HAPPY DAY :o)

For one reason or another, a few months have passed since we last saw Hope's lovely consultant Ravi. She's meant to be a 6 weeker to this particular clinic .




If you've read other posts, you'll know this doctor is a very significant person in our lives; he's such a kind doctor, but has given us bad news more times than he or I care for. In some of our bleaker times, he'd call to see how Hope was. He's also given me too much food for thought, and my head and heart wrestle continuously with the whole biopsies - to test or not to test battle. His thinking was along the lines of forewarned is forearmed (possibly, but the findings may not be conclusive still). My train of thought being I couldn't bare to know. Ignorance is bliss. I often lay at night with her wondering how long ...



Hope was on top form today, and Ravi could see she'd grown. He was pleased with how well she was supporting her head now, and she showed off with her babbling. I told her that she's a lil roller now, and he asked if she might show him, and she was pleased to have the opportunity to perform one of her favourite pastimes.



After this, Ravi picked her up and fussed and kissed her as he usually does, and told me how great she's doing.



As usual, I presented him With a host of questions ; my first about checking lactate levels, kidney function etc (these are done routinely for Hope). He said he wouldn't bother this time as it's clear to see how well she is :9)



We discussed her vigabatrin doses and her fleeting seizures. I questioned whether her recent thrush is an indicator of an imbalance , but he thinks not. I asked to be prescribed a rescue remedy med to treat her epilepsy in an emergency, he agreed this was a sensible thing to do now. But since pharmacies won't hand this out, and I need a lesson in it, we'll have another appointment soon to go over this.





He's also prescribed a laxative for her chronic constipation, but after finding out more about 'lactalose', I think it may not be ideal since it works in a way which draws fluid from the body, and requires a good intake of fluids, however, I already have issues keeping her hydrated. We'll see how it goes.





For a change, I bought up the biopsies... I suppose I know eventually
I'll have to agree... Maybe it was time to start the ball rolling... Much to my amazement, he said he really doesn't think there's a need right now. Obviously we know there's something majorly wrong, but things don't seem to be going downhill at the moment. And Ravi spoke of new techniques and tests that are being developed and researched all the time, and that the knowledge is growing rapidly, so in time, conclusions may be reached on the blood and csf in labs.





He said he'd see her in 3 months.



I could have skipped out of there :0D

xxx

Brainwave brainache

Apologies for the lack of updates. It's been busy. I'll try and fill in the gaps sometime.

Well, we are all In the car on our way home. Considering this trip to brainwave has been something I've been looking foreward to for months... I couldn't have got out of there fast enough.

I've heard very good things about the place. But only the good things. I know one of my friends swears by it, and gives a lot of credit to the program for the progress her son's made. BUT what I didn't realise, was how hard it was gonna be! Actually, I do think Claire said it was 'physically and emotionally
Draining', but I think that may have been a slight understatement.

I'll try and put you in the picture; Hope has been stretched and pulled beyond her comfort, she's been made to stand when she can't even hold her own head properly yet. She's cried, screamed and pleaded with me for them to stop. Her big blue eyes haven't shed so many tears. She tasted of tears when I kissed her.

We finished each day with a session in the hydrotherapy pool, which made Hope happy again. The therapists were amazed by Hope's confidence in the water, how she really loves the water, and my ability to support Hope in the water by just using one hand under her neck. They asked if they could record this for their staff training.


Day 1 was spent assessing Hope, and by the end of the day, they'd designed her program. Day 2 was spent going over the program, me trying it, and then recording it.
So we now have our programs; one for the water, and one for home. They are both on laminated sheets and DVD. The home one needs to be done 6 times a week, it should take around half hour, but initially could take an hour.aNd until Hope and I are a more used to it, the whole program requires 2 people to carry it out, We've been provided with a peanut ball and a wedge. I'll try and put the DVD on YouTube very soon.



You can't fault the service there; everyone was really kind and helpful. The accomodation was so nice, it seemed a shame we weren't staying longer. Hope had 3 therapists all to herself for 2 whole days. This meant that the time there completely evolved around Hope. We were able to break for as long as we wanted, whenever Hope needed a rest, a cuddle or a feed.

So now we've just gotta crack on with the program, and wait to see I suppose. Hopefully it'll be worth the cost and the tears. Hopefully I'll be singing it's praises too.

if you are interested have a look at their site http://www.brainwave.org.uk/

Oh my honkey...

Omg- my honkey!

Can't quite believe I'm stood outside the oasis ready for the NCT sale, and Honkey isn't here. She's popped off with Daddy and Dolly to quickly pick Max up from football. This is the first time we have seperated. But it's cold. It made sense for her to be in the warm car. It happened so fast. She'll be back soon.

I've been preparing myself for this day for ages. Seems crazy I know, but in the beginning you don't leave tiny babies, then the seizures started, and through fear I wouldn't even leave her in a room, then I guess it became habit, then perhaps obsessive lol.

A few weeks ago, I took a step in the right direction, by leaving Hope with S (from rainbow trust) whilst I took Jordan and Max swimming. But, S was still at swimming, just watching, so I could see Honkey and check she was ok.

.........….……..............................................................

They came back a few minutes later, and I was relieved, and pledged not to do that again in a hurry. But actually, i think I need to. Chris won a meal out for us both at an Italian restaurant, so I think I can be tempted.

Update: we did go out for the Italian. S looked afer Hope and dolly and Moo. Sadly Nobody in the family knows Hope well enough for me to be able to trust them with her care. But I know Shes in good hands with S, plus dolly and moo like having S look after them.

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