Pleeeeeaaaaassseee drink up

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

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

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)

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

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

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

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

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!

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!!

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

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

8th October

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!

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

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)

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!

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

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$

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

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

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

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

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!

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(

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(

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

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

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

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

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

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

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(

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

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$

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(

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

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

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

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

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

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

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

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.

6 months old today!

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

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)

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