Waiting...

Not too much has been going on around here...at least not medically. We have been really taking things easy and not doing too much. This time of year is always pretty good for us. It might not make sense to most people, but other preemie moms "get" it...Tucker spent his first summer in the NICU, and his due date was around the end of August. Every year the summer is kind of hard on me, especially the end of August. Sometimes I will forget just why it's so hard, then the first few weeks of September comes around and it's like I come out of a sad fog. Our situation doesn't actually change, and the weird thing is-Tucker didn't come home in September, so you'd think I would get even more sad....but that's just the way it has been for the last 4 years. Every autumn my feelings perk up, even though these months are never good for us. Tucker spent his first fall months in the NICU. For his second year, he was about 14 months old when we found out his brain had stopped growing. We were referred to the neurosurgeon and had CT scans of his brain. The neurosugeon had no explanation, but he thought we would wait and see. Two years later this wait and see showed us that Tucker's brain had grew barely a centimeter in two years; in October of 2009 Tucker saw a team of 8 specialists at the craniofacial team. We found that Tucker's skull was fused shut at 3 of the 5 possible openings; most kids' skulls don't close until years later. His brain was not pushing up against his skull, so this showed that we had two problems-his brain is not growing and his skull is fused. The doctors had no explanation for this, and they still don't; however this showed that his problem was very likely genetic, even if we couldn't find the exact genetic problem yet. The fall of 2008 is when we realized that Tucker was likely having seizures (until a 24 hour EEG showed that he wasn't) and when Tucker got the autism diagnosis. This summer we got his mito diagnosis, so maybe our usual October surprise came a few months early?? We are hoping at least! So for now, as usual, we are trying to enjoy the present until the next big issue comes up. Chris and I are moving forward, trying to figure out the next steps for our family to take. We have kind of put our lives on hold for awhile, both professionally (me) and personally, and we have decided to start moving on. We have been hyper-focused on Tucker for years, and his good transition to school is giving us some time to think about other things. His mito dr said to carry on "as normal"; after about 7 weeks of taking in his diagnosis, we are trying to decide what normal really means for us! We will keep everyone updated as things get decided:) Tucker has been doing pretty well at school; he didn't hit as much on Friday, so we count that as a victory! He is barely ever hitting at home, which is a huge change from last week. Chris spent Saturday night at the new hunting camp, so Tucker and I spent Saturday afternoon and night cleaning house (me) and playing toys (Tucker). Tucker has really taken much more interest in his toys since starting school and he does much more with them. He definitely still has no imaginative play (unless he is imagining that he is the boss of the world!), but he at least has a much longer attention span and he spends quite a while playing with his toys instead of crying by my feet. While we have these medical breaks, I have a tendency to avoid my blog. I don't feel like there is much to write about, and that our "regular" life is pretty boring. But then inevitably, another medical issue comes up (and it always does) and I realize that I wish I had wrote more entries about everyday life. So I will write about Tucker's new hobby, playing Tball:) Tucker's first game was hilarious and pretty chaotic. This week's game was more organized. There were covers on the dugouts for shade and Tucker stayed in the dugout much longer. There were also volunteers guarding every gate so the kids (mainly Tucker) wouldn't escape out to the stands. Tucker is really getting the point of the game, but he does not like to wait...the waiting for his turn to bat, the waiting for the other batters to hit the ball so he can run to the next base, waiting out in the field for it to be his turn to run back to the dugout. So there is a lot of chasing him back into his spot. For this game the director Betsy was there, and she helped Tucker one-on-one for awhile so that Chris and I could have a break! This is a picture of Betsy telling Tucker what base to run to next. This is a picture of Betsy and Tucker running to second base.

This is Tucker getting ready to bat...his batting habits are hilarious!!

He takes about 5 minutes to set up the tee and the ball exactly how he likes it. The coaches pulled the tall tee out so that it would be short, and Tucker did NOT like that. He picked up the extra piece and put it on, then he put the ball on, then he was ready!

At one point he ran from the field to help a batter on the other team set up her tee. It delayed the game by about 5 minutes! Here is a pic of the 3 of us with our Hurricane team tshirts on. I love the pic, but I need to crop the trash can out of it:)

Chris bought a new camera last weekend. He wants to use it to take pics of deer, but I think I will send the older camera with him to the camp! The other day Chris took some pics of Tucker on his swingset to get used to the camera. It is great, it takes so many shots per second so you can really get lots of pics when Tucker's in motion...which is almost always! For Tucker's 3rd birthday both Chris's and my parents got Tucker a big playset. That was by far the best idea, and Tucker loves it. Here is a pic of him with me on the big glider swing.

And a picture of him in his "baby" swing as I call it. He likes to start out in this swing so he can go super high, then we make him move to the other swings to work out his legs.

He loves to swing! We are hoping for many more boring weeks ahead, thanks for checking in on us:)