Botox Update

How is the Botox working? What did the Botox do? How are things going since the injections? I apologize for the delay in reporting about how the Botox is going since it was done…summer has hit the ground running for us!

The Botox seems to be doing its job and Alistair seems to be slowly regaining his function. It isn’t an overnight process by any means and even as I type this he is sitting next to me on the plane to Boston doing his iPad with his right elbow firmly jabbed into my arm or side as he can’t sit with his arm all the way straight and relaxed.  But nevertheless, he has begun to use his right hand again. He needs some prodding as he has become accustomed to using his left hand. We have to remind him he has two hands…use it or lose it! He has held glasses in his right hand had taken drinks, he is holding his fork with his right hand to eat, he has become less dependent on us to help him with Legos because he can now hold them with his right while he builds with his left (eventually we would like to see that reversed!) and yesterday he willing colored at lunch at the restaurant. He asked Seth to make some outlines of spots on a cow that he could color in. It was a bit of work and he had to take some breaks to rest, but he did it and was pretty darn proud of himself. His therapists are over the moon at the changes and so glad to see him moving back in the right direction…as are we!

As I mentioned above, we are heading out of town. Our trip to Chelan last month was a blast. The kids had so much fun playing in the pool for 5 days and we enjoyed just relaxing and not having a schedule. This trip, we are heading to the East Coast for 3 weeks. When we land tonight, Judy will be picking us up and we will drive 2 hours north to Meredith, NH which is on the shores of Lake Winnipesaukee. We will stay at a family cottage on the lake through Sunday where we will swim, boat and relax. Then we will pack up and drive about 3-4 hours south to Cape Cod where David and Judy have rented a house for us, them and Ethan & Jen and kids to stay for up to 2 weeks. We decided to do the whole 2 weeks. This is our summer re-do and we are re-doing it right! We will be staying mid-Cape in a town called Brewster, MA (we stayed there 6 years ago). There is a great swimming beach with great sand castle building sand nearby and a trail similar to the Burke-Gilman trail for walking and running. We are thinking about taking the kids into Boston for a day or two…they spent about 6 hours there 2 or 3 years ago, but otherwise haven’t been. We don’t have a lot nailed down right now, we will just go with it…it’s vacation, right?

As an aside, I do have to say Seth and I are having a hard time right now with it being a year out. We both find ourselves thinking about the date and reflecting on what was going on a year ago. Guilt, sadness and anger boil up occasionally and rear its ugly head in the worst places. I don’t remember things as vividly, but I definitely remember the emotions. I have a specific event that pops up in my head and plays and it makes my heart cry. It was the first night I spent the night in the ICU with Alistair after he focused so hard to utter the words, “I want to go with you home.” Everyone was telling him good night and talking about going home and seeing him in the morning (home, of course, meaning the rental house). This was the first day he seemed to be tracking and communicating a little, and it was also the first day he started tremoring, which was scary for all of us! But the way he took my hand, pressed it against his face and looked at me while saying that phrase haunts me and creates a wave a guilt that then washes over me. I don’t think I will ever forget it.

But focusing on now, things are looking up, and that is good. 

Bittersweet Anniversary

Today marks a year since Alistair's surgery. One year ago today we had our worst day ever. It began as a day full of hope as we looked ahead to how having this surgery would change him for the better...more energy, more stamina, and a heart that worked the way it was supposed to. We had a lighthearted morning, trying to keep Alistair from getting too nervous and even enjoyed Alistair high on Versed batting at triangles in the air and making sure we could see the TV that was mounted high-up in the corner of the room. He went back alone, he wanted it that way and even though we both longed to accompany him for as far as we could, we wanted to respect his decision. Hours went by as we paced and checked emails and texts, kept busy with puzzles and books and found things to snack on. The nurse finally came to get us as the surgeon was ready to talk with us on how everything went. He told us things went great, the fix was a success and they were just monitoring his pulse and getting ready to close him and bring him up to the ICU. We were elated and relieved. Phew, we were on the road to recovery.

