Wednesday, October 21, 2009

I really need to get a new lullaby CD for Tomas. I play it on repeat while he is napping and until the rest of the house is asleep at night so he can have some "white noise". It is not that it gets on my nerves or anything it is that the song "You are my Sunshine" is actually quite sad. Sometimes it can be very difficult to keep the fear of the future at bay and that song does definitely not help. Most times I don't even notice the scars, but there are times when I am playing with him and kissing his belly and the past just comes rushing in, and other times during the most ordinary tasks the word leukemia just explodes in my brain and it is all I can do to keep it together. He is desatting quite a bit when he is asleep and had two large desats while he was awake today so I'll see what pulmonology says tomorrow. Can you have apnea while you're awake?

I saw his new ENT today and got mixed news. His laryngomalacia is resolving and only considered mild, but during the scope the Dr. found significant swelling of the larynx, indicative of severe reflux. As you all well know Tomas is not supposed to be refluxing anymore. First, because of the nissen and second, when the nissen didn't hold we switched to the g-j. So, it looks like he may be refluxing his secretions. If this turns out to be the case and is severe enough it could mean a trach.

I am also closely monitoring his umbilical hernia because it looks like it is closing. That is great as long as it closes with all of his bowel on the inside of the abdominal wall. There is a small part that I can't push back in so I'll call the surgeon in the morning to see what he thinks.

He had his 9 month check up last week and the Dr. stressed me out by asking if he could pull up to a standing position yet. Umm, no. Then he asked if he was standing at all. Umm, nooo. Well how about sitting up? Ummm, nooo - 2 major surgeries, 1 minor, 3 procedures requiring general anesthesia, 2 intubations, 2 near coding bagging episodes. No he can't sit up yet. But Tomas' PT put me back at ease on Tues. and said he is making great progress (which I had also thought and was quite happy with until the Dr. visit!!!). Talk about a disconnect between patient and doctor.

Despite all the unresolved issues he really does look great these days. He finally got some teeth! the first one came on the 16th and the second 4 days later. That means my fingers take a beating during his oral exercises. They are so sharp when they first come in! I took the kids to a pumpkin patch the other day and he loved it. They all had a great time and he really enjoyed being outside. I'll ease up a little when he gets his RSV shot and try not to worry about germs so much.
It is funny how I notice so much more with him than I did with the girls. Do any of you remember when your baby was first able to reach up and pull a hat of of his head? I was actually cheering him on yesterday. I will regret that now that winter is coming, but it was so cool to watch him connect the thought process with his muscle control. It is the moments like that that make everything else ok. God is so good beyond anything I can comprehend. Really, think about it, that small tiny moments of pure joy in the middle of folding socks (no laundry fairy as of yet!)can erase so much pain. Not only that, but you go back for more, and are willing to take the bad to get to the good. Simply amazing. Simply God.

1 comment:

  1. Have you tried any of Paul Cardall's CD's? They are great. His blog: