Biscuits and Gravy

Gorgeous sunset view from our room!

The nutritionist comes by every other day and we chat about the food Alistair is getting and what he has liked and what he hasn't liked. The food is very much hit or miss, mostly miss. Alistair loves biscuits and gravy and I asked her about it. They have pureed biscuits and she thought adding the country gravy would be okay. Well, Alistair FINISHED his bowl of biscuits and gravy this morning...Seth was hoping there might be a bit left for him! :) I have a feeling this will be a frequent breakfast item! 

I apologize for the lack of posting over the past few days. I have had a number of people check in to see if everything is alright since there has been nothing posted. All I can say is there is hardly time to do so! The last few days have been busy and exciting. Alistair has been making progress in leaps and bounds. The recreation therapist, who met with Alistair last Tuesday, was gone for the last week. She stuck her head in on Monday as they had been talking about Alistair in their Monday morning huddles and she was incredulous it was the same kid, she had to come see for herself! 

Over the past few days in PT, Alistair has done some unassisted sitting on the mat tables - at first for intervals of 16-20 seconds and has worked up some additional stamina! He has also sat in actual chairs, not wheel chairs...he did so today for school. 

He has done some assisted standing on the tilt table as well as working on pivot transfers where you have him stand while supporting him to move him from the bed to chair, etc. He likes standing as I think it feels good to be upright and stretch out some things. He is getting a lighter wheel chair tomorrow as he was able to endure most of the day in his wheelchair without a headrest...we did give it to him for a break during lunch. He was taken off of sternum precautions, so a whole new world has opened up for Alistair to be able to work on his strength and movements. His occupational therapist is excited for him to be able to use his arms more and bear weight or lift weight. As he works on more standing, he can use his arms for stability as well as use them to help sit up after rolling over. His OT has also been working with him on using his hands and fingers. Today she had him playing a game on the computer using a mouse. During the session, he was moving the arrow to start the game over. Instead, he chose a better game to play, but it required using the arrow keys instead of the mouse. She was a little concerned this might prove to be too difficult, but he managed just fine and went to town playing the game with little intervention from any of us. She told Seth later that it was pretty impressive. 

Alistair helping put his foot plates back on his chair

The one area that continues to be a challenge is speech. He pretty much has no articulation and cannot speak. He has a voice and sounds, but no words. He has become quite adept at using his alphabet board. When he spells stuff out he spells out whole sentences instead of trying to just get the point across with main words; which I think is pretty cool and truly illustrates how much his cognitive skills are intact. Today he was looking at some photos of the future Concorde designs and one was particularly fat and ungraceful looking. He asked for his board and spelled out to us, "That is one messed up Concorde!" This is one area that I am perplexed as how to feel about the future. I know speech issues can be overcome...we did it once before. But I don't know if this is a tone issue related to tense mouth muscles, or if this is truly starting over from square one. Only this time he knows all the words, just needs to relearn how to say them with his mouth. Time will tell.  

Petting Paddy in his favorite place!

In medical news, the wound nurse came to do a dressing change on his sternum incision and decided he didn't need the wound vac anymore. So Alistair is officially no longer tethered to any devices! He still needs a dressing change every few days, but his incision is healing nicely. Alistair continues to suffer off and on from a slightly swollen right arm. The cardiology team decided to have it dopplered to see if there was anything internally causing the issue. As it turns out, he has a small blood clot that is not completely blocking the flow of blood, but limiting it. So he has been put on Lovenox injections, which is now a source of anxiety two times a day. They put numbing cream on his skin about 20 minutes before they do it. I don't think he actually feels the poke, but the cream is a signal he is getting a shot and then frets about it. I think once this happens a few times and he realizes it doesn't actually hurt, he will calm down about it.

Bird's eye view of the helipad

Tonight Alistair was injected with Botox. This is a drug that rehab doctors have been using for years to help with tone and dystonia. Alistair has been suffering from both tone and dytonia and it is more debilitating for him in his arms than anywhere else. His right arm is always straight and he can't bend it easily himself. This is partially due to the shortening of his tricep muscle from not being used and also the tone in it causing it to always be flexed. The botox should help the tricep relax and allow Alistair to engage his biceps and deltoids as well as lower arm and wrist muscles. Similarly on his left arm, Alistair has very tight bicep and deltoid muscles that cause his arm to be bent most of the time and rise up over his head or near his face. Last night he started involuntarily jabbing himself in the eye with his thumb. So the botox he received in that arm should help him keep his arm down and be able to straighten out his arm. Originally they had talked about his calf muscles too, but have found through the standing he has been doing coupled with the night splinting on his left foot (and right soon, when that splint comes in), it is helping relax his leg muscles and allows him more fluid movement as well as better range of motion and stretches through his ankles and feet.  

Doing an assisted stand with Dad

The therapists all seem genuinely optimistic about Alistair and his progress. From what we can tell, everyone around here are straight talkers and don't extend themselves. Of course they want to celebrate any accomplishment as they are huge deals, but they don't gush about things. All of his therapists as well as the doctors are so excited about what Alistair has done in the last week. In fact, his PT made the comment that she needs to revise his goals he needs to meet to go home as Alistair met in a week what she thought he might be able to accomplish in a month. He is far from ready to go home, but he is making huge progress. He is a hard worker and has such a great attitude about it. He has not proven to be difficult, yet. I am sure there will be some push back at some point. Tomorrow is our next family conference, we are very curious as to what they have to say about Alistair and what they feel is in store for him.