Adapting, and Trying to Find Answers

[NOTE: This was posted a day after it was written, because I dozed off while typing..]

This year has definitely had its ups and downs.

In January BW spent six days in Methodist hospital in the C1 unit.  This was SO hard for all of us.  Hard on him being there, not able to come home, hard on us as parents in so many ways we can't even list them all, and hard on extended family because they took turns caring for our younger daughter, who wasn't allowed on the unit.  We drove over an hour each way to see him every day, and although we got there in the morning and most of the day, they said it wasn't enough.  They wanted both of us to be there for his every waking moment, and just watch us parent him.  It was hectic all around, and we couldn't do it as long as they wanted us to.  We understand that we need to be there, we do.  We WANT to be there.  But we both have jobs that we weren't able to go to, and a daughter who needed us.  And our families were being bothered by watching her.  And a dog.  He was released early from C1, and we were put on a waiting list for in-home behavioral therapy.  I have called and called, and I'm not getting any answers as to when a place might open for him.  The only place who offers in-home visits from the therapist doesn't return my calls, and passes me another number within the company every time.  But I keep trying, because I keep hearing that once you finally get in, it's the greatest thing since sliced bread.

He has had some progress since The January Incident (by the way, after insurance paid their part, our share is over $11,000), but I think getting back into the school routine has helped tremendously.  He even had great notes in his communication book the last two days before spring break.  Yes, the dreaded no-routine, again hectic time when there's no school and still no day care in town will (or "can") take him during these school breaks to give him some sort of structure..   He always seems to regress and take forever to recover from school breaks, but when he went back this Monday, I got another good note.  This is progress, people!

February brought strep throat and an otic infection for both of us.  Twice for him...  This led to this Tuesday's visit to the ENT specialist at Riley Hospital for Children in Indianapolis.  Concerns of mine were frequent strep, and sleep apnea, shouting out in his sleep, thrashing, and getting out of bed every night.  This was supposed to be his second day back to school since spring break, and he missed it for this appointment.  Another break in routine.  He did fine here today, so this means he is adapting.  This is yet another good thing.

Did you notice I said "here," and not "there?"  That means that we are still at Riley, and it's just after 3:30am on Wednesday.  The ENT specialist said there was a need for an immediate sleep study.  So as I type this, BW is snoring away in a bed a few feet away.  He likes going to the doctor sometimes, and today was no exception.  He smiled all the way here (an hour drive), and we talked about Mommy and BW having a sleepover together at the hospital.  When we got here, he was ready for bed, very sleepy.  Awesome, right?  Not quite.  He got scared when he was told that we needed to put some "stickers" on him in certain places before he could go to bed.  We started out by showing him the sticky pads without the wires attached.  This went ok-ish.  We took a little break, then she opened the cabinet and pulled out the wires that would be attached.  He instantly started gagging, then vomited all over himself when he saw the wires (from nerves and fear).  He freaked out when he saw them because he said he didn't want to be a robot.

By the time it was all connected, he looked like a Borg drone, and I felt so bad for him because he was SUPER scared the whole time.  We stopped several times to let him regain composure, pray for calm, and once to call Daddy we could do bedtime prayer together on speakerphone.  It did calm him for about 2 minutes, then panic mode struck again as more "stickers" and electrodes were attached.  He didn't like the head wires. (who would?)  He told the technician that putting "toothpaste" in his hair was gross and he didn't want it.  So we had to do a lot of convincing to get the rest accomplishied, but it happened.  I got him cleaned out of his vomit clothes, and gave them to the front desk to wash.  I laid down in the bed next to him until he fell asleep with his entire head wrapped and taped to keep all the wires from detaching.

Update to come. It's 3am and I'm signing out for the night.