by having Hope looked after, anyone that knows me or follow this blog will know that I don't leave Hope. AT ALL! However, she told me about respite care for the whole family.
That's slightly more appealing. Though I'm not sure it will be for us . Not for now snyway. She's gonna take me to see it in the new year. Here's the link
http://www.helenanddouglas.org.uk/

And here's what they offer:
Helen & Douglas House is a registered charity providing respite and end of life care for children and young adults with life-shortening conditions, as well as support and friendship for the whole family. The two hospice houses are bright, vibrant and positive places, where the emphasis is on living life to the full, even when that life may be short.'

Again, I wish we didn't qualify :0(

This place was on tv sometime after Sam died. I remember seeing a child and their family recieving 'end of life care'. I remember thinking how lovely it was, how I wished we'd had that option with Sam. They had a 'cold' bedroom, where the parents stayed with the child once the child had passed :0( that made me cry :0(
Never did I imagine I might one day be there :0(

Y

Xxx

Halloween

2009-11-02T14:10:00.001-08:00

Halloween 07, I trudged the streets with Jordan and Max. I was pregnant with Sam. That night we discussed how next year we'd dress Sam up as a pumpkin. Of course we didn't get to, and as we walked the familiar streets on Halloween 08, we missed having our lil pumpkin. But we had hope, that the following year, we would get to dress Hope as one.
Even the kids had happy tears when we dressed Hope up this year.

Of course Sammy was not forgotten; we bought him lots of goodies (as we did last year). Here's Hope looking after Sam's vampire teddy and balloon at Sam's garden.

And here's Sam's spooked up garden. Some might think it a little bad taste (ok perhaps the skeleton is, but the kids chose that, and i wasn't about to go into it with them). Perhaps it's also a little wierd to take photos of my kids at the cemetary...I wish there was some other way I could get a photo of all my kids together :O(

Isn't she just lush? I made the mittens to keep her handies warm. I made them quite big, and HOPE she'll get to wear them next year too! Mind you, think she'll be a witch next year. We saw some really cute outfits, and Jordan likes the idea of them dressing the same.

Xxx

First toothbrush

2009-10-29T13:24:00.001-07:00

Hope has decided that 3am is the new 7, and a good time to start the day. Needless to say, I'm pooped. So very quick blog just to show u her having her new peggies cleaned ;0)

Real progress!

2009-10-24T11:36:00.001-07:00

Hope has been on top form the last few days. She's even more of a joy! The seizures *touch wood* are almost non existent (just 4 yesterday, none the day before and none yet today).
And she's really coming along.

I was looking after my lil niece on Wednesday, and with it being half term felt I needed to get them all out of the house for the day (for my sanity). So we went to 'jolly roger's (soft play centre). I didn't for a second think Hope would care where we were or enjoy this new place. I was wrong!
We all went on the bouncy castle, and Hope absolutely loved it. She was shouting her head off and making her funny woof laughs. Then..........................
She lifted her left arm...... Turned into me......and did a huge smile......she HUGGED me! My heart felt like it could burst! Then she just kept doing it again and again and she was very pleased with herself. And this was not my imagination ; I have witnesses!

Later, max insisted on carting her about;under tunnels, up things, down slides.... I could see people looking. I think they probably along the lines of 'omg that terrible mother is letting that little boy drag that little baby all over the place' because Hope looks a lot younger than she is. Anyway, I'm well past caring what other people think.

That same day, we had a fiasco with boots losing the Honkey meds :0( which led to trying every pharmacy in Swindon and beyond to try and get her epilespy drugs, and then calling the childrens' unit who said to bring her in. They were going to admit her (because she is soooo dependant on these drugs) but fortunately someone was smart enough to track down a stronger adult tablet of her meds which I was then able to dilute. Phew!
In bed that same night, she showed me that the hug session earlier was not a one off :0)

Thursday we went to Koalas. Jordan and max came. They had a great time making and playing with playdough. I think it also did them good to see that Hope isn't the only disabled child.
Hope's playworkerd were impressed with her alertness and smiles (she usually sleeps during these sessions). We also had an appointment to see Hope's visual impairment teacher. She's a really lovely lady! She hadn't seen Hope for 3 months and said she could see a massive improvment ;0) hope does Now look in the direction of sound, and sometimes looks at things, especially lights when she's in the dark. Hope is just begining to be able to find lights when they are moved (though she's not able to 'track').

Hope also showed that her head control is improving. She can briefly raise her head whilst laid on her tummy!

Last night.... I'm still in shock about it to be honest... She slept through the night!!!!!! At best, Hope has only ever slept 3-4 hours. Many nights she wakes hourly. But last night she went 8 hours! I woke a couple of times to check on her, and this morning I was worried there was something wrong. I'm sure it's a fluke. I hope it's the start of things to come. But I won't hold my breath!

These may seem like teensy achievements. I know in contrast to the norm, they are... But she's not the norm.... She's extra special, and I'm so very proud of her!

I'll leave you with a poem emailed to me by a lovely friend :

A handicapped child has a special life,
But with lots of hard work,
And plenty of strife.
She may not walk or talk or play,
In her own world she's locked away.
These children are sent from heaven above,
They are angels on Earth for us to love.
Their time on earth may only be short,
But there's lessons from them we value being taught!

Don't turn your back or walk away,
'look at that poor child' I hear you say.
'she is not poor!' I want to yell,
She's rich in love and doing well.
This poem comes from my heart,
This child has made my heart tear apart,
But her smiling face, I just have to picture...
A precious daughter, who makes lives so much richer!!!!!

Need I say more???

Xxx

TEETH!!

2009-10-20T11:19:00.001-07:00

I can't quite believe it; at dinner time today, Hope let out a big shout and I caught sight of 2 lil teeth. I put my fingers in to check, and sure enough... 2 tiny, but perfect lil teeth broken right through!

Bless her, she seems to have done it fairly effortlessly; no crying, fever, dribbling etc. It might help that she's been rather knocked out the past 2 days because I had to increase her meds again.

She's been on top form again today. Very noisy. She even seems to be aware of her hands today; she seemed to be thinking about grabbing her mobile, and she yanked my hair earlier and has been putting her fists in her mouth (not surprisingly on the latter).

It's slightly bittersweet .... It means she's growing up... Well her body is....
It also may mean I need to stop breastfeeding. I fed max till he was over a year old. But that's cause he was able to learn quickly not to bite me.I'm not sure if hope will be capable of that. Touch wood it's not going too badly so far. Just once!

Jordan and Max are on half term now. We've had a lovely day of Lego, knitting pudsey bear, and making jelly and angel delight. I love having them home. I've managed to rearrange a couple of Hope's appointments. Though there are still a couple, I didn't want their holidays to be dominated by hospital appointments.

I spoke to the occupational therapist about Hope's highchair yesterday. She's gonna come out and have a look at her in it, and bring along a 'special' one too to see how she gets on. At the end of the day, I've got to do what's best for Hope.

Xxx

Honko's highchair. Take 2

2009-10-17T11:53:00.001-07:00

I had bought a pretty pink, but also pretty standard highchair for Hope. It was no good. We tried it once, and because it was just an upright seat with no recline and only a 3 point harness, she basically just slithered down in it. I guess I Hoped it would be ok one day. In the time being, I've just had her on my lap for her feeding times.

Hope had physio on Thursday (which she slept through). I had a conversation with her occupational therapist about the situation and enquired what might be available.

This morning, I had a note from her therapist along with a catalogue with 'special' highchairs we could have.
I suppose they aren't too awful, but they are rather heavy duty looking. Like her 'special' chair.

So we were in tesco's today, and they had the lovely fisher price rainforest highchair half price. We bought it. It's the dogs' dangly bits as far as highchairs go; 5 position recline, 5 point harness, 7 heights etc. Plus it looks nice! Hope did much better in it than her pink highchair. Guess I'll sell that one.

I'm still in 2 minds about whether this is a wise purchase... Or whether I'm just delaying the inevitable. Ie; having 'special' equipment. Hope probably would be better in one of those highchairs. As you can see, she's still a bit of a wonky honky (her head is inclined to go to the left). Clearly she found it comfy enough.. After her marmite sandwich, pear and yogurt, she fell fast asleep :0)

Sorry for lack of updates, but it's kinda been a case of no news=good news. It's been fairly uneventful apart from still chasing rainbows.... That is trying to control these blooming seizures again :0(

Xxx

2009-10-17T11:29:00.001-07:00

8th October

2009-10-07T15:37:00.001-07:00

This time 2 years ago I was excited about the next day. It was our 20 week scan with Sam. I couldn't wait to find out whether we were having a boy or girl, but hoped secretly for a boy. I was so naive. It never crossed my mind there could be something so wrong. On the 8th of October 07, we found out we were having a boy. But that his chances of surviving were less than 50%. we named him Sam which means 'against the odds' and 'God has heard'. We drove away from the hospital and Leona lewis' new release 'bleeding love' played on the car radio. Sam's song. We had it at his funeral.
On the 9th of October we were at the john radcliffe hospital for the first time. The first of many! On this day we were told Sam's chance of survival was about 30%. I had an amniocentesis .
Sam's chances went down to 5% later. We fought. He fought. For 16 hours. My lil soldier. I miss him every second of the day :0(

On the 8th October 08, we found ourselves at the all too familiar Oxford hospital. Our baby girl, who just weeks before had been discharged from this hospital with an all clear had been referred back here because of enlarged ventricles. Another amniocentesis.

This year, we have declined the john radcliffe's invitation for the 8th and 9th of October. This was when they were going to admit her for the biopsies. Spooky hey?

Well, get this... Max who plays football all over the country now... Has an away match this weekend. Any guesses where? Oxford! Of course :0$

Hope's ear infection seems to have cleared up. We have been blessed with a few days of bliss. A happy, smiley noisy beautiful alert little girl. Today hasn't been as good. Hope hasn't been as happy and has had some nasty seizures. One so bad, packed her bag for the hospital, whilst considering dialling for an ambulance. After 45 minutes it passed. But she's had some more nasty ones so I've upped her meds this evening. She's now on 100mg per day of vigabatrin.

