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!

                                      

So long 2015!

Airlilft Northwest display at the Children's Museum!

New Year's Eve...a time to reflect back, a time to look ahead and a time to celebrate. We are truly, truly blessed. We have a HUGE village around us who have demonstrated their love and support for us, we have 2 fantastic kids who fill us with pride and happiness on a daily basis and we have a truly wonderful life together.

But 2015 can go away now...we are done with it!

Kids taking it easy in the sun while we packed up camp!

Doing a little scootering before dinner

Alistair is doing great. He continues to improve, though more slowly. His speech is getting more clear and he is easier to understand. His hands continue to see tiny progress. He is still not able to write or draw. He has done some coloring and attempts to write, but it is not there yet. He can do Legos like a champ and spent the past few days putting together a set with 884 pieces mostly by himself!! He still needs some help in the bathroom and with showering. Depending on the pair of socks he chooses, he can get his socks and velcro shoes on by himself, which is awesome!! He gets on and off the school bus all by himself now, no need for a boost up or hand down. He has pretty much mastered buckling himself in all of our cars now, although he still needs some help from time to time. He has another check-up with his rehab doctors soon and with his cardiologist in February. 

Alistair and his newest Lego set - DONE!

School is going well. He continues to do great with math and on his tests. His is still an avid reader and through Dora, his para, has written some very Alistair-esque stories for class assignments. I am glad, despite his additional needs in class, he still enjoys school and being there. He has been very active at recess, most recently playing football. He came home one day on the bus and as he got off ran over to me yelling, "Mommy, Mommy, I scored a touchdown at recess today!!" He was so excited! I even heard about it from another parent whose son was so excited for Alistair! Over winter break, he had some therapies before Christmas, but I also made time for him to have some play dates with friends. With all his therapies everyday after school, it doesn't afford him the time to go over to a friend's house or go play at the park! He really enjoyed getting to spend time with friends and go to their house to play! 

Heather Lake up by Granite Falls

Seth and I are doing well. The kids have been with Grandma and Grandpa this week while we took some much needed and deserved time off. We have seen some movies, went on a hike with some friends, had dinner and drinks with friends, did some homeowner responsibility stuff and just generally relaxed. I feel guilty that we didn't use the time to go somewhere, but then I think about how relaxed I am since I have nobody to be responsible for but myself. Poolside in Arizona or hanging in my PJ's in my house...either way I feel fine (truth be told, I would LOVE to be poolside in AZ)! We have talked to the kids just about everyday and I do miss them. But I am also enjoying not having them here for a few days!

Trip to Northwest Trek for his buddy Ethan's birthday!

Trip to the aquarium in November - their favorite!

That being said, we do still find ourselves feeling sad and discouraged from time to time. I sat and watched Alistair flip the school lunch calendar over on the fridge after he realized it was on the wrong month. It took him about 5 minutes to grab the magnet, the calendar, get it all turned the right way and put it back on the fridge. He did it and that's great, but it pissed me off to see him struggle with something so simple. He struggles with lots of stuff like that but eventually gets it. He is determined; I don't think he thinks about stuff being easy for him before, so he doesn't get discouraged. I think we do a good job of hiding our emotions and just cheering him on. 

Getting ready for Christmas and cleaning up to decorate, I have come across lots of his drawings and things he made that he wouldn't be able to do right now: sketches of planes, of Disneyland from last January, of our new trailer. They made us Christmas gifts in both of their classes. Alistair's is a really cool picture of trees in snow. The trees are made of various colors of tissue and there are hole punches for snow falling. It is very pretty and wintry, but I know it was mostly done by his Para. I am sure he was involved in the design and maybe some of the process. It doesn't mean we can't enjoy it all the same, but it just doesn't have that "made by a kid" look to it.

