Things have been all good here since our last update. Kyler is still healing from his surgery but his bandages have come off and his incision sites are looking good. The one that is still healing up the most is his belly button. It was looking pretty rough from what I am guess was some scar tissue since every surgery has cut open his belly button and gone back through that way. They aren't bothering Kyler at all and he is all over the place being crazy active! He has started putting two signs together and is saying "more food"! I am super excited about this but he is now doing it ALL DAY LONG, starting at .00002 seconds from him putting a bite in his mouth and continuing up until the next scheduled feeding time. I am thinking the all day signing is partly due to him figuring out that we know what that means and so does he, and it is fun to be able to communicate. I also think that he may be wanting something to chew on to sooth some incoming teeth. Either way, I am glad he is signing and understanding how to ask for food!
I started getting back into my classroom in the last week and that left Kyler a little upset. He has gotten used to having mom home all summer and on the first day I went and worked in my classroom for a whole day, he ended up crawling to the garage door and crying three or four times. He has gotten better but these last few days, he has had Jaida and Gunner here with him so he may struggle some more when they start back to school as well. In the past week Kyler got a hair cut and did the overnight oxygen study. He looks so grown up with his hair trimmed up! I was hopeful when we started the overnight oxygen study. When I put it on him it started reading 98% right away and that was promising but I put him to bed and waited to see. After a couple hours, I went in to check and it was still reading 98% while he was fast asleep! I went to bed hoping it stayed that way! We got it turned in and then had to wait for the results to be sent to his pulmonologist in KC for analysis. I estimated it would be about a week before we heard anything. A day or two later we ended up discontinuing his feeding therapy sessions and I requested copies of his files. We then took another trip out to the lake. It was fun being on the lake and getting some sun! Kyler really enjoyed the boat ride! As we cruised around and he saw Gunner whooping and hollering, he started copying some of the sounds. It was really funny when we headed toward the bridge and went under it. The whole way leading up to the bridge in the no wake zone and back under the bridge he was just yelling "BA! BA! BA!" over and over again with a hand raised in the air. He continued to yell until we went back under the bridge and out on more open water. I don't know what he was trying to say but he was sure ecstatic! Since being home from the lake Kyler is showing off some new skills! He has figured out how to crawl in and out of his mini inflatable pool that I bought for him to have in the living room, he is cruising along furniture and even starting to stand by only holding on with one hand! He also went up the stairs for the nurse without complaining today! Today we got the results of the overnight oxygen study and it was good! It said that 99.6% of the time his oxygen was 90% or greater and that the lowest he dipped was 79 during a 4 minute long desaturation episode in which most of the time it was in the mid 80s. It said that those numbers with the change in his heart rate at that time meant the lower numbers were consistent with being caused by movement. This means he wasn't really having lower oxygen, the sensor just wasn't ready great because of him moving around. This is great news, because we get to take him off oxygen at night! He is now off oxygen all the time!! We will be keeping it in the house for when he gets sick and to make it through the winter(aka cold and flu) season since we know that he does require some support when he is ill. We are super excited for the progress he has made and are so happy that there is one less thing for him to have to deal with for now! I am excited because it means that I may be able to clean up my living room and get some of his stuff out of the area since it won't be needed as much now! Exciting things for us! I officially report to work tomorrow and the kids start school next week so we will be getting back on a more routine and regular schedule again. At this point we will mainly be doing life until September when we return to KC for feeding clinic and surgery check in!
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Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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May 2020
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