After lunch all hell broke out and I honestly cannot remember much beyond the tiny room they put us in to talk with us about what had happened. The faces of the people who came in were long and expressionless. They spoke to us and explained things and you could tell they couldn't even believe what they were telling us. Their words were confused and guarded, it was obvious that what they were saying was unrehearsed and they were doing a quick mental check to use their patient and family care training as they tried to put words together. There was no plan, they were coming up with it as they spoke to us. The word 'if' kept being used and I was getting confused and thought I wasn't reading the situation correctly. I finally put my hand up and with all the strength I could muster to not breakdown asked, "is he going to die?" The doctor, who to this point was really trying hard to be calm and collected and explain things to us in a not panicked manner, looked at me with a blank stare for a second and said "we are not thinking that way right now." Then I said, "can you please stop saying 'if' and replace it with the word 'when'? It is more hopeful, 'if' sounds ominous and hopeless." He smiled and agreed that 'when' was better.

The rest of the day was a blur. I don't think we fully understood the extent of everything until days later. The hope we had for his surgery quickly faded away to sadness, confusion and anger. Eventually the hope came back, but it is different. We hope for a full recovery, we hope for a happy, healthy son, we hope for normalcy, we hope for freedom from therapists, we hope for Alistair to play sports again. But mosty we hope for this entire experience to be behind us and out of our heads. 

We recently listened to an interview with Norman Lear, who is a TV producer and writer, known for among others things "All in the Family" and "Sanford and Son." He spoke about his philosphy on life and the two words he lives by, "Over" and "Next." When something is over, it is OVER (you don't dwell on it) and you look forward to what is NEXT. The sweet spot is a hammock hanging in the middle where you live in the moment between over and next. I found this is be a very freeing and intriguing philosophy and find myself thinking about it a lot. This past year is OVER, we don't need to dwell on what if's, why's and how's. We look forward to what is coming next and for the moment we focus on today...our happy son who spent the day swimming with his sister and cousins in Hood Canal, had a picnic lunch of fried chicken, potato salad and watermelon on the beach with his family and got misty-eyed tonight because even though he was happy to have us back home again, he missed his Nana and Papa he just saw 4 hours earlier because he had so much fun. That is what is important and that is what is NEXT. 

Quick Check In

The day went well! We hope to see some results in the next few days.

We arrived at Children's this morning around 9:45. We got all checked in and then they took us back to the intake area. We got Alistair all changed and cleaned and ready to go. He occasionally got a little concerned or stern looking or maybe a tad weepy, but Seth kept the humor moving and distracted Alistair with jokes. Dr. Apkon came in and chatted with us and Alisair as well as did a thorough exam. She marked all his areas she was planning to hit with a black "X." Today she asked about his thumbs and strongly encouraged that we do his thumbs as well. She hasn't steered us wrong yet, so we went along with it. 

Once she left, the remainder of the team came in to do last minute checks to make sure they had the right patient, the right procedure, etc. Then it was time for Alistair to go. Seth was going back with him until he was asleep. I told him to come give me a hug and get his friends (David and Tracker were his support team today). He came over to me, hugged me and buried his face in my shoulder. I think we was trying really hard not to cry, but was definitely weepy (I was doing the same thing!). Then the anesthesiologist asked Alistair if he knew any good jokes. I whispered in his ear to tell her the Cannibal eating Clowns joke and he giggled and turned around to tell her the joke. They walked down the hallway telling jokes and even went to sleep attempting to tell a joke..."what do you call a bug with 4...4...4...zzzzzzzz"

42 minutes later Dr. Apkon came out to find us in the waiting area. She was pleased about how everything went and felt confident she got all the areas as thoroughly as she wanted. Not long after we were paged that he was in recovery. We went back and he was wide awake and entertaining the nurse who was tending to him. They loved him. They kept saying things like "if only we could bottle your attitude and spread it around to the other patients!" "You guys are havng WAY too much fun in here!" They were sad to see him go, but knew he was anxious to get to Lake Chelan!

So they let us go finally, we got on the road and here we are. We are looking forward to a few days of R&R. We are also looking forward to seeing what kind of results we get from today! 

No More Wrinkles!

Tomorrow is a big day for us. Alistair has an appointment at Children's to have Botox injections...finally! We have been struggling with this loss of use thing and contortions in his right arm and hand for too long now. We went in to see Dr. Apkon at the beginning of June. It was decided at that appointment that he needed to come off his Artane completely and get back on his Sinemet...get him back to baseline where it was all good. She also decided it was time to take some additional measures and get us set-up for the injections. 

Since he has been off Artane and up on Sinemet we have noticed subtle differences. He seems more relaxed in the morning on the right side. But as the day goes on and he gets tired of fighting the tone in that arm, it comes up more and more until it is tight up against his chest. His left arm is much more loose as is his hand. He still doesn't keep his wrist in a neutral position...though he is getting his palm down to support himself instead of doing it on the back of his hand! 

