The ECHO took place in a brand new part of the hospital and was cool and air conditioned. The opthamology review took place in the old hospital and WAS NOT cool and air conditioned. It was so hot and claustrophobic, it was the closest my imagination could come to conjuring images of hell. Migraine!!
**Note: Miya's ECHO was normal and (insert trumpet fanfare) her corneas are only lightly clouded. Her iris colour can be seen through the light, and her eyes are hazel!!
On a different, non hospital related note, I must mention that Miya has become somwhat of a celebrity in the town where Chris is from. Because the trips to London have taken their toll on this family financially (even though we have received some financial assistance from Army charities) we have not been able to take Miya on a proper holiday. Small trips are even a struggle sometimes. Chris's step-mum decided that she would like to organise a local fund raiser to help us take Miya on a short break here in the UK (Centre Parcs or similar). The support has been mind boggling. We were contacted by the local newspaper who ran a story on as (not entirely accurate, though, might I add). We were also contacted by a husband and wife who do charity runs and were interested in running for Miya's benefit. Whatever money is raised, we are going to go on a holiday and if any is left over, we're going to put it aside for any medical equipment Miya might need that is not covered by the NHS (such as an uber-cool pink and black wheelchair, if and when the time comes).The onslaught of warm weather means that our back garden has suddenly become home to a paddling pool. Despite the hosepipe ban, we have been permitted by our water company to fill the pool with buckets. About 40 of them. And it's not even full. Miya has had a blast in it but putting sun cream on her remaining hairy body parts is a NIGHTMARE!!
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| She's got a hairy back!! |
Miya has started speaking in short sentences which usually revolve around cats, shoes, and doors. She has also started saying "Daddy" as opposed to "Dada". She has starting whining and having small tantrums (typical of a nearly two year old). She makes me laugh and she makes me shout and sometimes, I feel like I might have a nervous breakdown.
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| She did this to herself |
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| At the cafeteria at Great Ormond Street Hospital |
I was recently contacted by another mum of a Hurler's baby. She reads this blog!!! I was amazed that someone other than my father reads this blog!!! We're meeting up on Tuesday!! I love meeting other MPS families because they know what I'm talking about when I mention "enzymes" and "GAGs". They don't think I'm long-winded when I talk about MPS and they understand Miya's unique appearance. (Although a frined of mine told me the other day that Miya's unique look makes her very pretty. Awww shucks!!)
I'm unimaginably tired. Miya is busy, therefore I am busy. There aren't enough hours in the day and by the time Miya goes to bed, I just want to sit and stare out the window and vegetate.
As a family, we are looking forward to the summer time and I am planning on taking Miya to Peppa Pig World for her birthday (Chirs has been notified of this plan. I'm assuming he's coming along too).