Tomorrow we have a busy one! That's an understatement! We are watching Max's assembly at 9, a check up on Hope's ear at 10. KoalAs at 12-2:30. Max has training from 4:30-7:30. Hopefully I won't get a chance to think too much about the 8th October. Hopefully we will avoid the john Radcliffe. Well, all hospitals for that matter.

So, that's 2 years of our run of not such good luck. Hopefully things will start working out for us?

Xxx

Fame!

2009-10-04T12:02:00.001-07:00

I wonder how Many other 8 month olds have been to the cinema 4 times! Today Hope went to see Fame! She was so excited that she woke at 4am and didn't go back to sleep till 9. Mind you, this was a good nights' sleep for us both 11:30-4:30: a whole 5 hours stretch which is pretty amazing compared to most nights when she wakes every hour. This morning Honko clearly felt well rested because she was sooooo alert and playful. She was really paying attention to her light up toys (it was still dark, though we saw it get lighter). She was also using her hands a lot; Grabbing onto things and touching me. Not sure how intentional these actions were, but definitely a step in the right direction.

The antibiotics have kicked in, and she no longer has a leaky eaky. She must have been feeling rotten, and now much better. It's so good to have her back to her happy self. Today she's been happier than she's been in weeks. She hasn't even cried all day!

Hope dressed appropriately for today's film: Leg warmers! (see photo). As always Hope was beautifully behaved. I think she really enjoys the cinema. It must be the dark, with the light of the big screen and all the noise. Oh and maybe the milkybar buttons she had today.
As usual she let out a few excited shouts, but no crying.

Today Hope tried a new food. Avacodo. Of course she ate it all up. I am yet to come across a food she dislikes *touch wood*. she also had some sweet potato (one of her favourites), followed by a milky bar dessert :0) mmmmm.

Today I have enjoyed my honkiplops soooo much. We just had a bath, she's just having a feed, and we're all gonna watch Xfactor. Sometimes it feels like I have it all ...

Xxx

Panic! Poorly Plonky

2009-10-01T12:41:00.001-07:00

Did I mention that I took Hope to the out of hours surgery on Saturday? She had a high temperature despite calpol, and I suspected an ear infection because she seemed to be rubbing her ear. Anyway, the doctor checked her over and said he didn't think she had any infection, but probably a virus.

I've been concerned the past few days because hope has been VERY sleepy (which is not like her at all), and she hasn't been very alert or noisy or smiley. I was beggining to wonder if this was the onset of her progressive disease.

This evening I had her on her playmat, all of a sudden I noticed a pool of fluid on the mat, coming from her ear. Omg, I paniced. Brain fluid?
I rang the doctor immediately, who said to bring her straight in. She has a very bad ear infection (thankfully). He said it was so bad, he couldn't even see in her ear because of all the 'gunk'. I did question him that it wasn't something related to her other many issues, but he was certain it's a nasty infection. Hope is now on amoxicillin. He wants to see her again in a week.
Poor Plonkey. No wonder she hasn't been herself. Hopefully she will be again very soon.

Today we went back to Koalas. Though last time I went and thought it wasn't for us, I wanted to give it a chance. I'm glad we did. Even though H pretty much slept through it, I spoke to a couple of the mums today and they were really nice.

We also had a meeting today with the lady who runs the centre. Hope is now on the waiting list for portage (a special needs teacher will come and see her at home once a week to work on things). I have another meeting with this lady next week about claiming disability living allowance. I've been reluctant to claim, partially denial, and partially because I see my role as hope's mum isn't one that I need to get paid for. However, as was pointed out to me, I am doing more for hope than one would normally.

Love always
Xxx

Check me out! (8 months)

2009-09-28T12:45:00.001-07:00

All about me :0)

Today I am 8 months old!
Mummy, Papa, Jordan and Max think I'm the cutest baby in the world!
I have to admit; I do have the lovliest chubby cheeks and cute chunky thighs.
My hair style is a source of amusement, but I'm working on it.
I now weigh 7kg which is a massive achievement for me; for so long I wasn't even on the growth charts. But now I'm storming my way up them, and am now on the 9th centile.
Unfortunately, my head still hasn't made it onto the charts at a teensy 40cm. Shame they don't measure it round my cheeks :0)
I still have my baby blue eyes.
With eyelashes some can only dream of! All curled. No mascara required.

Some might say I am rather spoilt...
You see I'm not one of those babies who's content amusing themselves. If I'm awake, I need holding, cuddling, feeding or entertaining.
Mummy still hasn't left me. Not even with Daddy. We are almost one person.
I am mummy's little helper. We do jobs around the house together- me in my babasling.

I'm still on the mumma milk whenever I ask, but have taken to solids really well, and can now even manage lumps and the odd bit of cake or chocolate.
My favourite foods are; sweet potato, milky bar, roast dinner and yogurts.

My very best thing to do is have a bath. Especially with mummy.
I love it when she holds just my head, so that my body floats, and I kick and splash and wiggle my little body around. I always have a good scream when Daddy gets me out.
I also love hanging out with my big sis and my big big bro. Last night we all laid on my mat and were putting our legs up in the air. I was shouting my head off.
I love having no nappy on!
And thoroughly enjoy a full body massage by mummy including this little piggy.
I enjoy doing 'row row row the boat' and mummy's 'ahhh-rooo' rocking.

My favourite toys are my storytime bear, my plonky puppy wa and anything else that's really loud.

I do really like the sound of my own voice and can make some really loud noises. Right now, I'm having a poo. I'm not very lady like in that department and always grunt whilst doing them :0)

Sometimes, I worry mummy by sleeping too much. But then other days I make up for it by only sleeping for 1-2 hours all night.

I can now roll from my front to my back- that's largely because I hate being on my front.
My head control is coming along. Somedays it's better than other days. I still can't lift it when I'm on my front, but I'm less wobbly when mummy holds me upright now.
On a good day, I can sit in my bumbo seat, or even go in my door bouncer for a few minutes, so long as someone is there to support me incase my head flops back.
My eyes are the same; good days and bad. Sometimes I can barely see a thing, but other days I look right at things and people.
I may not be doing all the same things the average 8 month old are does, but for me, all these things are massive achievements. I AM FAR FROM AVERAGE! I am just soooo special:0)

I have defied the odds by some of my achievements.
Even Though I have so many problems, I still laugh and smile.
I have made my family so happy.
I am so loved by so many.
I have touched the hearts of people I've never even met.
I have made many cry, but also smile.
I have taught so many people, so many lessons.

Thank you for following my life.

Love from
Da baba Honk
X

Just for the record; my big big brother Max, Still hasn't called me Hope!

Enough is enough! No more tests!

2009-09-24T09:09:00.001-07:00

Today we met with a new dr. He's from Oxford. I tend to use abbreviations on here for doctors names, as I feel maybe it's not my place to say their full names. Especially if I'm gonna slate them. Anyway this new dr, who I will refer to as dr p, is gonna take a slating, but he has such a funny name, I can't help but try to share it with you; his first name is the shortened version of Micheal. His second name rhymes with his first name, and is also the name of a kind of fish! ( beggining with a P) lol . Guesses to my inbox lol

Mad Auntie Mary and Jamie came along with us today to take us and for moral support . I needed it today. I was hoping for no more bad news, but suspecting we may recieve the PDCD diagnosis. I also suspected that they may want to do muscle biopsies.

So far, all the results are inconclusive. What we do know, is that Hope has a mitochondrial disease :0(
They have still not yet ruled out PDCD :0(
They still do not have all the results from the previous lumbar puncture. But they, suspect the results will be inconclusive.

So, what next? Dr P wants to admit Hope to Oxford, to have more blood tests and ANOTHER lumbar puncture. As if that's not bad enough, he wants to anaesthetise her and do muscle and skin biopsies.
I questioned the increased risks of anaesthesia associated with those with mitochondrial diseases. He admitted there is an increase risk, but there are more risks due to a) her being a baby, b) her brain abnormalities, c) her being eplileptic. As far as I'm concerned, that's a lot of risk factors. He, felt the risks were still small. He said if it were his baby, he'd take the risk. Yeah right!

And the point to all this?
Will they have definitive answers? Not necessarily.
Will they be able to make her better? No.
Will this change her treatment? No. All they can do, is treat the symptoms ( which is already being done).
What it MAY do; is give us a name (of a mitochondrial disease).
And if we know that, we MAY have a better picture of what the future may hold... Tell us how long we might have her for.
2 years? 5? 10? 14? It's never ever going to be enough. Whichever one of these diseases it is, it's not going to be long enough. But, I don't want to know. For weeks I have had in my head 2/3 years. With PDCD that's about it. In some cases longer. But really, it's awful to think that's all. If it's that , I don't want to know. It spoils the tiMe we have. Also, by not knowing, I am not decieving Dolly and Moo. Anyway, who really wants to know?I mean... None of us know how long we have....but if someone were able to tell you, would you want to know? I wouldn't. So, I guess the moral to this blog is; live each day as if it could be the last! Enjoy!
I'm certainly enjoying each day we are blessed with Hope's presence, as I am all of my kids.

I have ( and Chris agrees) decided to refuse these tests. They seem pointless. They serve to purpose or benefit to Hope or I. They only carry risks and more pain.
So that's it, dr p. Enough is enough. Leave my baby alone. She's my baby, not your guinea pig. It's quite empowering! No more tests!

I may change my mind along the road. Maybe if Hope starts getting sick. If, along the road we decided we need to know more. If, at some point it seems as though there may be some good come from knowing. I will discuss this decision with dr ch of course, but i think he'll understand, Even if he doesn't agree.

Xxx

Nasty lumbar puncture

2009-09-15T13:20:00.001-07:00

Coming second only to the day that Sam died, and then watching his tiny coffin lowered into the earth, today was the most painful of days. Watching my baby in absolute agony was painful beyond words :0(

The day got off to a sad start when a newborn baby boy in his pram came to the waiting room wearing exactly the same blue and White striped hoody jacket that Sam wore to heaven. Mum recognised it straight away too.

Chris couldn't make it today. He had to leave work unplanned yesterday, and his work are... Well, I think they're beyond being sympathetic.
Auntie Mary (Hope's god mother) usually comes along to the appointments, but her lil Jamie has croup, so we're keeping a safe distance for a few days. Realising that today wasn't one of the appointments I felt I could do alone, I called my mummy. Thanks to an understanding work collegue, she managed to get out of het shift and come along. Though bless her, she cried.

