It's been a while since I've posted anything on T, so I thought it was probably becoming overdue. First of all, he's still the same wonderful boy he's always been. He's kind, gentle and generally happy. With that being said, he's become more of a toddler, has started having times of being very fussy, is into everything, is constantly looking for mischief and now intentionally does "bad" things for attention. The good news is that I believe a formal diagnosis for this would be that he's 3 years old.
Since Torsten's positive diagnosis for Pallister Killian Syndrome, things have started to make sense. So many of the questions we have had since he was born, now have at least partial answers. We've found a wonderful community of parents of PKS kids, who many times are the only other people in this world who understand what we're going through at any given moment. We all communicate through Facebook, which has also given a previously frivolous social media outlet new meaning to us. This group of people collectively hold more knowledge on our children's condition than most/all doctors in this world combined. There are no words for how amazing these people are and how much positive support we're all able to offer each other.
A few months back, we had the appointment at Children's to have T's ticker checked out. He sat through a very lengthy ECG like a perfect little gentleman. The test showed absolutely nothing wrong with his sweet heart. They said that there was only a very small area of the heart that they were not able to view (~3%, I believe), but that given the health of the rest of the organ, he looked great. We then met with his new neurologist two days ago at Cook's, and although she reiterated that he has an 80% chance of developing seizure activity, there is still a 20% chance that he won't. We're hopeful for the 20%, and so far, things are looking good there as well.
We're attempting to get Torsten into school as soon as possible. However, the interviews, waiting lists, applications, tuition and fees, etc. are an absolutely giant hurdle. The first school I called told me that I was over 3 years behind, since most special needs parents know that their children will require special schooling and have their kids on waiting lists from birth, or even before. According to her, we were "extremely late to the game". The search for the right school has been frustrating at best, but we're still looking. In the meantime, Torsten has 6 therapy appointments every week and is still progressing well. He is almost exclusively walking, and only crawls occasionally. He will be getting fitted into his new braces as well as a pair of hip trainers next week, so we'll see if that will help him walk more steadily. In a recent review of his original OT goals from 6 months ago, he had exceeded all of them. And although ST is slower, he's starting to make some sounds that we believe he associates with something he wants. He will get there in his own time, as he always has.
On a recent family vacation, we had Dane and Torsten sleeping in the same room for 10 days. They did so great, that we're planning to put them in the same room at home as soon as our THIRD crib is delivered. The boys are so fun to watch. They play together, mimic each other and never let the other stray far. Seeing them together has brought us more joy than we ever imagined it could. However, knowing that we're bringing home a baby girl in a few months definitely makes me a little nervous. These boys are constantly tumbling all over each other and seem to have little regard for safety or the pain inflicted on each other or us if we find ourselves in their path. I can only guess that she'll be a tough little girl.
Things are definitely becoming more challenging around this house, but overall, we're doing great. Having the boys has been and continues to be our greatest joy. We're excited about the growth of the distillery and our upcoming move into a new facility, and are looking at a potential personal move to Lewisville as well, hopefully within walking distance to work. This pregnancy has been a little tumultuous, but with exactly 14 weeks to go, things are cruising right along and all doctors and specialists say that she is doing great. Unless she has other plans, her arrival is planned for November 20th.
We hope you're all having a great summer!
Love,
Ryan, Tasha, Torsten & Dane
Since Torsten's positive diagnosis for Pallister Killian Syndrome, things have started to make sense. So many of the questions we have had since he was born, now have at least partial answers. We've found a wonderful community of parents of PKS kids, who many times are the only other people in this world who understand what we're going through at any given moment. We all communicate through Facebook, which has also given a previously frivolous social media outlet new meaning to us. This group of people collectively hold more knowledge on our children's condition than most/all doctors in this world combined. There are no words for how amazing these people are and how much positive support we're all able to offer each other.
A few months back, we had the appointment at Children's to have T's ticker checked out. He sat through a very lengthy ECG like a perfect little gentleman. The test showed absolutely nothing wrong with his sweet heart. They said that there was only a very small area of the heart that they were not able to view (~3%, I believe), but that given the health of the rest of the organ, he looked great. We then met with his new neurologist two days ago at Cook's, and although she reiterated that he has an 80% chance of developing seizure activity, there is still a 20% chance that he won't. We're hopeful for the 20%, and so far, things are looking good there as well.
We're attempting to get Torsten into school as soon as possible. However, the interviews, waiting lists, applications, tuition and fees, etc. are an absolutely giant hurdle. The first school I called told me that I was over 3 years behind, since most special needs parents know that their children will require special schooling and have their kids on waiting lists from birth, or even before. According to her, we were "extremely late to the game". The search for the right school has been frustrating at best, but we're still looking. In the meantime, Torsten has 6 therapy appointments every week and is still progressing well. He is almost exclusively walking, and only crawls occasionally. He will be getting fitted into his new braces as well as a pair of hip trainers next week, so we'll see if that will help him walk more steadily. In a recent review of his original OT goals from 6 months ago, he had exceeded all of them. And although ST is slower, he's starting to make some sounds that we believe he associates with something he wants. He will get there in his own time, as he always has.
On a recent family vacation, we had Dane and Torsten sleeping in the same room for 10 days. They did so great, that we're planning to put them in the same room at home as soon as our THIRD crib is delivered. The boys are so fun to watch. They play together, mimic each other and never let the other stray far. Seeing them together has brought us more joy than we ever imagined it could. However, knowing that we're bringing home a baby girl in a few months definitely makes me a little nervous. These boys are constantly tumbling all over each other and seem to have little regard for safety or the pain inflicted on each other or us if we find ourselves in their path. I can only guess that she'll be a tough little girl.
Things are definitely becoming more challenging around this house, but overall, we're doing great. Having the boys has been and continues to be our greatest joy. We're excited about the growth of the distillery and our upcoming move into a new facility, and are looking at a potential personal move to Lewisville as well, hopefully within walking distance to work. This pregnancy has been a little tumultuous, but with exactly 14 weeks to go, things are cruising right along and all doctors and specialists say that she is doing great. Unless she has other plans, her arrival is planned for November 20th.
We hope you're all having a great summer!
Love,
Ryan, Tasha, Torsten & Dane
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