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)

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.