Steps to Walking

**For some reason my computer is not behaving and cannot get photos uploaded. I will add them later when I can. Just wanted to get some info out!!**

Alistair has had a very active few days. He has been playing lots of word games in Speech and kicking butt and taking names along with being comic relief. In OT, they been trying to tackle his right arm and get it to bend. The botox didn't really have the affect they were hoping it would on his triceps and they are still dominating his arm function. So they have decided to try serial casting to see about engaging his other muscles and stretch his tricuspid. People have asked about the green cast he is sporting in some of his photos; that is what it is for. He wears it for a while and takes a break. We try to get multiple wearings a day. His arm has been bending a bit better and he has been able to get it going on his own a bit. Yesterday they introduced some electro-stimulation to his bicep to get it moving and engaged. It seemed to respond okay. She is going to try to do that on a daily basis as well. We will keep working on it. 

PT has been keeping him very busy and sweaty. He did more crawling for a longer amount of time, has been doing some stretching and finally more walking on the parallel bars. Yesterday afternoon, his therapist decided he was ready to get fitted for a walker! The one we tried was one you hold and it is all behind you. He did okay. He was bit nervous and unsure, but he went down the hallway twice with it. His right foot, along with his right arm, doesn't behave either. His foot doesn't want to come down all the way and he ends up walking on the outside edge, kind of on his toes. They are going to make him a walking orthotic that will force his foot to come down. He wears splints when not up and about that help stretch out his heel chords. So hopefully with doing more walking it will help his foot remember how it is supposed to work. There are 2 other styles of walkers they are going to try with him. I suspect he might decide he likes the one that he used yesterday, but we will see.

Yesterday was the first time I have seen Alistair get upset about his condition. He was working on the mat in OT and one of the kids walked through the gym. He started to sob because everyone else is walking and he isn't. Then he also got upset because he can't draw. We acknowledged his feelings and told him it wasn't fair that he has to relearn all of this stuff. But then told him he is working so hard and in not time he will be doing both of those things. I also then pointed out to him that most of the kids are in wheelchairs and some of them are also walking. The girl he saw was only in a wheelchair 4 weeks ago when we first arrived and now she is strolling around without a chair. I told him he will be doing the same soon since it seems to be how he does everything else! 

I also had a few moments the past few days. I was walking through Fred Meyer and there were swimming suits on the clearance rack. I found myself feeling angry that summer was just about over and we didn't get to enjoy any of it. We had 2 weeks after school ended. Thankfully we crammed in a camping trip and a hiking trip, but didn't do any other summer activities. Then yesterday I saw Halloween candy out. I know retail starts everything way too early, but even so to be in that time frame where they deem it time to put stuff out mad me feel anxious and again angry that fall is upon us already. "No fair" came to mind, but I just can't embrace that phrase for some reason. I don't think it is fair for Alistair, but for me it is an inconvenience and part of being a parent. If I didn't want my life to be interrupted, I wouldn't have had kids! This whole thing is WAY more than any of us thought we would be dealing with for sure. And although it is happening to all of us, it is Alistair who is most impacted. If he can do it with such grace and humor, then we need to follow his lead!

Seth and Alistair ran into a familiar face the other day. When we were at Children's in the NICU 9 years ago, we had a lot of great nurse. But none were as great as Ramah! We all really clicked well and she took such great care of Alistair. She gave him his first bath and was there when we first got to hold him. I had messaged her recently about seeing her and she said she has been trying but getting out of the NICU is pretty difficult. Seth and Alistair sent to Starbucks by the ED and there she was grabbing a coffee! Hopefully we will see her again, but I know they were happy to see her!

Today is our Family Conference at the hospital and Open House at school. We are taking Gillian to school and decided not to bring Alistair. We felt it would be way too much today and might be a bit overwhelming for him. We are looking forward to meeting his teacher and chatting with her. I am also looking forward to hearing what the doctors have to say in his conference. Details to follow!