I hadn't realised I wouldn't be welcomed to be present for the procedure. I was warned that it wasn't a nice thing to witness, but understanding my need to be there, the doctor agreed, that providing I stand back, don't faint, nor touch anything, I could stay.

I can't say I wish I didn't, but it was horrendous :0( Hope fought and screamed an angry cry as they positioned her for it; curved her spine and held her head down. That was bad enough, but the worse was once they were drawing the spinal fluid. I've never heard her cry like that before. It was the saddest cry ever. Like she'd given up :0(

Oh, and more bloods!

That done, Hope had to stay for a couple of hours just to make sure she was ok.
So that was another exhausting day spent at the hospital. We are there for the 3rd day in a row tomorrow to see the dietician!

Auntie Mary called when we were on our way home to say she'd been thinking of Hope all day and bought her a lil something. I imagined a teddy or something. To my amazement the crazy woman bought Hope her second diamond! The first can be seen in the top right hand corner of this blog, in the silver 'hope' bangle bought for her christening. Today's diamond is in a beautiful silver cross on a teeny chain. I know you'll read this, so again thank you sooooo much. It was completely unnecessary as you know, but hope really is so lucky to have you. As am I !!!

The nurse and doctor said that Hope's back will be sore, and she'll likely have a headache. I've kept her dosed up on calpol, but I'm pleased to say she seems her usual gorgeous self. Right now, she's hanging out with her daddy, but for extra comfort is laid on him on a big feather pillow :0)

Oh oh oh, we've had some good news...
Max was yesterday offered a years contract to play for Swindon Town! being cool, he's 'thinking about it'. But of course, he'll sign! Seems like we really do have a football star in the making. Man U here we come lol.

To everyone who sent messages today; I passed on each message, kiss and hug (gentle hugs mind) onto Hope. Thank you all for rooting for us.

Xxx

None the wiser :0$

2009-09-14T09:14:00.001-07:00

Well, hmmmph. Big sigh. After getting ready to know; I still don't. Basically, he was able to rule a few things out. It's not MELAS (which is nasty). It's not glycogen storage disease (which I'd have prefered-the lesser of all the evils), nor is it fructase biosphate (knew it wasn't that though). They've ruled out some other things too. But not my greatest fear. And what I suspected most; PDCD.
Hope has to have a lumbar puncture tomorrow. I did plan to refuse this. Unfortunately, it is necessary if we want to know. And of course we need to, in order to treat it. He is not sure it is PDCD. But that's at the 'top of his list'. ;0(
It could not be that though he said. Other very rare metabolic disorders.

On a positive note; Dr Ch was impressed with Hope today. He could see how alert she was, that she was holding her head well. I told him she was rolling now too. He said she's come a long way since the first time he met her.

So I suppose that's a good sign. I mean, even if she does have a progressive neurological disorder, for the time being, Hope is still actually progressing. Albeit slowly. But importantly, not regressing!

There's hope!

Xxx
Ps, if u didn't see yesterday's blog please have a look-photos!

The results are In

2009-09-14T04:44:00.001-07:00

Dr Ch's secretary called this morning. I was completely off guard this time when the phone rang. He's seeing us today at 2. I had so much planned today. Nothing exciting. Just stuff to do round the house. I haven't done anyhing. I'm a bag of nerves. I feel sick and shakey and keep checking the clock. Not long now.

It doesn't help that Max pulled a sicky (I think) today. So I've had to get him looked after, plus arrange for Doll to be collected from school. Chris is coming home from work early. I've done most of these appointments by myself, but need him here for this one.

I had a lovely, perfectly timed lil card come through the door this morning from a very special friend (we both lost lil boys to CDH).
Here is what it said:
Hang in there
I know things are tough
Right now and you may feel alone
But please remember,
Others care and you're not on your own.
Just try not to forget
To take things day by day
And anytime you need me
I'll be with you all the way

Perfect hey! A true friend. I am constantly amazed by the love and support from some truely special friends.

Photos - as promised

2009-09-13T13:01:00.000-07:00

6th August- Bournemouth pier in the babasling

6th September- At Bournemouth (for Max's match). Shouting at her big sis

24th August. Perfection!

18th August. Hope's favourite time of day- bathtime

31st Aug- finding herself funny :OD

24th August - looking super cute. Look at those cheeks!

21st August- We went with friends to butterfly world. Even the butterfly could tell how special Hope is :O)

We've had a nice weekend. Fairly quiet apart from football. It was a relief when Friday came because I knew we'd not get any results over the weekend, so I could pick up the phone without having butterflies in my stomach. I am definitely happier in this state of denial! No doubt we'll hear something next week.

Xxx

No news

2009-09-10T13:23:00.001-07:00

Hiya. Thought I'd best just pop on and update that there is still no news. I know lots of Hope's 'aunties' are checking in often to see if there's any news. Thank you all for your prayers and messages of support.

People have suggested I call for results, but I know when dr ch knows something he'll be on touch. Also, I've got to the stage where I prefer not actually knowing , though deep down, I do know (hope that makes sense).

Some have said 'no news is good news'. I wish that was true.
'if it was something really serious, you'd know by now'. Not necessarily true.
'she's strong' 'she's a fighter'. I know, but how much can she do if her metabolism is fooked?
'everything will be fine'. I've heard that before. And it wasn't. Sam died :0(

Anyway, I am still hoping I'm wrong. I will eat my hat if I am. Will happily post pics of me doing it too! And I will, i swear be the happiest person on earth... Just so long as I get to keep her!

Anyway, she's had a great week developmentally. The seizures are still present, though subtle, and infrequent (only upon waking) despite now being on the highest possible dose of vigabatrin.
But she's been alert, noisy, looking (sometimes) amused by playing peeka boo with a muslin or her mookie (from auntie kel and Paul). Her head control is really good again (though not by any standards of a 7 or even 3 month old). Yesterday she sat unsupported for about 3 seconds. And today, she's really mastered rolling from front to back. This evening she's been doing it over and over again :0)
Hard to believe there could be a progressive disorder when she's still developing.

Today was our first session at koalas (a special needs playgroup). I'd been really looking forward to it, but felt disappointed.
1 Hope slept the whole time (apart from 5 mins we spent in the light room before she fell asleep again)
2 hope was by far the youngest
3 I didn't really feel I had anything in common with any of the parents
4 a lot of the parents make use of the parents room, where they sit and chat, whilst the children r looked after by their key workers. I'd probably have enjoyed it more if I went in there, but lets face it; if I haven't even left hope with her dad in 7 and a half months, I'm not going to leave her with someone I've just met.

On a positive;Hope's key worker seems really nice. I'm sure Hope would like the sensory room and toys if she was awake. Oh and there was this one lil boy 'H' who just melted my heart. I suppose he's the one most like Hope, but I guessed he probably had CP. He was adorable and loved Hope. Which he showed by trying to say her name, touching her, and dribbling over her (which I didn't mind in the slightest btw, cause he was that gorgeous!)
Since we've waited for this placement; I will persevere.

Bye for now
Xxx

Ps I promise to post some photos over the weekend. I realise it's been ages, but I can't do that on here (my phone)
Xxx

Resolution over a milky bar

2009-09-04T15:01:00.001-07:00

Ok, so it's probably only temporary resolution, but for now, it's resolution.
I'd cooked up some fish and potato in milk, which Honk devoured, so I decided to give her the remainder of her milky bar from Nanny.

Not quite sure how or where the idea came from, but, for now, this is how I (am trying) see it....
When you rent a DVD, you don't think about taking it back before you've watched it, you don't dread returning it ( even if it's a great movie), you enjoy it. Then when your time is up, you return it.
Hope is mine. For now. I must try not to think about when, how etc, but enjoy every second.

There's a poem. I'm not quite sure of exact words (perhaps one of my sands friends can add it as a comment if they know the one I mean). It goes something like this...
A little flower,
Lent not given
To bud on earth
And bloom In heaven

Poor Chris took a bit of a blow today I think. We were out buying pretty clothes for the girlies (max was round his
Mate's house). Outside mothercare we bumped into hope's birthday buddy ( his
Mum and I met through sands cause like me she lost a baby in 07, then despite being due about 3 weeks apart had our next babies on the same day on the same hospital). Anyway, we stood and chatted for a few minutes. It was nice to see them. It was only when we got home that chris said he hadn't realised how delayed hope was until he'd seen her birthday buddy. It's not like we were even with them for long, or that the lil chap was
Mobile ( cause he wasn't- he was just in his pram). But he was socially aware. Of himself and others.
I suppose cause a) he's a bloke, b) he doesn't come into much contact with babies c) cause her birthday buddy represents a direct comparison, chris had
Overlooked hope's disabilities. That's a good thing though really. Like I said to
Him, hope is hope and she does the best she can do!

I'm sure tomorrow I'll b back down again. But so long as I can keep picking myself back up...

Still no news on results (obviously). Next week I expect. I

Happy birthday jude!

2009-09-02T13:22:00.001-07:00

Here goes...
More positve...
I'm really trying. I am resigned to the fact that it will be pdcd (though still pray it isn't). I am in such turmoil; one
Moment in deepest despair, the next, enjoying the life we have now.

But I felt compelled to blog. I've just read the latest blog by Jenn, who is mummy to a very special lil boy called jude. Him and hope are similar in just sooooo
Many ways. His mom says the same. We've been following jude's blog since I was pregnant with hope. His mom was given a similar prognosis to us, but like us was blessed with 3 months of that wonderful 'normal', then the seizures struck.
I've said before how jenn's blog has helped. That although the path we are on is scary, it's one we've watched jenn and her family walk before. Although literally oceans apart, I hold jenn, jude and her family very close in my heart.
Today jude turned 1!
Jenn (as always)has written a beautiful blog today. Go check him out and wish him a happy birthday www.cjengo.blogspot.com

Get your tissues ready. Jenn's love for jude is, well she just lurrrvveess him so much-like I love hope. I hope with all my heart that I get to write lots of birthday blogs

Oh, still no news. I have thought about calling dr ch , but I know there's no point. He will call me when he has news. Till then...I wait...I hope

Xxx

Still waiting, but I know :0(

2009-09-02T04:48:00.001-07:00

I just know it's gonna b the worst one. Everything I've read points to it and explains everything.
I thought we'd have heard by now, but I know already ;0(

My poor Jordan and Max
My poor honkeyplonk

How
Much can one family take?

