Monday, April 29, 2013
On Sunday, we attended the annual Children's solid organ transplant picnic. We missed last year because Keegan was inpatient at the time. Three years ago, I went into labor with a little spunky miss during the picnic. This year was much calmer, and we all had a lovely time. Smaller crowd this year, and only two of our heart friends were there, little Brynn (in blue at left of front row, waiting on her second heart) and baby MacKenzie (in her big sister Grace's arms on the right in matching dresses). This is the only picture I was able to get due to a camera issue, but this group of amazing miracles is enough of a post all on it's own. Don't you think?
Tuesday, April 23, 2013
We have a follow-up appointment with the neurologist in two weeks. We're anticipating that will be another good report with stable news. His teacher recently did some informal standardized testing in order to prepare for a meeting with the school district to plan for kindergarten (yikes!). Keegan placed in the 32-40 month age range in social/emotional and communication, and on the low side of average for his real age range in cognitive skills! That means that while he has difficulty expressing himself and engaging with others or attending to self-help needs, he understands things on a level consistent with other five year-olds. This is a full year better than where he placed in January of 2012. He will have a formal evaluation by the neuropsychologist again in July to get more solid numbers, but we couldn't be more thrilled. Keegan has worked hard for that progress, and it shows. As for kindergarten, the medical team, the school, and Gray and I all agree that he needs to be home-bound for at least one more year due to his immune suppression. He would have been in a resource room alone for all core subjects anyway, so keeping him home makes even more sense. Next year, he will continue with his current special education teacher (yay!), but he will have 4 hours of in-home teaching, instead of just 2 hours. Hopefully, we will learn more about his genetic immune deficiency and get him off steroids during the coming year, which will help him feel better, learn better, and have a better chance of leaving home for school by first grade.
Then, the TPN was stretched from 10 hours to 12 hours. We completely maxed out his oral dose of supplemental magnesium. Finally, we gave him a few doses of IV magnesium here and there. We checked his kidney function, but it didn't seem he was wasting an excess amount via his urine. When nothing else worked, the team decided to bring him into the hospital for IV mag every Tuesday and Thursday. After the first week, his levels were still low, so know we're increasing his dose...again. Our goal is to get him at least close to normal. So, it looks like this will be our new routine for a few months. If it works long term and he tolerates the infusions well, we will eventually be allowed to administer them at home.
Of course all this fluid has him a little on the puffy side, but that's a small price to pay for now. Regular labs will be drawn on Friday, so we'll see if all the work is even helping him at all. He has been sick with a cold that his sister brought home. It's been a little hard to tell how he's feeling other than that, but the snot seems to be subsiding now. We are hopeful for a break for our little buddy soon.
Saturday, April 20, 2013
Monday, April 15, 2013
I am struggling to sort out all my feelings, let alone put them in print at the moment. They are coming from every aspect of my life. As a runner. As a mom. As an American. As someone who loves the city of Boston and all the hope it has provided our family.
My mind constantly flashes back to four years ago today. Our apartment at the time was on the corner of Mass Ave and Boylston. The finish line of the Boston Marathon less than a quarter mile down the street. Gray, Keegan, and I literally stood right on that corner under the country flags to watch the elites come in on Patriots' Day 2009. It could have been us.
Tuesday, April 9, 2013
In the meantime, I had to share this gem with you. Keegan following along with a Mickey Mouse-ker-size episode while waiting for his TPN to finish on Saturday morning (his IV pole is behind him still). Turn it up and watch closely to see him play the Simon Says like game. Not only is it cute, but it's amazing how closely he is following instructions, something that is so very, very difficult to do in real life. I love it.