Happy Purple Day !! (International epilepsy awareness day)

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

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

Xxx

Even more good news - The Ruth Griffith's assessment

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

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

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

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

So now I'm extra proud :0)

Xxx

Hope and Max video

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

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

'special' shoes

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

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

Bear with me

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

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

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

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

Xxx

More good news

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

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

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

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

<3 Cardiology <3

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

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

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

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

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

On cloud 9 for a change :0)

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

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

Xxx