:0(

Last night hope was just the cutest. At midnight . But instead of hoping she'd fall asleep, I just enjoyed her and took tons of photos
That's all I Can do

Sorry Sammy :0(

2009-08-30T11:55:00.001-07:00

We live 5 minutes away from Sam's garden (the cemetary). We visit often. We
NEVER drive past without popping in. But today, I said to Chris I couldn't go there.

I am afraid I will just break down at Sam's . You see, it's a family plot. So there's room. But it was meant to be for me and Chris a long time in the future. Not Hope!

I don't want to have to have pink writing added to the pale blue. To have to make room for more toys :0( I really don't have the strength.

I know noone imagines they would. But Before, well I guess I didn't give it much thought. I never really believed Sam would die (though equally, I also never imagined Sam coming home). Last time, we kinda just got through.
But now, I know
And I know I can't do it again

I love you Hope
I need you
I promise to always look after you
Forever
I'll spend the rest of my life caring for you
I'll never resent doing that
Or wish my life was different
Just don't ever leave Mummy
Please Princess Plonkey Pie

Pyruvate dehydrogenase deficiency

2009-08-30T03:20:00.001-07:00

That's what I think it is. Now I'm wishing and hoping it's MELAS. But so
Much seems to ring true of pyruvate ...
Microcephaly- check
Ventricular diAlation - check
Lactic acidosis - yep
Hypoplasia of corpus callosum-
check
Loss of head control - kinda
Failure to thrive - yeah previously
Seizures - yep

If it is this, and I am on my knees begging and praying it's not ... We won't have her long :0(

Shit

The only thing keeping me going is the hope that I am wrong.
That this would have been picked up on the amniocentesis (but I'm not sure that it would have because although genetic, it is evident on the Mitochondria and not the chromosomes- I think)

Apart from loosing my precious lil girl, whom I cannot imagine life without...
I can't stop thinking about Jordan and max. How will they cope? How do I tell them? How can they recover, go to school, be children, be happy?

Oh my, how my hopes have changed over the past few months:
In the beginning I hoped the medical profession were wrong.
I hoped she'd walk and talk
Live a normal life
I said goodbye to those hopes a whole back.

I them hoped for independent living
Mainstream schol
For her to be happy
But knowing I'd always care for her
I said bye to independant living and mainstream school a few weeks back

Earlier this week,
I hoped for adulthood
Teenage years even
I still do
But think I may have to lower my expectations and hopes again

What is left?

Just to hope I'm wrong!

Her name now seems rather ironic :0(

Keeping busy

2009-08-29T13:15:00.001-07:00

I haven't had much chance for feeling gloomy today; Max had a 10:30 kick off so it took great effort to get out the house that early (God, I'm i'm in for a shock when they go back to school on Tuesday lol).
I managed to give her honkness her cereal, but her 1oz of infatrini with her meds in ...well, it's beyond a joke. I took it to footy, I tried, Jordan tried, chris tried, and even Sam (a fellow soccer mum) tried. The match was over and there was still more than 3/4 of an oz left, so we came home and she finished it.

I was concerned that her getting the full dose of meds nearly 2 hours late would result in lots of seizures, but thankfully not. Infact, and I suppose I overlooked this is my doom of yesterday... Yesterday was ....
SEIZURE FREE!
And touch wood...
So is today (so far)
That's on 800mg of vigabatrin.

Hope was given some cash my her god mother the other day. I was going to bank it for her, but yesterday decided to go and buy some nice things.

After much deliberation and trying out, we bought a 'babasling'. It's fab! Today Honk has been helping me round the house whilst breast feeding! And then in 2 other positions too so she can look about. I'm really chuft with it.
We also bought a BEAUTIFUL grey knitted Humphrey's corner dress. It was more than I'd usually spend on an outfit for Hope, but soo worth it!
And we bought some lil noisy toys for her too.

We've been to town too. A bit of last minute getting new school stuff.
Then we've come Home and hope has just been in a delightful mood so we've been doing lots of playing.

Hope has been rolling from her front to her back (mainly because he Hates being on her front). I've been getting her to look towards sounds (not much I know, but this is something she really needs to work on). Also, I've had her sat right up in her rocking chair, which positions her feet just at the right position for her playstation ( the fisher price superstar thingy). She seems really pleased with herself when she makes the music go off.
Infact she enjoys it so much, that we are all curently sat in darkness listening to 'if u r happy and u know it...' so she gets the full effect of all the flashy lights.
She's really going for it now!

Now, u may think I'm insane, but we r all pretty convinced Sam was playing with his lil sis earlier. She was in her rocking chair in Sam's corner ( where his photos and special things are. Hope had fallen asleep in her chair so I turned off the swinging motion. A few minutes later it was back on. Chris turned it off. It came back on. Then Max turned it off. Guess what! So we decided it must be Sammy being a monkey. How cool :0)

Over and out
Xxx

Dead inside

2009-08-28T12:48:00.001-07:00

Can't believe there can be something sooo wrong :0(
I Just can't imagine life without Hope
Or seeing her get really poorly

My heart feels dead! I'm just going through the motions of life. But it's not fun

I keep trying to think positive. ...That perhaps it won't be that bad...
But they r bad!
I can't see past the dark clouds
My heart is heavy :0(
I wanna cry, but can't for sake of kids

The more I read, I just can't pin down which one of the 4 she has. But I suppose it explains a lot; her failure to thrive, her need to feed almost constantly, the fact she still doesn't sleep through the night on a regular basis.

I just hope we get the results soon
Then I can learn more
And find out how long
:0(

I can't do it

2009-08-27T16:35:00.001-07:00

I can't do it.
Again.
I can't....
.. kiss 2 photos goodnight.
... Have 2 special stars in the sky.
...Kiss cold lips goodbye.
...Watch my dreams lowered into the ground
...Break Jordan and max's hearts again
...Watch them grieve
...Helpless
...Unable to fix them
I just can't

I know I said I'd not research/obsess anymore.
I have.
It's not good
There are 4 possibilities
None are great
2 are nasty.
Painful. Premature ....
1 I can rule out because of the ultrasound revealing normal kidneys and liver
There's one I guess I'd rather it be, but knowing our luck, it won't be.
And still, that one is not good
Far from it

To top it all, 2 of the 4 involve an auto recessive gene pattern
Which would mean I'm a carrier
All my kids would have 25% chance of having it
Or being carriers

What on earth did we do to deserve this?
This life stinks

Even Chris is walking slower
He knows we can't do this
Again

I think this time, would be worse

If that's possible

:0(

I was so prepared to care and look after Hope. To dedicate the rest of my life to looking after her. Now I may not even get that honour

:0(

Life goes on

2009-08-27T06:58:00.001-07:00

Well, I've pulled myself out of my
Big black hole once again. No doubt I'll find myself back in it again some time soon, but until we get results, I have to get on. I know we are not going to get good news, but until we know which condition it is, I need to stop researching/obsessing etc. But at the end of the day, there is something seriously wrong. The lactic acidosis which has led dr ch down this path is a process involved in rigor mortis :0(

We had an early start today. Lil Max (8) was picked up at the crack of dawn and is now in London to play in goal for Swindon Town F.C against Fulham. Incase u don't already know, Max was scouted last year and has quite a reputation for astounding goalkeeping.(Proud mummy gloat, but think I'm allowed).

Jordan's Auntie Tracey offered to have her today. Thanks Trace. So they were going to town and swimming with lovely lil Faith (my niece).

Which left Honk and I free to go to her first physio and occupational therapy assessment. I'm not quite sure what I was expecting, probably excercises and manipulation, but it wasn't. The 2 ladies were lovely and very tuned in with H. They basically just played with her, seeing what she could do. They said I am doing all the kind of things I should be, that Hope is quite strong. She proved her dislike of being on her front. She impressed them by rolling over. We need to work on head control. Which I knew. But they said her head doesn't lag, her main problem is midline control (keeping it straight). But then Hope is gonna struggle here because the cerebellum
(which in hope's brain is hypoplastic- under developed/small) is responsible for balance. Plus because she is visually impaired, she isn't getting visual input to help her. Overall, though it was a nice experience. They are going to see her again in October.
Oh, and they are getting her a special chair (like Jude and Kendall's). They think she's held too much- lol. Can't say that's going to change much :0)

Had a bit of an embarrasing moment just now. Anyone who has breastfed will sympathise. Just waiting for bus home and felt the 'let down'. Because we've been out it's been a long time since Hope fed, so I get in the door and see I have 2 big wet patches on my top. Oh well

Well, I have to say, I have been overwhelmed by all the messages of support and kind words. I actualy had a really nice message last night from an uncle I haven't seen for many years (hello uncle rick and kim), and so many messages from friends just saying that they are thinking of us. My phone is going off even more than usual. And that's a lot. I know you all feel powerless to help us. And really there is nothing anyone can do to change how things are, but it does mean a lot. At some point, I will have to go through replying to u all, and asking for your permission for me to copy and paste your messages onto here. I'd like to do that, so they are all in one place iykwim.so if u r reading and u don't mind me doing that it would be great if u could just drop me a message saying u don't mind, it would save me a lot of work. On a less positive note, I suppose, there are some people I'd have hoped to have heard from, and haven't. But hey ho.. U win some ....

My house is an absolute shambles! I need a maid. Or something. And a chef to mention it. But I guess once hope has finished feeding, I'll crack on and do my best whilst my heart is not so heavy.

Much love
Xxx

I feel like I'm falling

2009-08-26T10:00:00.001-07:00

Me again. 2nd depressing blog in one day. But this is my only release. I want to scream really loud. Bang things. Cry. But I can't. I can't even talk to anyone because I don't want Jordan and Max to hear anything. So I'm here. Tapping away on my iPhone. Hope is at the milk bar (ie me) as usual. Jordan is on the laptop. Chris and max have gone out to get trainers and lunch for max tomorrow. (my lil max is off to London tomorrow by himself. Chris couldn't get the time off work, and Swindon Town can hardly play without their keeper, so he's going with the centre of excellence director).
On the surface, everything seems normal. But it's not!

