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! :)

Quickie!

I see my link for the blog on my toolbar on my screen and I think, "I really need to do an update!" And then something else comes up and it doesn't happen. This update will be super short. Today we had a meeting to go over the evaluations school did with Alistair in order to move forward with setting up an IEP (Invidualized Education Plan). Nothing was a surprise to us in the needs portion of the evaluation...he definitialy needs his Para-Educator to help him in class and around school with actions using his hands and arms. He needs speech, occupational and physical therapies at school and will qualify for them. The thing that was more suprising, but pleasantly so, was that socially, emotionally, mentally and cognitively he is soaring! The psychologist met with him a few times and said he is aware of his limitations and is not afraid to advocate for himself, he has a very positive outlook on things and seems to be happy! His academics have not been affected; he participates in group learning in class, he is understanding new concepts and retaining information in math and has great reading comprehension and retention. So, so glad to hear! 

Tomorrow Alistair has his BIG check-up appointment with Rehab at Children's. We will be there ALL day and he will see all the therapists, Dr. Apkon and the psychologist. It will be interesting getting their perspective on things since they haven't seen him at all in 7 1/2 weeks! I will make sure to give a full report in the next few days on all that was discussed!

School Jog-A-Thon - Alistair did 5 or 6 laps and even did some jogging!

Snow White and the Zombie - Alistair wasn't going to dress up this year and stayed home to hand our candy with Seth. At the last minute, he decided to answer the door as a zombie and got a shirt that unbuttoned! People thought it was cool, some were a little surpirsed his scar was real!

Resuming Life!

Sorry for the delay in reporting, our lives are SO incredibly busy during the week and the weekends have been filled with a combination of relaxing and fun things.

Alistair is doing well. He is enjoying being back at school. He is in his fourth week now. He is staying all day with no problems and participating in his therapies after school with gusto and determination. His therapists all make comments about how he is such a hard worker. Everyone who sees him says he looks better, "even in the short time since I saw him last." It is hard for us to see that since we see him all the time. From our side, things seem to be getting better slowly and in the meantime we are dealing with the side effects of his trauma. Everything is harder and messier and slower. Alistair needs help with just about everything. Nothing is done without one of us involved. It makes everything take longer. Sometimes it is fine, sometimes it is frustrating and stressful. Patience is the key. But then he does stuff like put together almost an entire Lego Race Car without much help. That kind of stuff is nice to see!

Everyone always asks how we are doing and I usually say fine, hanging in there. Usually I do feel that way, sometimes I just don't want to go into it. It's hard to really pinpoint how we are doing. We are tired, we are stressed out, we are trying to stay positive and be a cheerleader for Alistair while trying to manage his emotional state and keep him from getting too discouraged. We are also trying to manage Gillian's emotional state and not make her feel less important or left out. We are trying to live some semblance of a normal life with the normal things we used to do in the evenings and the weekends. We are sad and we are pissed, especially when we see things like his Smarter Balance test scores and how he scored Above Average on Reading and Writing and Average and Above Average on Math and wonder if it would be the same now or if he has been screwed over on that too. Some days we have the Dory way of thinking, "Just Keep Swimming" and other days we have the "F This" way of thinking. But all of that waxes and wanes...we have good days and bad days.

This past weekend marked a month since we came home from the hospital. It is certainly nice to be home, it is great to be able to cook and eat regular food again and it is nice to not be driving back and forth to Children's and splitting our time. When we first got home it was blissful and we were writhing in joy over the fact that we were in our home. Everything else was secondary. Now that we have been here and are reacquainted with our Bothell selves, it's just insanity and busy, busy. I figured it would be the case when we found out how much therapy he would still require once he was home. Add that to Gillian's gymnastics, squeezing in homework and reading logs and finding a few minutes to eat dinner together and we are skidding into bedtime at 8:30! Never a dull moment around here! 

Alistair is enjoying life and getting out and doing stuff. Nothing has been too much for him, he hasn't let anything stand in his way of going out. He went on a field trip with his class to a corn maze, we went to the Kangaroo Outback Farm in Arlington where he fed a alpaca with his lips (see above!), he went to Brickcon and the last Mariner's game of the season with Seth...all on the same day! And last weekend we resumed one of our most favorite past times...camping! Alistair loves getting out camping and was beyond super bummed to learn that we had missed so many trips this summer. He did great! He walked to the beach a few times, ran around in the woods with his cousins and even was able to use his controller for his R/C Jeep with two hands! He has yet to resume his campfire assistant duties...but that will come! We really enjoyed being out doing something normal again too. Except for the medicine and shots, I almost forgot about this summer!