This past week we took a vacation to Montana and Yellowstone. We traveled by car, were joined by my parents and stayed in my cousin's vacation home in Pray, MT. It was a wonderful week full of new adventures and outings and giving the kids a new outlook on the magnitude of nature and the world we live in. As we were driving home, kids plugged into their iPads and Seth reading his book, I began to think about the time of year and then the date and then it dawned on me, we passed our 3 year mark without a thought! July 10th had come and gone and we didn't think anything different about it. It's not that we don't think about it anymore, but the reminders of it have become less painful and less sharp in our minds. Every time Alistair has his shirt off, we see his cardiac surgery scar. It used to give me a pit in my stomach, but now it is just part of him. He isn't 100% better and who knows if he will ever be. We have had so many people over the years tell us about someone they know who had a similar event happen to them and had this long recovery process and now you would never know anything was different. I hang on to that for Alistair, but also realize that it may not be the case for him. But I also have to believe that as he gets older, bigger and stronger some of this will be able to be overcome or may not be as big of a deal for him. He still has his fine motor skills struggles, still has a para at school and all that. His face is still tight and occasionally hinders his intelligibility, especially when he is tired. Still seems to be the theme. No matter what we do, it is still.
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| Wild Horses Monument in Vantage, WA |
The most annoying part of it all is that we have no idea when it will be better, maybe it won't be or maybe it will be in 3 months. There is no telling. Just when we think we have experienced everything we think could be affected by this, something else jumps up and rears it's ugly head. We have discovered that because of the tightness in his lower jaw and chin, his lower teeth are being pushed back and are beginning to point toward the back of his throat. His orthodontist has placed a metal bar behind his teeth to keep them from further movement until his whole mouth is ready for braces. But unless that dystonia in his face goes away, that will always be a problem. The latest thing we discovered is having a para in school is hindering his learning in some ways. Math was a challenge this year. He struggled off and on throughout the year. He has always been bad with his math facts, but for the most part gets the concepts. He was hovering around a C+ at the end of the year and had a retake to do. His teacher said if he aced it, he could pull his grade up to a B-. Well we worked and studied and did problems for 2 1/2 days and lo and behold he did it! Upon meeting with his teacher and strategizing for next year for his next teacher and para, she mentioned that because he can't take his own notes and his para does it for him, there is no reason for him to pay attention. The onus is on him to do it regardless, but it never occurred to me that he would totally tune out. So that was annoying. Here I thought having a para and having to talk through everything to be written down would give him a leg up when in actuality it was hindering his learning ability. We have come up with some ideas as to how we can work with this next year as I don't think there is any end in site for needing a para. He does have an iPad for school, but he isn't so quick on it that he can rely on that for notes.
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| Tacoma Rainiers game on Father's Day |
We have fallen off the therapy wagon. At some point he didn't really seem to need PT, in our minds. Speech is only in school and we had a whole thing happen with his OT that left us therapist-less and having to find another which just became too hard and convoluted - they are hard to come by and I refuse to make him miss school for it. Plus lacrosse season began and that was enough time during the week and weekends to not allow much else, and it was providing quite a bit of activity and movement. We also kind of cooled on going back to see Dr. Apkon. The last few visits have been the same. She does a full physical check-up on him, has him run up and down the halls, asks him a bunch of questions, we discuss medication and changing anything and then she says to stretch his heel cords more. Well we have been stretching his heel cords since he was 2. He plays lacrosse, walks home from school 4 days a week, rides his bike and other active things - I don't think his heel cords are the issue. We deeply respect Dr. Apkon, but even she has said she has exhausted her bag of tricks as far as medications and therapies go. There is always botox to loosen stiff and toned areas, but otherwise I am not feeling like there is much more to go. We started looking into alternative therapies for his face and hands. Alistair is now doing acupuncture and has had 2 appointments. We have 4 more to go before we make any determinations. In addition, his PT with Brian has shifted to focus on his head and neck. Brian is doing some strengthening exercises with his neck and jaw as well as some deep tissue massage on his cheeks and chin. He has only done it once so far, Alistair said it kind of hurt but he didn't say anything because he knew it would be more intense! :) We have another appointment with Dr. Apkon in October once we have done these other therapies to see what, if any, differences there are.
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| Snow shoeing Icicle Creek area outside of Leavenworth with the O'Briens |
Cardiac-wise Alistair is doing great! The blood pressure medication is doing its job to help his heart recover. Dr. Lewin continues to be pleased with how Alistair is doing and and recovering. While running errands a few months ago, I ran into a woman who had a fairly fresh looking cardiac scar. In commented on it only because I was going to tell her I admired her for not hiding it. She was wearing a v-neck shirt and the top inch of it showed. We got talking about her surgery and I mentioned my son had surgery. I asked her what her heart condition was and she said Ebstein's Anomaly. Turns out she also had the Cone Procedure at Mayo Clinic with Dr. Dearani only 7 months after Alistair. That was so trippy. Alistair was hanging in the car with Seth, so I texted Seth and had them come in to meet her. It was really cool and she was tickled to meet someone else with the same condition...only 3% of people with heart conditions have Ebstein's.
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| The kid's first overnight hike to Baker Lake with Levi and his Dad last summer |
There is always something to complain about, but overall things are great. Alistair continues to grow and mature. He grew 3 inches over the last year and is just barely 5 feet tall now. He is one year away from being an official teenager. So far he continues to be a sweet, considerate, kind kid with a big heart.
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| Virgin Bloody Mary - Alistair is the king of almost being an adult!! |
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