I feel like I am grieving. Again. But inside. I feel like my legs could give way. Not sure how long I can keep up...will just keep trying for the sake of the kids.

We visited my gran today. She'll be 80 this year. I didn't tell her anything. As much as possible I've avoided sharing bad news about HOpe with her.
But she knew.
She was saying how perfect her skin is. The softest ever.
So bonny
Such blue eyes
That she's worried about Hope.
That she doesn't want to upset me
But ....
That I should just enjoy her
Because we don't know how long she's got

:0(

I keep thinking about that. I mean we don't know it's M.E.L.A.S yet... That's what Chris keeps saying.
But, as far as I can see, and my understanding is this...
Her body is not functioning properly
The acid will build up in her organs
And fail :0(
How long? Years? I fooking hope so. But how many? 5? That's not enough. Nor is 10. Or 30.
I shouldn't be thinking of this. I don't want to

I keep hoping they are wrong. But it's not going to be nothing.

Thank you all for the lovely messages by the way

Feeling proper sorry for myself ;0(

2009-08-26T02:56:00.001-07:00

Me and Hope are still in bed after a rather sleepless night. I don't seem to be able to muster the energy to get up and face another day. All seems pretty pointless

Somewhere on Hope's blog there's a sticky that says 'everything happens for a reason...' think I'll remove that. How can there be a reason?

Was it not bad enough that I had a baby boy who died?
And of all the days in the year, he died on Christmas day!
Was that not bad enough?

Then to concieve, and dream of Hope
And them find problems with her brain.
I thought ventriculomegaly and cerebellar hypoplasia were pretty bad.
We were told she may never walk or talk already.
So the eplilespsy...
Well I thought it couldn't get any worse
How wrong
What did I do to deserve this?
Why my babies?

Dr CH did tell me not to go looking it up. Not until we know more. But I'm not the kind of person that can wait. My motto is 'knowledge is power'. But actually that's crap! I am powerless. I can only be there to love her and witness what I fear most.

I hope so much they are wrong.

And my poor big babies. Poor dolly and moo. They've had so much sadness already. How do I tell them? Do I tell them? No is the answer. I will protect them for as long as possible.

So, I put on that brave face and carry on. Wear the familar mask. Smile. Laugh.
Enjoy

Xxx

2009-08-25T12:32:00.001-07:00

I am numb.
Still don't think it's suck in.
I think it's worse than I could have imagined

We've been at the hospital all afternoon. Jenn, holly, jocalyn ( other blog mummies of babies with similar problems)u r the only ones who know how my head feels at the moment. Exhaustion. Information overload. Detatched? Headache etc

Today hope has had:
Blood tests. Oh she sobbed. It took 45 minutes of trying different veins and squeezing b they got all they needed. Urine samples taken
An ultrasound to check her liver, kidney spleen and heart
An ECG to check her heart

Oh and to top that, next week she has to have a lumbar puncture :0(

Why r they checking her organs u may wonder. So did I. Wasn't it enough she had all those problems in her brain?

Her previous blood test showed high levels of lactic acid in her blood. Anything under 2 is considered normal. But one would expect it to b under 0.5 in an infant.
Hopes was (and reconfirmed today) 5.75
This acid, will build up
In her organs. Eventually.

So. She has a rare metabolic disorder

Every cell in her body is wrong

Not as it should b

Her body is not functioning properly

There is no cure

Only treatment

It will take 2 weeks before we get the actual name of the syndrome. But dr ch thinks it's 1 of 4. All of which are fairly similar. It's bad news. He suspects M.E.L.A.S syndrome. I'm hoping
The other things he suspects r much nicer. And that it's not this

Here r some bits of info copy and pasted from net

MELAS is a condition that affects many of the body's systems, particularly the brain and nervous system (encephalo-) and muscles (myopathy). In most cases, the signs and symptoms of this disorder appear in childhood following a period of normal development.[3] Early symptoms may include muscle weakness and pain, recurrent headaches, loss of appetite, vomiting, and seizures. Most affected individuals experience stroke-like episodes beginning before age 40. These episodes often involve temporary muscle weakness on one side of the body (hemiparesis), altered consciousness, vision abnormalities, seizures, and severe headaches resembling migraines. Repeated stroke-like episodes can progressively damage the brain, leading to vision loss, problems with movement, and a loss of intellectual function (dementia).

Most people with MELAS have a buildup of lactic acid in their bodies, a condition called lactic acidosis. Increased acidity in the blood can lead to vomiting, abdominal pain, extreme tiredness (fatigue), muscle weakness, and difficulty breathing. Less commonly, people with MELAS may experience involuntary muscle spasms (myoclonus), impaired muscle coordination (ataxia), hearing loss, heart and kidney problems, diabetes, and hormonal imbalances.

There is no known treatment for the underlying disease, which is progressive and fatal. Patients are managed according to what areas of the body are affected at a particular time. Enzymes, amino acids, antioxidants and vitamins have been used, but there have been no consistent successes reported.

WhAt else is there to say?

:0( my baby

Xxx

Preparing myself for bad news? :0$

2009-08-24T09:17:00.001-07:00

I've just had a phone call from Hope's lovely neurologist (dr Ch). He wants to see her. Tomorrow! He said he has some results from some blood tests he wants to discuss. Plus do some more tests. Boo hoo, I hate blood tests. Plus he wants a urine sample. So it may be a long afternoon :0(

He asked how Hope was doing too. I told him that I had upped the meds again today (that's 800mg now) and that the seizures were still creeping up, and hope is having between 30-40 spasms a day. He said that's too much still, so I think we may end up discussing changing the meds a bit earlier than originally planned.

Oh god, I am so scared. I was shaking after the call, but now I just want to cry :0( but can't because I don't want Jordan and max to worry .

Earlier today we had the leader and a playworker round from koalas (the special needs playgroup). They were both lovely and I'm looking forward to starting In September. It will be nice to meet parents in similar situations and their extra special babies and children.

They asked me whether I had made a claim for disability living allowance and carers' allowance. To which i replied I hadn't. I guess that's because I don't want to have to. I'm still hoping I suppose that she'll all of a sudden be fine. That she won't be entitled to it. But who am I kidding? Only myself! And since my maternity money ends this month, and there's no way I can return to work yet, the extra money will help. It's just I don't want to be eligible for it :0( either of them; disability allowance because it means hope is disabled, and carers' allowance, because I am not her carer. I'm just her mummy

Oh, for an ordinary life ... :0(

Xxx

Disappointed :0(

2009-08-19T13:10:00.001-07:00

Not with honk of course! But I said a week ago or so ( I think) that we had a photographer round to try and take some photos if her royal honkeness. So far 2 photo shoots have been fruitless; they are unable to capture her true beauty, so I hoped this lady might have had more success.
Now usually, I slightly dread viewing photos taken by professionals. You know they are gonna cost you a bomb! How to choose when there are sooo many pictures you love. Not so :0(
There was really only one good photo. Well that's not true. There were some beautiful ones of her sleeping, and of her lil tootsies. It's just I really want that perfect picture; her smiling and looking in The right direction. So we haven't spent a bomb. In fact we just claimed our complementary picture. (will add to blog when it comes). The lady has kindly offered to try again in a few months. She knew herself she hadn't really captured Hope.
Oh well, just another one of those things I
Previously took for granted. Nevermind.

On a more positive note, H is now tolerating her meds and is back to her noisy smiley self today. She seemed to have lost her appetite too the last couple of days, but i now realise that that was probably also to do with the meds increAse and the sleepiness .

We've had a lovely day today meeting with some old friends at Coate water. We had a picnic and beautiful sunshine!

Thanks for reading
Love always
Xxx

Lazy blogger

2009-08-18T13:23:00.001-07:00

Sorry, I'm slacking. I blame the summer holidays. We're soooo busy everyday, then some evenings, plus I am trying to finish my uni course, and am pooped!

Last night hope came along to weight watchers, and our first stitch n bitch group. She was of course the only baby there, but everyone seemed to understand why I am so over protective of her and won't even leave her with her daddy.

The seizures are still here, so I've upped the meds yet again. She's now on 700mg per day. Once again, she's zonked. Chris is currently trying to wake her, but she's not in the mood for playtime :0( hopefully she'll be back to herself more tomorrow.

The honkeyplonk blog hit 2000 visitors today. That's a lot. Especially when I have no idea where these 2000 hits came from. Ok, so I know a few people who follow...but 40+ visitors today already. Would love to know who you all are, so if u r reading, please say hello so I know u have been :0) and thanks for following.

Promise to b a better blogger soon. Must get some pics on too

Xxx

Consultant appointment today

2009-08-11T14:48:00.001-07:00

We met with the lovely dr ch again today. All good news really; he's still pleased with her progress, though hopes for her to become completely seizure free- which we aren't, despite recently upping her doses of vigabatrin.
Mind you, her weight has increased significantly (6.15kg/ 13lbs 9oz) so therefore she needs more. She was on 500mg per day, but is now allowed as much as 900mg, so tonight I'm increasing to 600mg and hopefully that will sort her- at least for a while. I hate upping doses :0(
Her MRI has been reviewed (again). And she does have a corpus callosum! Though only a rudimentary one. But still that's better than nothing at all.

Her head circumference is below the 0.4th centile, which is a concern to me, but he's not as worried, nor surprised considering the brain anomilies.

We had to go for blood tests after. HORRIFIC is the only way to describe this. It never gets easier. They always try and get blood from her tiny veins in her hands, are never successful, upset her (and me) a great deal, and then resort getting it from her feet, which is equally difficult and timely.

Anyway, just a quick update. ... Hardly seem to get any chance at moment with chris and kids being off

Xxx

Oh, had photographer cone to house earlier to take pics. Was nice and hopefully got some nice pics. Having photos taken is something one takes for granted, but when your baby can barely see, it's difficult to capture their attention and get them looking in the right direction.

Xxx

Camping madness

2009-08-06T14:29:00.001-07:00

O
M
G
It's dark, cold, and very windy. And we are in a tent in a field! Argggghhhh. Camping with a 6 month old. Crazy? Must be!

