Sunday, 5 December 2010

The stingray (nov 19th)

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)

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.

Monday, 25 October 2010

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


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

Thursday, 7 October 2010

The shuttle . Part 2




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 ...








Monday, 27 September 2010

WHEELS

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

Tuesday, 14 September 2010

runningforhope

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

Friday, 20 August 2010

HAPPY DAY :o)


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

Saturday, 26 June 2010

Brainwave brainache



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...

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.

Friday, 26 March 2010

Happy Purple Day !! (International epilepsy awareness day)



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

Thursday, 25 March 2010

Even more good news - The Ruth Griffith's assessment




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

Wednesday, 24 March 2010

Hope and Max video

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



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



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

Friday, 12 March 2010

More good news




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.

Thursday, 25 February 2010

<3 Cardiology <3


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

Wednesday, 17 February 2010

Hope's birthday party


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 piƱata. And ate lots of jelly!

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

Xxx

Tuesday, 2 February 2010

Happy 1st Birthday my darling baba Honk

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!!!

Wednesday, 27 January 2010

One tomorrow!



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

Thursday, 21 January 2010

21 hour awakeathon

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

Saturday, 16 January 2010

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

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.....?


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...?

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.

Xxx

Saturday, 9 January 2010

Hope's first Xmas (in pictures)

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



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)