An Update, A Goal and Some Tears

I finally spoke with Alistair's neurologist on Monday afternoon. After I recounted for her the past month's activities and observations, she decided to wean Alistair down to half the dose of the medication she wanted him on to see what that does. I do think at some point, when we started that medication, that is was doing some good for him. So hopefully backing it off, we will achieve that same level of helpfulness!

It's baseball season. Aside from lacrosse, Alistair's other favorite sport is baseball...of course they conflict and when we get back to fighting form will have to figure out how he can do both. Much like lacrosse and playing goalie, Alistair has become fascinated with playing catcher. He seems to find the position in each sport that takes the least amount of running but the brunt of the action! He has been hunting for a catcher's glove and finally got his hands on (in?) one the other day thanks to our very generous neighbor Andy who happens to be a Little League coach for both his sons and has ample equipment. Alistair was so excited to finally have one to try on and try out. But it came with a challenge in the form of not being able to put it on himself and even really use it right now. But for the first time ever, Alistair verbalized a goal for himself. This whole journey, we have had the obvious goal of getting Alistair back to 100%...that is pretty much everyone's goal who knows him. But Alistair himself has never verbalized anything like that other than wishing he could do something. So for him to ask if he can ask Brian if he can help him with getting his hand into the glove through stretching and other exercises was pretty cool! I gave Brian a heads up while Alistair was in the restroom, but Alistair followed through and asked him. They worked on it during his session yesterday and Brian gave him some stretching and some exercises to do at home.  

When we got back to Bothell, we had to go get Gillian. She sometimes goes to friend's houses after school on Wednesday so she doesn't have to go to Ballard and hangout at PT. Her friend's brother has baseball practice on Wednesday afternoon and that is where we get Gillian. We hung out for a couple, Alistair was watching practice and I was chatting with my friend. Alistair came wandering over at some point and plunked himself down on the hillside behind me with that look on his face of being upset and trying not to be. I walked over and asked him what was wrong. He then exploded into tears, upset that he couldn't play baseball. He cried and I attempted to comfort him through the "this time next year you will be out there" speech. He then went on to ask why was he born with a heart that needed to be fixed, why he had to have surgery and it is all God's fault. Well, how the hell am I supposed to answer any of those questions when I ask myself the same things to no avail!? 

I redirected him through talking about making goals and how awesome it was that he made this goal for himself to work with Brian. We talked about how recovery takes time and we need to be patient. Then I told him that he has every right to be upset and mad but he needs to remember feeling that way and use it to work harder to get better and to not be complacent with how things are now. He cheered up after that and we moved on. 

I just hope the next thing we have to deal with has a concrete explanation of what it is, how it is treated and how long of a recovery time. 

Some Back Sliding

If there was ever a photo to sum up everything about a relationship between two people, this would be it. These two, through thick and thin, really love each other and have so much fun together. Yes they argue and fight, but at the end of the day would do anything for each other!

 While upward trajectory is our goal, it isn't without some falling back. Alistair has been experiencing some back sliding in his progress in his upper body - arms, wrists, fingers and shoulders. He basically is curling in and losing function. This, we believe, is due to a new medicine he is taking and hopefully will be reversed through a change in medication. We notified Dr. Apkon last week after Brian, Alistair's PT, raised concern about his loss of range of motion over the past few weeks. We had noticed this too, but honestly thought it was due to the way tone works and how it can ebb and flow in it's intensity. Back in February we went to go see Dr. Ming, a neurologist at Children's who specializes in movement disorders. Dr. Apkon felt she would have some good insight into additional medications that could help Alistair break through the tone he has through his arms and hands. He has made significant progress in his legs and lower extremities. He runs, skips, hops and seems to be completely back to how he was before. But his arms and more specifically his hands and fingers seemed to be not responding as quick and we wanted to see if there was something more that could help control that tone so he could work on strengthening his muscles to help overcome the tone himself and start doing things like writing and drawing again. 

We ran into Monte and his family at REI one day recently! The boys were so excited to see each other, I could barely get them to stand still take a photo!

Dr. Ming was great and had some wonderful insight into what was going on. She put Alistair on a medication, Artane, that helps combat tone and spasticity and is used in treating Parkinson's patients. Once we were up to dose on that (through titrating up),  we have been weening off the Sinemet he has been on forever. We (Dr. Ming and Seth & I) all felt it wasn't really doing anything for him. While maybe the Artane is contributing to his current state, I don't believe coming off the Sinemet is contributing to anything; simply because we just started weening off and this new tightness has been happening the past few weeks. 

In the meantime we have to sit and watch Alistair lose abilities he was gaining. We wanted to see him break through and begin to write and draw more and now we are back to him using his hands like clubs and needing assistance with just about everything. Hopefully some medication tweaks is the answer. Dr. Apkon said something reassuring in her email, which I think she meant as a passing comment, which was, "with this type of brain injury, I wouldn't expect things to get worse." It made us feel better that that was the case, but then it is also ridiculous that that is our solace. Well, at least it can't get worse!  

All of this sucks. Yesterday Alistair made the comment after struggling to put on his shirt for 20 minutes, "If I hadn't had my heart surgery, none of this would have ever happened." All I could say was he was right. And yes, he needed his surgery and yes, we have seen the benefits of him getting his heart repaired. But it came at a detrimental cost. New engine, but the car can't drive. 

I have been finding myself more pissed off and angry lately, especially when watching him do things. Part of me wants to just do it for him so I don't have to watch him struggle and the other part of me sits there and silently gets angry about my broken son. Alistair has always been complicated, he was born complicated, he came home complicated and he has grown complicated. He didn't NEED to be MORE complicated. I'm not saying "why me?" It's just painful to be a parent and watch your child physically struggle with something you have absolutely NO control over. There is no quick fix. We can't lower his seat so his feet are closer to the ground or hold his hand until he gets his balance. We can't give him tips on holding the bat different or tell him to use two hands to catch. It's frustrating and gives you an absolute feeling of helplessness.

Meeting 'Dubs' The UW mascot at Huskey Fan Fest

Hopefully we can get in to see Dr. Ming this week and get back on track. Onward and upward...