The summer holidays. A busy and/or stressful time usually. Ours seemed to fly by...
Holidays
We had a semi disastrous stay at my mam's caravan where Michael attempted to burn it down, and Nate screamed all night most nights.
We managed some lovely days out, particularly to Seahouses, Lindisfarne and Alnwick Gardens. Nate loved the wobbliness of the rope bridges and cobbles. Thea always panics slightly at the causeway to Lindisfarne, which always amuses me.
Decorating
Nate had his first sleep over in Thea's room. His bedroom was being decorated by Michael's twitter friend @buxtongooner (who is now an actual real life friend). Hurrah for twitter! Luckily Nate was having another trial off BIPAP. Not sure where we would have put the ventilator!
The new room.
Treatment
Botox isn't just for the rich and famous. It can have amazing results in people with various levels of spasticity. So mid August Nate had Botox in his calves to help release his tight feet and to stop their constant motion which is starting to deform them and prevent his standing. It was quite straight forward really- 3 needles in each of his calf muscles guided by ultrasound while allegedly "sedated" on midazolam ( Nate veered from the norm and became hyper).
Fundraising
As the holidays drew to a close we held a 5 a side football tournament-raising money for sensory equipment for Nate's new room. This was organised in its entirety by Glenn Kent, to whom we are eternally grateful :) A huge amount of money was raised!
The winning team
Thea and Nate returned to school at the beginning of September and Nate had his feet put in casts to stretch them and try to get them in a better position now the Botox had worked.
A week later Michael and Glenn Kent ( yes yes I know I think we may owe him an organ or two) ran in the Great North Run for St Oswalds and Nate.
Watching for daddy
They both did amazingly well. Though Michael is taking his time recovering!
And no before you ask, I haven't had a chance to do any teaching yet. Which is odd as I've had to use my teacher voice on 3 separate occasions this week. To adults.
Already my availability for work has been scuppered by Nate being booked in for an upper GI endoscopy next week. Hopefully it helps give us some useful information and it's worth him having the GA. It scares me silly the thought of another GA, and somehow this procedure is classed as "elective". Unsure how we have a choice in the matter when we are desperate to help him identify the source of his pain and help him!
So this is what happens when I don't blog for a while. You get inundated with photos. It's like sitting through a relatives holiday snaps on a Saturday afternoon. Sorry.
However it's probably still preferable to me waffling on!
Lovely to get an update, and lots of gorgeous photos :)
ReplyDeletehi,i wrote to you asking if you know or heard of diease Alpha Thalassaemia mental redation(ATRX),Iam mother of 2 boys with GDD And Few days aga we got the diagnosis with ATRX have;( in addition to the older son of the child has ,gastroesphageal,Myopic astygmatism,Dystonia,constipation,malrotation,microcephaly the last 3 months is breathing rapidly hiperventylacja,as is 8 old he can self,drinking,it,toiet says he wants,uses few words like yes,no,give me let me,but understanding the comand does not respond ,he have chromosomal duplication 7q21.3 to q22.1 detected in dna analysis,all the time stomach problem ,openning bowel,he had surgery for undescoped testile;(he had endoscopy gullet ulceration ;(we are worry what to expect in the future and we would like to find whateever disease,please answear if you now or your child have the same problems;)
ReplyDeleteHi there, yes my son has a few of those issues too with his ATRX. Does your son have the chromosomal duplication as well as atrx? Happy to chat!
DeleteThere is an international facebook ATRX group which I have found really helpful finding out things. I could add you? Rachel x