We've been fairly lucky so far, in that we've only had a couple of showers. We've had a nice day; Jordan and max did zip wiring, max did climbing, we've had a pub dinner, then made animals out of our bodies (h,j,m and me) for the kids caberet competion, played on the park.

Hope is loving the sea air, the loud noises from the pub and being out in her pram.

But now.... J and m have freaked themselves out tellin ghost stories, hope is screaming and not taking her meds, and our neighbours are playing robbie Williams a bit too loud for bedtime. And we've gotta sleep on the floor!!!!! On airbeds of course, but still.

Happy camping :o)
Xxx
Will catch up with you when we get home (2moro morning maybe? Lol)

Sleepy Honk

2009-08-03T13:21:00.001-07:00

The seizures came back. Though we were lucky enough to experience some seizure free days not long ago, they've gradually been creeping back.
Yesterday me n da honk were in asda, when she had a prolonged seizure lasting about 20 minutes. I just held her, and missed the fact that even a shopping trip isn't normal. She had a few more spasms yesterday evening too, so when the evil seizure monster reared it's ugly head this morning , I decided it was no longer a glitch- we needed to up the meds.
Hope has managed on 4.5 ml of vigabatrin twice daily for weeks now, but we had the go ahead to give as much as 6mls. This morning I gave her 5mls. And don't I know it. She's slept all day. Waking (just about) for feeds. I miss her on days like this. I miss her sparkly blue eyes and loud shouts and funny laughs. I hope she's more herself tomorrow. Today
I am reminded of how powerful these meds are. Just an extra half a ml can have such an effect.

We've been back to Borders closing down sale. I scoured the shelves for more special needs parenting books. I found another 2. My collection is expanding. They do help though.
Nearly finished blue sky July. A beautiful book!

After that, I really really need to get back to uni books. I've really slacked recently. So whilst my fellow students are enjoying a summer break, i'll be playing catch up. But I need to do it. I want to. I'm enjoying the course- inclusion. Gives me a different perspective on things. I'm sure it'll come in handy in the future. Perhaps if I decide I want H to go to a mainstream school?
Xxx

Not much to report

2009-08-01T12:00:00.001-07:00

We're back home from our jollies.
Hope ate banana today- loved it of course. No idea how I'll ever get her onto 3 meals a day. 2 fit in nicely, but the day doesn't seem long enough for 3 meals yet.
I think the seizures are creeping back up. I haven't been counting because we've been away, but will keep a closer eye, and if need be call her neurologist about upping the dose of vigabatrin.

I have continued reading blue sky July, and now feel greatful that Hope is infact much less disabled than lil joe- though some of her (the mother) thoughts and feelings and experiences are similar to mine.

I noticed today how well Hope's body responds to her massage. Just simple things; the way her toes curl as I rub her soles, the way she seems to now help me....seemingly pushing into the strokes. We were lucky enough to recieve a course of baby massage at home by a nursery nurse. I was keen because I knew the benefits, especially for special needs babies. We did it religiously, daily for the first few months, but now only 3-4 times a week. I must try and get it back into our daily routine!
Her legs are getting so chubby now, I cannot even fit one hand around the top of her thigh, yet she used to be sooooooo skinny! Bones with covering really.

That's all- v quick update. We're all snuggled up on sofa watching harry potter. I think the tapping from my iPhone may be slightly annoying everyone xxx

Blue sky July

2009-07-30T10:43:00.003-07:00

I'm on the beach at perrenporth. The sky is blue, the sun is shining, and behind our windbreakers, it's beautiful and warm.

Jordan and max are running back and forth from the water to fill the moat on one of daddy's samdcastles (yep, big kid-he can't ever resist).
Hope has the cutest lil towelling sun outfit on, but is all snuggled up under her pink blanket in her pink pram.

Toby is reading his newspaper, Faith (4 weeks older than Hope) is crawling around effortlessly and Tracey has temporarily disappeared

I was reading.' Blue sky July'. A recommended read by amazon when the other book you have purchased is called 'loving and caring for your special needs baby'. A bit of light reading for the beach. I've read to page 24, and feel as if i could have written it myself.
Did she marry my husband?
What is it with those perfect apgar scores?
Are we given those first norMal weeks so we can be physically stronger to cope with what lies ahead? Or as a taster of how things could have been?
Why is it doctors don't listen when a mum knows something is so wrong?
Is there ever a nice way for doctors to say your baby probably won't walk? Nor Talk?

I just needed to put the book down for a few minutes. Don't wanna sit on beach crying. But I'm not crying about Hope. My story. But Is this what everyone else sees/feels when they read Hope's blog and updates? They message me to say they read through the tears. Or that it made them cry out loud. That they have a lump in their throat.
So why am I not crying? I don't know. . . I do cry, only occassionally, and mainly I cry for Sam. The lil boy I miss everyday. And always will. But Hope's life to me isn't sad. She has a good life. We love her. She makes us happy. Perhaps there's something wrong with me?

I'll go back to my book in a minute. Actually probably later; I'll go watch the kids who now have a bodyboard-lol.
But when I do pick up my book. I feel as though I might be more than passively reading. Rather; looking in a crystal ball.

Cor, it's warming up here. The sun has got his hat on :0) I'm off to enjoy my family. Catch you soon
Xxx
Ps will attach photos to this post when
home.

Blue sky July z

2009-07-30T10:43:00.001-07:00

6 months old today!

2009-07-28T14:49:00.001-07:00

I can't believe my lil plonkey is half a year already! This time 6 months ago, H was in SCBU and I was feeling rather
sore. Right now, we are all packed into our too small Honda civic on our way to Cornwall for a few days.

It's been a roller-coaster! Apart from the dodgy start that landed her in special care, all seemed well for the first probably 10 weeks? Then she kinda spaced out on us and stopped doing things she used to; smiling, looking etc, then came the nasty seizures, the diagnosis of severe epilepsy, the meds that are now as much a part of our routine as nappy changes, the counting of seizures, the return of smiles, the light that is seizure free days (some days). With all this, there have been too many appointments to even have a guess at, tons of reports and opinions and a couple of ambulances.

Today we had a couple more appointments come in the post. These ones i'd been waiting for; physio and koalas. I felt kinda choked this morning when they finally came; sad that I've wanted these appointments. Noone wants their child to have to have physio, nor belong to a special needs playgroup (koalas), but my acceptance of Hope's conditions and needs have led me to persue these options and ask for referrals. I know hope is delayed and is therefore entitled to physio, and I know that koalas will be good for both of us. I'm really looking forward to meeting some other mums with special needs children.

When sammy died, I felt compelled to seek out others who knew my pain, and through SANDS (stillbirth and neonatal death society) I have made some fabulous friends. Those people will remain my friends forever, but now I find myself looking for a new group of people; those who understand what it's like to be raising a child for whom the future is so ....?

So how's Hope doing now? Well, I am so chuft that the seizures are being kept at bay. About every other day is completely seiZure free, and on the other days she tends to have less than ten of which are mainly so mild they are barely noticable.
She finally seems to be sleeping a bit better at night now she's in her big girl cot. She's taken to solids really well, today she had breakfast of yogurt and fruit, then a big serving of sweet potato for dinner.

Developmentally? In the beggining I was obsessed; constantly comparing her
Progress with the 'norm', to start with, she was where she should have been, up till about 8 weeks, then we gradually said goodbye to more and more of the normal milestones. She smiles, she laughs, she looks at things-sometimes. Her head is still a bit wobbly. But her control is improving. She is aware of her hands- I think, though she isn't reaching for things on a regular enough basis to say it's anything more than luck/excitement. She makes so many noises and really shouts sometimes. I do believe she will speak! I swear she says 'mum' a lot when she's having a moan! Even auntie Mary heArd her say it yesterday.

But omg, she's sooooo beautiful, super cute, has a lil personality, makes us all so happy and proud to call her our own. Now that the seizures are better under control, she's definitely coming on more, obviously she's way behind, but hopefully we're back on the road to progress further. Obviously we hope she continues to make progress, But really, so long as she keeps smiling, That's enough for me.

We went tenpin bowling earlier. There's not much more to say really. Chris won, As always. Jordan came 2nd, as she always does, max came third, and I came last- as I always do. My sacrafice as max's mum to let him not be last-lol . But in all honestly, I do find the whole experience boring and pointless (apart from the fact the others enjoy it).

Excuse the messiness of this post, like I said, we r in car. I'm blogging from iPhone, but couldn't not blog on such a day as her half birthday

To those who follow, and who's blogs I follow, I will b following your blogs, but for some reason can't post comments on phone :0$

Wooo hoo, Cornwall here we come. 3 hours down, 1 more to go!

Sammy send us some sunshine :0) mummy's bought a present for your garden already

Xxx

Sweet potato! :OP

2009-07-27T12:59:00.000-07:00

Hope has been doing so well with her dinners of baby rice, so today I gave her baby rice for breakfast and made her some sweet potato for dinner. She ate it right up! To think I was so worried she wouldn't be able to eat easily. I feel so lucky that she's doing so well :O)

She doesn't open her mouth when she sees the spoon coming- largely because she can't really see the spoon! But as soon as she feels the spoon at her mouth she opens up. The top picture is from today. She doesn't even get in too much of a mess.

The second picture is from Saturday. Jordan and Max just love her so much. I know they are just over whelmed with the love they feel for her. She is so lucky to have them. They do know that Hope is extra 'special', but I think they just love her more for that.

Well, I called another ambulance on Saturday night. Actually, I suppose it was Sunday morning. Just before 3am, Hope woke and had a few seizures. The seizures weren't any different to the usual mild ones, but she never has them at this time, but then afterwards, she seemed like she couldn't breath properly. I hesitated, hoping that she'd be ok, then dialled 999 because I just didn't know what else to do (Chris wasn't here- but that's another story).

The lady on the phone stayed talking to me whilst I waited for the ambulance. She could tell Hope was distressed and struggling, so had me lay her on the floor and check her airways, then tilt her head to open her airways. The ambulance seemed to take ages, but during this time, Hope seemed to recover. After what seemed like a long time, but was only about 8 minutes, a 'first response' vehicle arrived (All the ambulances were out picking up drunk people-charming).

