We met with an orthopedic surgeon who specialises in the spine and scoliosis. Now that he has seen Josh, we will return in another month or so, and he can evaluate him in his wheelchair, which arrives soon.
It is difficult to place Josh in a position that supports him in all the right places. I either lie him down on a mat (which has various massage settings) which is on top of a sun lounge, or on the floor, or ocassionally propped up on the lounge (although that is quite difficult). And of course he has his adjustable bed, but he only uses that at night. Laying Josh down is great for his spine because gravity is not pulling it down. If he is seated, but is not supported properly around his hips and ribs for example, it can be damaging. Laying down for long periods however, is not only boring, but is not good for the chest and staving off infections. So, a balance is needed. Joshy's spine is still flexible, which is good news. The goal is to ward off any spinal operations, such as spinal fusion, for as long as possible, preferably until the age of 10. The doctor was clear in saying to continue doing whatever we're doing, and as much as possible, but to not beat ourselves up over positioning, because further curvature of the spine may still occur regardless. That doesn't mean I will become lax and just lay him any old way...
We decided to go ahead with enrolment of Josh at school, and from next week, Josh will start going Monday, Wednesday and Friday. We met with his teacher, and support workers and staff who are all lovely. I feel confident of their experience and ability. Ive already been asked to help at the canteen, and also assist with changing other kids back into their school gear after hydrotherapy...
We requested transport for Josh to take him to and from school, as the hours are 9am to 3pm. Not sure if that application will be accepted, but all my fingers and toes are crossed; with the other kids, its a logistical nightmare!
My heart aches knowing he will in the care of someone other than me or his dad, but I am excited about Josh starting school; the whole time we were there, his eyes were wide open, and he was "looking" more. I get teary-eyed thinking of the possibilities, and am so happy about the opportunities for experiences he will receive.
Ive decided to not have Kayla and Kane return to swimming lessons for a while, although Paris is still squad training, which we went to yesterday for the first time this year. Later, we went to Band Induction, as Kayla will be playing the saxaphone in school band! Yay Kayla!
And today, Josh received botox in to his salivary glands to help manage his secretions. There are 5 or 6 injections just under his jaw on either side, which he received under general anesthetic. We should notice the difference in 2-3 weeks, which should mean minimal suctioning, and possibily reduction of some medication.
This photo is while he was still zonked out in recovery.
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