I also still struggle with my misguided guilt over the whole surgery and subsequent events. I say misguided because I know I shouldn't feel guilty. But every morning I see that huge scar on his chest and it reminds me of everything. I feel bad, even though he seems to be trucking along just fine, that he has these set-backs and hurdles to get over. He doesn't complain, and I wouldn't blame him if he did. I am sure over time I will be able to resolve these feelings. If he can regain full use of everything and be able to enjoy everything he did, that would certainly help! 

Gillian is doing great. She is a very good student, loves Math, Art and Reading/Writing. She is really working hard at reading and loves writing. Some of the ways she finds to spell words is very creative and interesting...makes it fun to figure out what she wrote. But even that is beginning to rapidly improve. She is doing very well in gymnastics and has moved up in levels. She continues to be a very helpful sister and aids Alistair when he asks. They have so much fun together. She is so silly and creative and gets Alistair involved (which is something he never did at that age) and they laugh and laugh. They also fight and do the typical sibling stuff. On the one hand it is annoying, but it is also normal which is nice! 

Case in point!

We would like to once again thank everyone for your support in every way. The fund that was set-up for us is beginning to help us once again. We used it initially to pay for our flight home and some medical expenses we incurred in bringing Alistair home from the hospital. In November we maxed out our outpatient therapy benefit and have been paying out-of-pocket for all of his visits. Even with a cash payment discount...yikes! Seth is working with the insurance company to see about converting the remaining inpatient therapy visits to cover outpatient. So far no dice, but we also haven't heard "no" yet! Stay tuned! I hope in the new year we might be able to scale back on his therapies a little, maybe not 6 days a week. That would be nice on many different levels!

On our way to see The Nutcracker!

Merry Christmas to those we weren't able to send a card to or didn't see. We had a wonderful holiday celebrating with friends, family and neighbors. Christmas is truly a magical time of the year, no matter your age! Happy New Year and here's to a healthy, happy and exciting 2016! 

Ding, Dong the Shots are Gone!

The best news that came out of Wednesday's appointments was Alistair's blood clot is gone and therefore he doesn't need to continue his twice a day shots! Yay for everyone! Now his poor banana-bruise legs can HEAL! We had an ice cream cake appropriately decorated to celebrate the occasion!

Alistair had a great visit and check-up. All his doctors and various therapists couldn't say enough great things about how he is doing and how great he looks since they saw him last. The physical therapist said he has little to no tone left in his legs, has improved strength and range and seems to be moving quite well! The occupational therapist also was pleased with his range and movement changes since he left but also recognizes that his fine motor skills are slow to return. Although he is able to move his right arm and can reach and bend and stretch, he is still experiencing significant tone throughout his arm which makes it slower and creates tension in working the fine motor movements. She gave us some ideas as to how to work with him at home in addition to his outpatient appointments.

Wednesday was a check-up day for all the kids who discharged around the same time. Alistair was over the moon to see Daniel when we came out of our PT appointment. He ran over and hugged him. From talking to his mom, they had plans to meet up with Monte and his family for lunch at U Village and invited us to tag along. So we did and the dudes were reunited! They have all come a long way. It was fun to see them together! 

Dr. Apkon was very happy to see Alistair and was extremely pleased with the progress he has made. She has suggested we see a neurologist who specializes in movement disorders to see if she has any thoughts on Alistair's face and the tone he continues to experience in his lower jaw. If it wasn't for the tightness through his jaw, he most likely wouldn't require speech therapy! Neurology has different medications he might be able to try to combat this. 

It was a very long day at Children's, but it was fun to see everyone! We went and visited the unit and saw many of the nurses we had. We saw Betsy, Alistair's OT inpatient, and Alistair invited himself (and us) to have dinner at her house sometime! She lives on a house boat and has a golden named Lily (who is a therapy dog at SCH, visited Alistair many times!). She said they would love to have us! :) It was a very surreal feeling to be there and around everyone. It was like a college reunion. You see all these people you saw every day, sometimes at the 3 in the morning, sometimes before you were out of your pajamas and eating breakfast, or throughout the day between appointments, and now are catching up on what has been going on since you left. 

But at the end of the day...we got to drive HOME! :)