He was happy with Hope's stats and state, but said we could take her in if I wanted to. But she seemed ok so I stayed at home with her. Really scary stuff though :O( I had never had to call an ambulance for any of my kids in their lifes (touch wood), and now I've had to call 2 within a week :O( Hopefully that will be it for a very long time.

Xxx

Tin foil and rainbows (vision therapy)

2009-07-25T13:22:00.000-07:00

Yesterday we had a vistor from a lady from the visual impairment team. Funnily enough, our paths had crossed before; I supported a lad in my job as a special needs teaching assistant who was visually impaired (among other dificulties), and this lady advises us (as a school) how we can best meet his needs. I also went on a course ran by this lady a couple of years ago.

Anyway, she was really nice, and to me, most of the stuff she suggested was obvious; black and white, bright things, lights, different sounds, different materials etc. Then we all went under this HUGE piece of shiny tin foil/emergency blanket thing. She shined a torch in different places. I watched as Hope's attention was drawn towards these reflections of light on the shiny thing. BINGO!

So the kind lady left it for us. And we've been hanging out, shining lights for Hope under the shiny thing. It gets sooooooo hot under there after a few minutes, but Jordan-Amy likes going under there with H too. H throughly loves the experience. She likes the lights and the sound of the material.

Sadly our Borders book shop is closing down :O( On the plus side, I bagged some great bargains!

My biggest bargain being 'Rainbow in my room' which was £29.99 down to £1. Now, I really don't think it's worth the original price, but for a quid, well, it's fantastic. It is what it says on the box..just a piece of plastic that projects a beautiful rainbow. It looks really pretty on the ceiling, but this is no good for Hope cause I know she can't see it there. So we project it onto her bumper on the side of her cot, or even better, go under the shiny thing with it!

Yesterday was seizure free again. And today (touch wood) she's only had 2 spasms. She's still on 4.5mg of vigabatrin twice daily, so I'm pleased I haven't had to up the dose yet.

She's loving her food! Still on the boring ol' baby rice but she just eats it right up. Today she had 3 portions (3tsps baby rice+30 tsps milk). She would have eaten more too, but I want to increase gradually the amount she has otherwise she may just get really full and then sick it all up. Tomorrow, I'm going to make her some sweet potato.

must go, Hope is calling. She's being a very demanding princess today

Thanks for reading

Xxx

Solids! :O)

2009-07-22T14:05:00.000-07:00

Hope is just 1 week short of being 6 months. I've managed to resist the temptation to start solids till now. It's hard to imagine that Jordan and Max started at 3 months, but that was what was recommended at the time. I suppose in the back of my mind, i've known that solids could present us with another issue. It's fairly common for special needs babies, especially those with similar issues with H, to have issues swallowing.

The original plan was to wait till she was exactly 6 months, but with the holidays coming up, and us planning on getting away next week, it may have been a tricky time to start her. So after a chat with my lovely friend Jess, who also happens to be a health visitor, I felt ready, and excited about weaning. For the past week or so, I'd been letting Honk try a few things from my finger-sweet things. She seemed to enjoy these.

So this evening, I made up one spoonful of baby rice with 10 spoonfuls of milk (as recommended on packet). It seemed to go quite thick, and I briefly considered adding more milk to make it runnier, but then just decided to give it a go. The words duck and water spring to mind! She was fantastic at it; smacking her lips, swallowing, wanting more. I fully expected her to just take a couple of mouthfuls and spit most of it out, but most of it stayed in her mouth and was swallowed effortlessly :O)

She cried when it was all gone, so I made up a bit more for her, which was also devoured!

My clever lil Honkey! Another bridge crossed! (I'll try and put the next bridge to the back of my mind-lumps are another issue all together).

I'm looking forward to getting her on all sorts of yummy things, but am planning on sticking to the rice for a week or so.

Jordan's memories

2009-07-22T11:02:00.001-07:00

Since we're all in isolation because of the swine flu, we've been doing lots of over due tidying and sorting.

I had the kids sort through all of this year's school stuff they bought home on Friday. A lot of it will be for the recyling now, but we've chosen a few bits to put up on the kitchen wall, and l'll keep all their books.

I looked through their books with them.
I came across this in Jordan-amy's R.E book:

Remember our memories
_____________________

My memory is my baby brother Sam. I remember when my Uncle and my 2 Nannies slept over because my Mum and
Dad were in London at the hospital. Early in the morning on Christmas Day, we went to London to see Sam. When we got there it was bad news; Sam had died. I held him. That was the most I could do.

Isn't that sad? :0(
My poor kids. I wonder how this will effect them long term. Then the effect of having a special needs sister. They seem well adjusted and happy. I hope they always will be.

I said to Jordan I thought what she wrote about Sam was lovely. She said ' you know mum, I always say I have 2 brothers and 1 sister'.
'That's great Doll, you do' I said. But I'm so proud of her for that, cause I know myself that it would often be easier to say I had just 3 kids, without going into having
4 but only 3 with me. But that's my girl! She's such a strong person. I admire her, and just know she's gonna grow into a wonderful adult.

As for the swine flu.... Well, everyone here seems just fine. Max has been a little lethargic again, but as I type, Jordan and max are playing tennis on the wii.

I was contemplating stopping the tamiflu, and thinking that maybe they didn't have it afterall. But after speaking to a few other people, who have said their kids were back to their usual mischievous selves when on tamiflu, I will continue. I was also concerned that the meds may somehow affect their immunity to it if they are taking it if they don't have it, but after speaking to my lovely friend Jess (for over an hour an a half-lol. Hello jess:0). )she said it would actually give them some protection against it.

Hope slept from midnight till half 6 in her own bed again! She woke for a feed at half 6 and half 8, then we woke at 10am! The best sleep I have had in months. Possibly years!

After the big episode the other day I thought maybe she'd outgrown the meds already. But the day after (monday)she was seizure free again, then yesterday she only had 10 over 2 clusters, but what I did notice Is that one of the clusters (6)was really different. They were the kind described as 'salem salutes' where she lurched forward, as opposed to her usual 'myoclonic jerks'.

Today, she's only had 2 teensy/barely noticable myoclonic jerks. Touch wood!

Swine flu update: the calm before the storm?

2009-07-21T13:01:00.001-07:00

I'll keep this brief cause not feeling too fantastic myself ....
Jordan and max not as bad as I expected-touch wood! Chris sent home from work because kids have it, so that's a bonus!
Hope not herself; really sleepy, not feeding much and being a bit sicky :0(

She slept really well in her bed last night. I loved it too, being face to face with her beautifulness

Love to you all xxx (non contageous kisses)

A big girl bed, and SWINE FLU!

2009-07-20T15:46:00.000-07:00

As you can see, Hope's moses basket was getting a bit cramped. She certainly got her moneys worth out of it! So Mummy and Jordan decided it was time to build Hope's new bed today. Then Hope decided that actually she'd rather feed, so clever ol' Jordan (aged 9) built it!

Hope looks lost in, but it's beautful. We have pink giraffe bedding, and now she has room for her special toys too. But the best thing...it's a 'closer to you' so it's RIGHT next to my bed!

AND NOW FOR THE BAD NEWS! VERY BAD!

jORDAN AND MAX NOW HAVE SWINE FLU! Max has been poorly all day. This evening I had a call to say one of his classmates have been diagnosed. Max seemed to go downhill fast, so I called the doctors who went through his symptoms and then confirmed my fears. Just a couple of hours later, Jordan starting showing symptoms.

I have been SOOOOOO scared about this. It's been getting closer and closer for a couple of weeks, and I've been so worried. Worried for all of us, but especially my teensy princess.

Touch wood- she's not running a temperature of showing any signs (yet), but this could explain the unexplained seizures from yesterday. Because of Hope's vulnerability, she's being treated with tamiflu as a preventative. Though, as the nurse advised, it's probably too late for her to get off without catching it, but hopefully if it's caught early it will be less severe. :O(

I have a feeling it's gonna be a rough few days :O(

My poorly babies :O( I just want them all to be ok :O(

Chris is out now picking up the scrips (6 minutes paspt midnight)

Xxx

Evil seizure monster returns with avengence, 999 call, and ambulance trip to the hospital

2009-07-20T15:18:00.000-07:00

Definitely spoke to soon! The evil seizure monster was obviously was just resting whilst getting more powerful. Yesterday morning, Hope had the mother of all seizures. Different to the other spasms we've become used to. The day before we'd had our first seizure free, but previously we were down to less than 10, of which were so mild, to the untrained eye they'd be unoticable.

But yesterday morning whilst having a massage, Hope's arms shot out powerfully and Hope screamed. Then again, and again...Usually her 'clusters' would come 10-20, 30 at the very worst back before we began medicating..But these weren't stopping. And Hope was distressed. She usually isn't bothered by them.

After about 15 minutes of non-stop spasms, I called the children's unit. They told me to call for an ambulance. So, Blue lights flashing, sirens blaring, an ambulance picked up my lil princess Plonkey. By the time they'd arrived, the seizure has passed, but they took her in anyway.

She was checked over; they were trying to find a reason for such a severe episode after being almost seizure free; infection, fever etc. Nothing could be determined, so Hope was kept in for the day under observation. In the evening, after not having anymore seizures during her stay, she was discharged. Phew!

A seizure free day! Miracle or coincidence?

2009-07-18T16:02:00.001-07:00

Well, I've waited till midnight to announce This great news. I didn't want to tempt fate by saying it earlier, but yes, Hope has not had a seizure all day.
So has the power of prayer had an effect? Or was it going to happen today anyway. I mean, we were nearly there, the day before she only had 6.
Well, I think it's nicer to go for the miracle :0)
Time will tell.
So thank you God, Jesus and Ruth!

Goodnight, God bless :0)

Xxx

Beautiful friends and a kind stranger

2009-07-18T11:33:00.000-07:00

WARNING: This is probably gonna be a long one.

Firstly, doesn't Hope look soooooo cute in her lil baby Dior outfit? It was a gift from her SANDS Auntie Kelly, Uncle Paul, G, Angel Bradley and Aaron. I think she looks absolutely adorable!