The plan for tomorrow is to inject his bicep on his right arm as well as the some muscles in his forearms to help get his wrists back into neutral positions. They are doing this under anesthesia. Dr. Apkon feels the best way to get the best results is to do this with him out and relaxed so she can accurately pinpoint the targets using her e-stim machine. Last time he had Botox, when he was inpatient, they just numbed the areas. But he was awake and tense and she feels she didn't get as accurate as she had wanted. 

I am focusing on the outcome of all this, why we are doing it. I am not excited at the part where we walk him back, get him prepped and leave him after he is sedated. Last time we did that, it didn't end well. But I know I can't think that way. The best part is as soon as he is done, we are getting in the car and driving to Lake Chelan for the remainder of the week. 

Alistair finished 4th grade last week...crazy to think the school year is over already! It ended up being a good year despite the additional activities and needs. As he has done since all this happened, Alistair maintained a great attitude and outlook on everything and did great! He was a bit sad about ending 4th grade and is apprehensive about starting 5th...but we will just take things one day at a time for now! 

I will try to get an update tomorrow about how things go. If you could send positive thoughts to Children's around 10am, it would be most appreciated! 

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...  

2016...so far, so good!

Alistair spied the car in the parking lot at school one day on his way to recess. He had his para take a photo of it and send it to me commenting on the nice car!

Well, so far 2016 is treating us very well. We had a great Christmas Break. The kids started back at school and we have resumed our semi-busy lives. We have officially backed off all therapies to one day a week per visit (OT, PT, Speech). We know we are going to max out on our visits for the year, but it would be better to max out in June versus March! The other reason we felt ok doing this (as well as his therapists) is because he is getting an hour of OT/PT and an hour of Speech at school every week in addition to his outside therapies. People continue to see changes and improvements in Alistair. He had an appointment with Dr. Apkon last week and she was very pleased with the progress he has made since November. She noted that he has little to no tone left in his legs and feet and that the tone in his arms and hands seems to have decreased as well. He continues to struggle with his hands and the use of them for writing, coloring and drawing. His mouth also continues to be tight across his upper and lower lips. We have an appointment with a neurologist in a few weeks to see if she might have any thoughts on that or on anything pertaining to his medications: if he needs the ones he's on, if different ones would be better. Dr. Apkon has also mentioned the Parkinson's Mask when speaking about his face and wondering if there might be something to be done through that thought process. We shall see in a few weeks.

The kids love playing Just Dance together. Alistair has one song he really likes and they do it a lot. Whatever gets them up and moving...and having fun together!

We see Dr. Lewin on Monday. Alistair hasn't seen him since November. We are finally beginning to see some positive effects of his surgery and the whole reason we decided to do it. Alistair seems to have more energy and is more willing to be active and do things with us! He also seems to not get tired as easily as he did. He has been killing it with his fitbit, routinely kicking all of our butts! Of course he has much shorter legs than the rest of us and thus gets twice as many steps. But still...reflecting back to when he first got it and was getting 6K steps and now he is getting 13-17K PER DAY! 

                                                       

Alistair is becoming the new Zack the Lego Maniac! For Christmas he asked Santa for the VW Bus set. It is an expert level set. He put it together in 11 days! Seth then wanted to keep the momentum (and OT work) going and bought the expert level Mini Cooper and paid Alistair in a lego set to build it for his office. Alistair built the Mini in 5 days and is now working on his payment, the Lego City Training Jet Transporter. 

                                    

Next week Alistair is jumping in the Jump Rope for Heart fundraiser at school. Gillian jumped on Friday. They are working together to raise money. All the proceeds go to support the American Heart Association, which has become a very important organization to our family, Alistair and Gillian (with a little of my help!) put together their website and reasons for why they wanted to participate in the event. They are collecting money through next week. Here is a link to their page if you would like to support them 

http://jumphoops2016wsa.kintera.org/faf/donorReg/donorPledge.asp?ievent=1143415&lis=0&kntae1143415=A22EEEA7CB374FC2AC1C6C4E0E4F9B46&supid=375797983

                                                        

Lastly, Gillian is Daisy Scout (first level of Girl Scouts) and she is currently taking cookie orders through Thursday. If you would like to order some cookies, she would LOVE to sell them to you!