The Last Few Days

Sorry I have not gotten around to posting the specific medical details....once we got home from Houston we resumed our usual business!! I have to remind myself to breathe some days, I swear we are so busy. My two cousins Morgan and Grace are staying at my grandparents' house this week, so we have taking every chance to see them. The other day we all watched Billy the Exterminator (on TV) try to catch a raccoon....well that's something I never thought I would watch! We also ate with the Townsends Wednesday night for Justin's birthday (he is 25....we are all getting so old!!). Yesterday I had two visits with "old" friends. I met my friend Meredith in college, and we have stayed in touch ever since. Talking to her is like getting a breath of fresh air...she is funny and so blunt...she has been teaching in Memphis public schools for 4 years, so she always has some interesting stories to share! Then I ate dinner with three friends....Lacy, Melissa, and Lauren....it is so weird, I have to say! We all were best friends in middle school, then lost touch over various times in our lives, and now we all have at least one child, all around the same age, and we all needed a night out. It felt so natural to change topics, bringing up Tucker and different facets of his diagnosis, right along with every other topic under the sun. Tucker's issues and delays are often the "elephant in the room." People don't know how to approach the subject until I do, and I often don't or can't approach it because I don't want to kill the conversation or cry at the dinner table.....so last night was perfect for me in so many ways....we even made jokes about Tucker, because, well, he is pretty funny!! On Wednesday Tucker's new teacher Mrs. Amy emailed me, saying that it was okay for us to drop by the new classroom any afternoon this week. Well Wednesday was the only good day for us, so we went over. Tucker was SO excited to go to "big school." He walked in like he had been there for years....of course holding his Daddy's hand gives him confidence:) The teacher let him explore everything in the classroom while Chris and I talked about Tucker and his new diagnosis, along with his "old" problems, like eating and potty training, as well as his complete lack of an attention span. I have to say, Mrs. Amy already knew everything we told her! Mrs. Mary must have given her some good notes on Tucker! My cousin Amanda teaches at the school, and she had even stopped by and told her about the mito diagnosis, although I explained it in more detail. It really won't affect the way Mrs. Amy teaches Tucker, but I do want her to watch for any symptoms of overtiredness. I also have to file some paperwork with the school nurse, but that's about it unless his symptoms show up this year....praying that they don't!! Tucker spoke several three word sentences to Mrs. Amy, but she didn't understand any of them!! We had to translate, but I figure after a few weeks she will understand him, or maybe he will start talking more clearly! I love the way the class will be set up, because there are supposed to be 6 kids with special needs, and 6 typical kids....they structure the day like a "typical" preschool, and take lots of time and extra effort with the special needs kids. So I think this will really push Tucker, which I love. Also we hope his friend Wes gets to be in his class, because Tucker likes to follow Wes around and do what he does....except eat!! Today we are getting ready to go back to Houston. I mentioned in my last blog that the lab had a mess-up, so we are bringing Tucker back to give more blood....fun fun! I wanted to get all the details of the last few days out, because they are all important. But as for the emotions of the last few days....they have been hard to handle. One of the hardest things I heard from the doctor was that Tucker is going to get worse, and we don't know how. The other hard thing she said was that most of his problems can not be explained by mito, but by his prematurity....such as his sensory issues and refusal to eat. For those who don't know, since I may act like it doesn't bother me, these feeding issues are my true nemesis!! Eating factors into almost every routine and every part of the day, so when your kid doesn't like to eat, it affects every part of your life. I was SO hoping that his feeding issues were a "mito" thing, that way I could at least have something to blame! That might sound horrible, but Tucker has had such great therapists and feeding plans for years, with way too slow progress.... So to hear that so much of what Tucker has been through has been due to prematurity, over 4 years later....and now we have so much ahead of us due to mito....it really makes me want to scream!!! Like "this is not fair!!!! we got hit from the beginning, got a little better, only to be hit with all of the neurologic issues?" With prematurity, as bad as it was, we always had the hope that each day we were moving in a positive direction...every day his lungs got bigger and stronger....every day we got closer to getting the trach out.....we have no experience going the other way... Today I am just thankful for our support system, there are so many people praying for us and Tucker, and that just has to be enough for us right now.