Our Day In Pittsburgh

We went to Pittsburgh this morning for Micah's 1 year checkup with Dr. Schneider and a development evaluation as part of the BARC study. While micah was very socially engaged and outgoing, he didn't do too well with the tests. The cognitive test showed that he was slightly delayed because his motor skills are significantly delayed. This wasn't entirely unexpected but it did sting a bit to get it in writing. The testing took about 40 minutes. They used blocks and toys but he isn't to the point where he can stack things or drop them into the cup. He got a huge kick out of the sound of the blocks falling into the cup. I've never heard him laugh so hard over something like that. It was too cute. After the testing, we went to lunch at Primanti Brothers. It was good but I don't remember the coleslaw being so peppery last time. After lunch, we walked back to the hospital to get ready for the doctor's appointment & interview portion of the appointment. The nurses started with length, weight, head circumference, bp, spo2, temp and attempting to collect a urine sample. He weighs 17lb 14oz, is 29.5 inches long and his head circumference is 44.3 cm. I am a little concerned about the fact that he has only gained about 6 oz in the past 3 months. I wish I knew hy he isn't gaining weight. He did grow 3.5 inches since his last visit to Pittsburgh though. that is pretty cool. Before we were all done with the initial measurements, Dr. Schneider came in and gave Micah a physical exam. Everything seemed to be in good order. I had a bunch of questions for the doctor. I asked about his previous blood work results (they were normal), the hemangioma in his liver (they usually calcify but he said he would order an ultrasound to check on it. It was only about 1/2 a centimeter to begin with), the possibility of liver issues down the line (he said probably not) and I also asked about the bone survery and how his time of no growth might affect him in the future (he said it would probably have no major effect but we can't be sure). I also asked for a reccommendation for a pediatric urologist so we can Micah circumcised. He gave me the name of a doctor but I can't think of it right now - it's on the CHP website. I also asked about whether any other information was available about the virus that could have caused all these problems since they did find parvovirus antibodies in his blood but it turned out that those were not acute and that the presence of the antibodies were due to them being passed from me. Dr. Schneider called what Micah had "neonatal hepatitis" which is just a generic name for some sort of infection that affected his liver and caused all this stuff. After answering Bev's questions, they took blood for labs and also for the study. Steve held him this time and he did pretty good. He cried at first, then calmed down as the nurses and Steve sang "Jeremiah was a Bullfrog" to him. He started crying again after they took the needle out of his arm and held pressure on it. As long as his liver enzymes come back normal again, he is released from Dr. Schneider's care and from the BARC study. Bev was upset about us being released from the study - she told the doctor that he needed to keep us in the study since she really like us. I'll kind of miss it too.

After we finished, stopped in the NICU for a visit. Since it will be the last time we will be going to the hospital, I wanted to stop to see if there were any nurses that had Micah. This time there were three there! Usually, they are all at lunch when we stop in. This time Wilma, Tracy & Sarah were there. They spent some time chatting and playing with Micah. They couldn't believe he was already a year old. Sarah even remembered that Micah was in bed 9. It was nice to chat with them. It brought back a lot of memories. Kind of bittersweet for obvious reasons but also because in 38 days, that building will be closed and they will be in the new building. My 1st 3 weeks with my little boy were there and I will never be going back there. I also spent 3 days there with Laural. It's just a little sad.

After leaving the hospital, we went to Trader Joe's and I got some lovely organic groceries. It was kind of a neat place. I like it. We will have to make a point of going there on a regular basis. Then we headed home. Not long after we got on the road, Laural had to pee - really bad. So we stopped at Home Depot off I-279. By the time we got home, it was 5:30PM. I tried to get Steve to call off work since he hardly slept yesterday either. He refused. I wish he would have since I am feeling rather sad and a little depressed about the outcome of some of the tests. It would have been nice to have somebody in the house for a little support.

Overall, the appointments were good and the day was good. I wish that Micah was a little further along developmentally, but I am certain he will be fine. While we were at the hospital, I saw several kids with a variety of illnesses and issues and I couldn't help but think how blessed we are. Things could have been much worse for Micah. At one point we were talking about the possibility of a liver transplant and possible death before the age of five. Now, he is being released from the study and is doing fine. Gos is so good. As are all the people who have been praying for him. He truly is our little miracle.

A Birthday Party

I am taking a little flack from some relatives about the theme of Micah's 1st birthday party. I guess people figure things should be all sweet and cuddly for a baby's birthday. I initially planned a more baby-ish theme but after thinking about it, I changed the theme from Hugs & Stitches to Party Like A Rock Star. I don't have a problem with the baby type themes. I just thought that since he won't really have much of a clue what is going on, I would have the party for the party goers. I am going to dress him up as a baby rock star, complete with tatoos! LOL I think it will be fun and should be fun for everyone involved. Too heck with the naysayers!

I just remembered the name of the woman I wrote about in my holocaust post. Her name was Lena.

My baby, in glasses.

This is going to sound a little dumb, but it just breaks my heart that Laural has to wear glasses now. It's been a few weeks now and I am getting used to seeing her little face with frames, but when I look at pictures of her before the glasses, I miss seeing her plain little face. She looks absolutely adorable in her glasses. I don't know. Maybe part of me feels like something I did caused her problems - maybe my genes weren't good enough or something. I know she needs them. I wish she didn't. I knew that at some point she would need glasses anyhow. Steve and I are both near-sighted, so it's likely that our kids will be too. But this is different. I don't know if I could ever explain the disappointment I have over this. Not in my daughter. I could never be disappointed with her. I think most of the time, the disappointment is in myself. When something like this happens, it makes me feel a little like a failure. I don't know if I could tell anyone this. I would just get the usual "it's not your fault" and "nothing you could have done would have prevented it" type statements, but knowing that in my head doesn't make it feel that way in my heart. At least I've got it out of me in some way.

In other news, we are preparing for a first birthday! Micah will be a year old in a little over a week! Where did a year go already? More on that later.