Well its been a while since I've updated this but this morning I had time because Haydin's been up since 5 am and we have school at 8:30 so yet again were running on 3 hours of sleep. Haydin started the MRDD school and is doing very well socially, he's cooperating with the therapists and is exploring a lot of new foods and toys. They're going to be putting him in a supine stander starting this Tuesday to hopefully get some weight through his hips because it seems that his right one iss going out of socket. His physical therapist at school, Linda, is also worried that Haydin is showing the early signs of scoliosis so were resorting to upper body wraps since his Benik vest isn't very form fitting anymore and were also getting an x-ray done of his back and hips to check for any serious problems. We are also pick up his elbow splints this afternoon that have been ordered because his arms are no longer able to straighten out completely.
Currently we are fighting with Haydin's insurance to get him a Kid Cart or a special wheel chair and hopefully with in the next few weeks we'll have a seating clinic appointment to get this all cleared up. Haydin is also going to be a part of the sleep clinic at the main campus Children's Hospital since his sleep patterns are sleep for a few hours then be up driving mommy crazy all day. Hopefully they can figure something out because this no sleep is taking a toll on his immune system and he's just always so worn out but cant seem to fall asleep without a fight. Haydin is now also being fallowed by feeding clinic to hopefully transition him from a bottle to a nubby sippy cup and to slowly thicken the kinds of foods he's eating and to keep him as far away from needing a feeding tube as possible!
This is the time of the year I've been dreading too, Haydin has all of his nuero, nuero surgery, c.p. clinic, MRI, opto, and EEG fallow ups. With all of these new updates on top of Haydin's school and weekly therapies at the close to home office and my night school I think I'm gonna end up dying of exhaustion and being over worked!
