Home at last

Hi all well we are home at last, Meg is suffering terribly from Jet Lag and has been awake from 12.30 & 1 am the last 2 mornings and then refuses to go back to sleep, so even though the rest of us seem able to sleep at night we are kept up caring for Meg.
I am sure it will all blow over in a week or so - we hope - fingers xxx!

Even with the incessant tiredness we are still noticing changes in Meg, the earlier small changes have continued to develop - on the way home in the plane I was reading her a story that involves pushing a button to make a noise, Meg loves this story and has done ever since she was 6 months old but she has never ever made any attempt at pushing the button herself before, we of course would help her to do it but she had never initiated it before. Well not only did she initiate the button push but she made her finger point to do so and kept it pointing throughout the entire story, she was not quite able to land on the target with the button but the fact that she tried and was obviously wanting to try was amazing, let alone making her finger point.

Her responses to questions are now much clearer and quicker and in some ways she seems to have matured a little, this may sound like an odd statement for a 2 yo but - Jason and I were both commenting on this the other day, she just seems to understand better and more complex concepts, questions etc, its a little hard to explain but it is something we had both noticed.

Her eating and drinking has improved dramatically, we were already on an upward trend with regards to this but I think the stem cells have certainly assisted.

She is making more noises, that are more complex and she makes them more often.

She is also getting very close to commando crawling on her tummy! Because we have been travelling we have not been able to give her much tummy time, but we have noticed a really big change in her - as much as she lets us know she is not happy about it her tummy time antics have really come on and she does manage to get herself from one side of the mat to the other these days without toppling over on to her back - which is what she would ALWAYS do prior to the SC treatment.

So all great progress, we are really looking forward to getting into some serious therapy with her next week once we have settled back into a routine and all had some sleep.
It has been quite frustrating not being able to devote the time to doing Meg's physio and daily program while we have been travelling as I can see she is really itching to make progress.

Last night when we were getting dressed in her Jarmies, one of our routines it for Meg to push up through her legs so I can pull up her pants - essentially making a bridge between her legs and shoulders, she has always enjoyed doing this but has struggled to get very high, the key is to ask her to do the exercise and let her initiate the movement then if she struggles I would assist. Well last night when I asked her to push through her legs she immediately (usually there would be quite a pause before the movement started) pushed herself up so high that I did not have to asset her or hold her bum up while I pulled up her pants, she was so pleased with her self, she even repeated the show when I called Big brother Tom to come and have a look at what she was doing.

Meg also continues to have some episodes where she will stare into my face, and look at me intently, as per my last post this is such a lovely change in her as it is very hard to connect to a person without eye contact and it has brought a new closeness to our relationship.

We begin back at CPEC next week and I am looking forward to seeing if any of the therapists notice any changes in Meg, It is a shame that we have all new therapists this year as some of them have only met Meg 3 - 4 times so far. Lynn carter the senior physio there has spent allot of time with Meg though so I hope she might spend some time with us over the next few weeks and give me her opinion.

I am afraid I am still plagued with the idea that the changes that we see are only because we so desperately want to see some change after the huge effort we have gone through to get Meg this treatment. It is certainly something that many of Meg's Drs have said to us with regards to anecdotal evidence from other parents and why this should not be used to base decisions on.
It would be nice to have some independent assessment of these changes to verify what we are seeing.

A note - I would like to put out there to all those who have questioned our decision to attempt this treatment, including many of our Drs who had suggested that the cost of treatment was exorbitant for the minimal likely change we might see.
These changes are not what I would call significant, they are small changes that at this stage make no improvement in Meg's level of disability, it is what these changes mean to Meg that is the important thing, She may remain a level 4 spastic quadriplegic cerebral palsy even after the treatment, but now she could be a level 4 spastic quadriplegic cerebral palsy who can point a finger and use a touch screen computer to communicate! These are the changes we were hoping to see, any small change that will help to improve Meg's quality of life living with a severe disability is worth any amount of money in my books.

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