Yesterday, Hope recieved a beautiful wooden toy in the post from another of her SANDS aunties; Rachel. She has an angel Joshua and also a son called James who has special needs. Rachel has been honest and truthful with me about the experience of bringing up a special needs child, and that I appreciate. It's also great to know that I could say things to her that might shock other people, but she'd understand. Sadly Rachel and her husband and son couldn't make the christening because young James was poorly and had been in contact with the dreaded swine flu!

In the parcel was an inspirational newspaper clipping (she likes sending me these, and I like recieving them) about a special needs child. And also a beautiful card, but inside were some beautiful quotes.

Here are a few of my favourites:

"If it were not HOPE, the heart would break" Thomas Fuller

"The supreme happiness of life is the conviction that we are loved" Victor Hugo

"HOPE is the thing with feathers,

that perches in the soul,

And sings without words,

And never stops at all" Emily Dickenson

And my favourite......

"Once you choose HOPE, anything is possible" Christopher Reeve

Now what a beautiful person that is, that takes the time to find those and write them!

And then, just now, another one of Hope's SANDS aunties; Hayley, messaged me to say she'd made a header for Hope's blog. I'm so chuft, she did this new background an' all. It's perfect and just so thoughtful and kind. Hayley and I have never met, but we have a special connection; she has an angel called Nathan, and now she's expecting again...Her lil baby is nicknamed sunshine, coincidently, my angel Sam, is nicknamed sunshine. A very sad coincidence though, it that Hayley's Sunshine, has the same condition my Sunshine did- CDH. I hope with all my heart she gets to keep this special lil man! Hayley my love, I am here for you, squeezing your hand very tightly,every step of the way!

What do all the above people all have in common? Well, they all had angel babies, but goegraphically, we are spread all across the UK, yet I count them all as very special friends. I met them all through the internet- on SANDS forum. Isn't the internet a wonderful thing. Of course, I wish none of us ever needed to be members on SANDS which is of course, undoubtably the saddest forum on the internet, but I am pleased to count these people as my friends!

And now for the stranger.....

We took Jordan and Max swimming this morning. I sat with Hope in the spectator area. A lady sat next to us. Like most people do when there's a cute baby about, she was drawn and started looking at Hope and talking to me..the usual...'how cute'...'how old?' then 'Can she see?'.

'No' I replied.

Then Chris came along and told me I was sat in the wrong area, so I said goodbye to the stranger.

Walking away, I felt winded. Gutted. Upset that it was that obvious that my baby wasn't normal.

You seee, I know Hope is special, and I'm not at all embarassed about that, but to me, she is a baby first and foremost, the disability comes second. And I don't tend to highlight it to people who don't know her. I just prefer to enjoy the compliments anout how cute and pretty she is. There's no need for them to feel sorry for us, so I don't bother telling them of her difficulties. There's no need. No point. So I was sad, that it was so obvious that Hope wasn't 'normal' already (I say already, cause I knew the day would come).

Anyway, after swimming, we were waiting for Jordan and Max to come out of the changing rooms, and this stranger appeared. She'd come to find us. She said something like 'I hope you don't find this strange, but I believe that Jesus wants to heal this baby. Can I pray for her?'

Now, obviously this isn't something that happens everyday, but I sensed this lady was kind, and thought we had nothing to lose. So she placed her hand on Hope and prayed for healing.

I, of course Hope it works!

I said to the lady that I wish I had such a strong faith, then explained how the faith that I used to have has taken a real rocking these past few years.

She understood. Only time will tell I guess. But even so, she was a lovely lady. I gave her the blog address so she can keep check on Hope. She was a lovely person. So if you are reading...Thank you Ruth!

So today I feel happy. Happy that the world is full of such beautiful people!

School's out!

2009-07-17T13:18:00.000-07:00

Hurrah! It's the summer holidays. No more early mornings, no more uniforms, lunchboxes, homework etc. And we get to be TOGETHER! 6 lovely weeks of it :O)

Today our lovely health visitor came for the very last time. We have been blessed to have this lady for the past 5 and a half months. She's been so supportive through everything we've been through; she's encouraged us to continue breastfeeding when Hope's weight has been so low it's been off the charts, and when giving a bottle at points seemed the easier option, she's come round to weigh Hope and measure her head circumference weekly, then fortnightly, she's made tons of phone calls on our behalf, and listened to my concerns. And what's more important, is all this has been done at home. Anyone else reading this who has a special needs child will understand why I hate baby clinic, and why it is difficult to be around 'normal' babies.

Hope is perfect to me, and when we are at home, I don't see her as anything other than her cute lil self who I wouldn't change for the world. But it's undeniably hard seeing other babies, the same age doing the normal stuff that everyone just takes for granted. I hate it when people look at her and ask how old she is, expecting me to say she's a few weeks old, when actually she's nearly 6 months old, yet size wise and developmentally she's nowhere near.

But our health visitor understood this was an issue, and despite my offers to attend the dreaded clinic, always came to us.

The last few times she had seen Hope, Hope wasn't herself at all. She was an empty shell almost, the seizures taking over her lil personality and regressing her back to a newborn state.

Hope had been fab all morning; full of laughs and smiles. So I was willing her to stay awake so that the health visitor could see how much better she was now we were controlling the seizures.

Hope wasn't at her most cheery, but the health visitor was impressed with her progress, and couldn't believe how much H had grown up since she last saw her (a fortnight ago), and commented on her improved head control.

She also thought Hope was looking chubby. Something I don't think she or I ever imagined. Hope's weight has been an issue ever since she arrived; weighing in at a boney 4lbs 14oz at 37 weeks gestation, then dropping to 4lbs 8oz and taking over a month to even regain her birth weight. For 5 whole months we've been trying to get Hope's weight, not within the normal range, but ONTO the chart. She's always been below the 0.4th centile. Until a couple of weeks ago that is, when to our amazement Hope made it onto the 0.4th line. Well today, the lil chubber monster weighs 12lbs 4oz (that's 5.5 kg), admitedly that's not huge for a nearly 6 month old baby, but she's actually made it to the 2nd percentile line! :O)

Hope bought a gift for the lovely health visitor, and we wrote her a card. I put the blog address in so she can keep up to date on her. So if you are reading ...Hello, and thank you again...For everything!

Auntie Mary came round too today, with some naughty but nice cakes. She was also surprised at hpw alert and happy Hope was.

I feel like although Hope is way behind, we are back on the track again, and can start building again. At 8 weeks, Hope was acting like an 8 week old baby, but then something happened, and she wasn't. She wasn't even turning her head to sound, nevermind smiling, and rolling. Then the nasty seizure monster showed up and our days were spend counting seizures and worrying, then once she was diagnosed, we started the meds which knocked her out so much, but now, she's tolerating the meds, and probably almost back to where we were before it all starting going wrong. So hopefully, we can continue to progress from here. But for me, the one thing I wished for, was that Hope could smile; to show me she's happy, and that she knows she is loved. Her smile melts my heart, and makes me a very happy proud Mummy.

RIP Sam Barnes

2009-07-16T15:19:00.001-07:00

Ok, so this is gonna be not so much about Hope, but it's dominated my thoughts today....
When my Sam died, I joined a forum called SANDS (still birth and neonatal death society). I gained so much comfort knowing I wasn't alone, being able to talk to people who REALLY understood. One of the ladies who helped me in the early pain filled days and long nights was a lady called sam. She'd lost a lil boy called Alex in 04. She had older sons too. She Was a lovely kindhearted lady who was 'there' for so many people.
In June this year, Sam was blessed with another son, Shay. This morning, through
Facebook and sands, I discover that Sam has died. Her own son has logged onto facebook and changed her status to tell us all that his mum sadly passed away yesterday.

So today I am struggling to understand how something so sad can happen. No mother should have to bury their baby. I know that is a pain that never goes away, just one you learn to live with. So for Sam to be blessed with another baby boy, then herself be snatched away from him, leaving behind other children and a husband seems the cruelest twist of fate possible. I am baffled as to how a god could let so much tragedy happen to one family.

If you pray, then please pray for the Barnes family.

Sam, you will be missed by so many. May you and your beautiful Angel Alex have the sweetest of cuddles tonight. Please kiss and cuddle my Sammy for me, and look after all those special angel babies.

Hope and I did have quite a good morning. We had some time on the activity mat, then some bumbo time playing with her new toy from Jess and family. She did hit it a few times, but I am hard to please; she'll have to do it a few more times before I put it down to anything more than luck combined with excitement.
After we heard about Sam, I've been pretty miserable and this has had an effect on Hope who has also been miserable. We've mainly spent rest of the day cuddling and feeding on the sofa. She got in a grump earlier and despite lack of teeth, bit me really hard- Ouch! I dread teeth.
On the seizure front: just 3 barely noticable this morning, then 7 mild tonight at ten pm. I am noticing that these are happening before her meds, which probably means it's because the meds are wearing off. She's currently on 4.5ml twice daily of vigabatrin (which are 250mg sachets diluted in 10ml).

Night all
Rip sam
Xxx

Almost a seizure free day

2009-07-15T14:39:00.001-07:00

As the title says! I have been touching wood all day hoping that it would last. We got so close. It was 9pm before the seizures struck. There were 15. All pretty mild, but nevertheless seizures. Still, I am a happy mummy. Happy because I can see the meds are working. Happy because I believe we may have seizure free days sometime in the near future- hopefully!

Hope went to her first sports day today. She shared herself out, taking it in turns to watch her big sister and big big brother. Jordan came first in the beanbag on head race, and max came first in the hockey race and second in the running race.

We had a lovely evening tonight. It was Jordan and max's school performance of Bugsy Malone. I'm sure hope enjoyed it too! Though she couldn't see what was going on, it was really loud, great singing, and a great atmosphere which I'm sure she picked up on.

On a less positive note, Jordan and Max bought home a letter from school today. Printed on red paper. There are cases of swine flu! It seems to be everywhere. I am worried. Worried for all of us. But especially the impact this might have on my littlest princess. Part of me would rather we all just got it done and over so I can stop fearing it, and whilst the strain is weaker.

Hope has been sleeping a bit better since the weekend. At Trisha's she slept 6 hours each night, same on Monday, then 4 hours last night. I have felt like a new woman! And tonight I sleep on my brand new memory foam matress. I swear my back is completely done in from sitting up in bed at night feeding the honk hour after hour, so I'm really hoping this new mattress will improve the situation.

Night all xxx