L had a visit to Seattle Children's Hospital and a swallow study this week. His swallow study showed that he is likely aspirating when drinking fluids. Aspirating is when the drink or food goes down the larynx instead of the esophagus where it is supposed to go. So the liquids can then get into your lungs. They didn't catch a full aspiration on x-ray, but they did catch his drink going into the larynx and then him pushing it back out. She said that it was clear that he was aspirating and that we need to find a way to make drinking safe for him, because aspirating is dangerous.
|Waiting at Seattle Children's Hospital|
His visit to Children's was a "finally" moment. First, he saw the sleep clinic. She said that he is obviously struggling to breathe while sleeping. She said that it is urgent for him to get a sleep study. He has one scheduled in March. The primary care doctor that he had after leaving the NICU told me when I brought up his difficulty breathing that it can't happen when sitting up. I assured him that I was watching it happen, but he insisted. He has a different doctor now. We finally brought in a video and now everyone says "Oh my gosh, we need to do something about that right away." So as parents, if you ever feel something is not right, don't let it go. These issues could have been dealt with years ago. He never even passed his breathing tests when leaving the NICU, which I was assured several times was okay. This week there was another time that he stopped breathing so long that I had to get him out of his car seat and help him to start breathing. He also saw the ENT, and one of his ear tubes is falling out. That kind of stinks, because new ones means another surgery. He said his tonsils look good and tiny, so that is not what is interfering with his breathing.
|Head supports make squishy cheeks|
We also got those pads that are supposed to support newborns' heads when in the car seat to try to open his airway more in the car seat. It looks pretty funny on him since he is not newborn size.
Unfortunately, everyday things have been getting a little more tough. The other day, my husband said 'so this is it huh? This is when you have too much limitations in daily life.' (poorly paraphrased)
|We've raised not only a tree hugger, but a tree kisser|
Now as far as our house, we have decided to stay in our rental for another year. We will be able to take our time to find the right piece of land for us and to finish the micro house nicely instead of in a rush. We are going to try to find land in Skagit County. We were going to move south toward family, but my medical team and Layne's medical team are both here, and it doesn't make sense for us to move away from them. So house progress may slow down a little, but we will still finish it soon-ish. We did, however, get a truck that can pull the house! It is a 3/4 ton Suburban.