Thursday, 17 December 2009

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

Wednesday, 16 December 2009

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)

Friday, 4 December 2009

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

Wednesday, 2 December 2009

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

Will try to update on all the appointments sometime this week