Harrison has had quite a lot of testing lately. Due to his being ADA deficient he had a 50 % chance of developing neurological problems - ie brain damage as the enzyme is not there to make the brain function properly. I thought we were looking like things were clear, however Harrison has developed epilepsy. Now I am not upset by the epilepsy part of things but that this means there is damage.
I cannot help now but worry what this means for his future. Harrison seems blissfully unaware or uncaring even. so that helps us stay focussed on the good things happening. but as always we will keep you all posted!
So we headed back to Westmead and have had in the last two weeks, another MRI, Lumbar Punchure, EEG x 3 and a CT scan. The doctors have found something on the CT and MRI at the back of his head. and so they are now wanting to conduct a bone scan. I hope they find nothing but each time he's had a test lately Harrison has then had to undergo another
. Time will tell. It feels a bit like a blow in the guts though - as we seemed to be cruising along and now this. I guess this will be us for a while.
Harrison is now 9 months old. He is almost sitting, and is up on all fours trying to crawl - but usually manages only a backwards push getting stuck against the lounge, or under the coffee table. I spend a lot of my day "rescuing " him. But we are so happy with this progress. He is 8.7 kg and wearing size 0 so he's feeding well.. Although he's not keen on ANYTHING that is not fruit based or custard or sickly sweet oatmeal. Or lasagne which I have to make specially for him to ensure its dairy free - His bum is smelly enough without adding the dairy intolerance to it!! Lol
Ella is in for her tonsils to come out next week.. They are huge she talks funny all the time now and we cannot afford Harrison to get sick. He is still immune deficient and the bone marrow is taking its sweet time to kick in. In January on the 16th we find out how this is really going.
I am sorry for the lack of pictures, these will be updated and added shortly.
Its getting close to Christmas. For the first time we will not have a santa photo with ALL kids in it .. Lucky for me I am getting good at photo shop!!
But we've done our best to make the house look Christmassie. I met a baby in Singapore called Ella - she's doing well but will be in hospital for the holidays.
Anyway Harrison is going great guns barring a few minor technical difficulties!! He's really developed into this happy kid.. Truly one of ours. And he's by far and away the cheekiest one of the lot. Gawd help me when he's three - cause he already tells me in baby talk what he wants now. & I am sure he's mimicking everything I say - no teeth though so he's still got this really gorgeous gummy grin.
Below is a link to another scid kid. Boy called Logan. He's a little cutie. :)
http://littlelogansblog.blogspot.com/
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