Well it has been a while since the last update and I somehow completely missed doing an update on his 4th birthday! Oops! So a quick recap to get up to speed and then I'll share about his cardiology update from today's appointment.
Kyler started preschool this year and is going 3 days a week. In addition to preschool he is also continuing in Language Lab 2 days a week for his speech services. He absolutely loves school, his teachers, being with friends, and getting to do the same things his sister and brother get to do. While it has been so exciting for him to get to go to preschool and be around other kids his age more, it also has brought its own set of challenges. He has had a rough year of building his immune system. Since he has never attended daycare or preschool, his germ exposure has mainly come from family. This year he has caught all sorts of "bugs" and is getting hit one after the other with all of the normal things kids catch over their first couple of years that he is catching all in one year. Thankfully he, and the rest of our family, have avoided catching COVID(fingers crossed it stays that way). In November he ended up have surgery to remove his tonsils, adenoids, and ear tubes. He handled the surgery well but had to stay out from school and activities for two weeks. Unfortunately, he caught one bug, and then another and missed a month of school. That wasn't very fun. He felt pretty well but kept running fevers so he couldn't go to school until he was fever free for 24 hours before school. He ended up on an antibiotic after running fevers for 2 weeks, and that took care of it. We were all very happy that he was able to get back to school and his friends. Now fast forward to today's appointment. Today was a regularly scheduled check up on his heart. He has had to have one every year due to the CDH and ECMO. This time we had scheduled the appointment with Children's at the Kansas City Campus thinking this would be his last planned check up with them. We had hoped that we could take some time to stop in and see some of the amazing people who cared for me and him before and after birth. We get to his appointment and checked in. Kyler was pretty impressed with the cool decorations he saw in the hallways. First up was checking his weight and height. Our big guy still isn't so big, weighing in at 28 pounds 11 oz WITH clothes on. He is growing in height though and currently standing at 3 foot 3 inches tall. Then next part was the EKG. When the nurse started putting the electrode stickers on him, he started crying a bit and whining. That was quite a surprise for me. He has done so incredibly well dealing with all of the procedures he's had in the past(including x-rays recently) that I was really caught off guard that this was freaking him out. The stickers were a little cold and sent goosebumps all over his body but with some hand holding, kisses, and a bit of distraction by letting him tell the nurse the color of the wire attachments, he ended up doing okay with it. He got to see what he looked like with them on and wanted me to take the stickers off and then he was happy again. After a short wait in which he got to play with the wall toy and "drive" the car, we were taken to a seperate room for the Echo. Again he got kind of worried and fussed a little but he got comfortable and was able to do well for the whole time. The whole procedure he went between watching the cartoon on the TV, doing 100 questions about what we were doing, and watching his own heart on the monitor. He thought it was neat to see and kept asking if it was "beeping". He also wondered why it wasn't in color, like I said 100 questions! The tech turned the sound up and Kyler got to hear his heartbeat from the machine but he didn't like that as much, he said it was loud! After the tech got around 40 or some images of his heart, we were done and headed back to the first room to wait on the doctor. He came in a said that everything was normal and that his next follow up would be in 2-3 years. It was really hard to hear/understand what he was saying but at one point he said something about dilation of the aorta and genetic anomaly. That made me stop him and get some clarification. I asked if there was any dilation of Kyler's aorta and he said not but it was something they were watching with his genetic anomaly. I was surprised by this as I don't recall hearing about that being a part of his genetic anomaly. After we left I got to thinking about that more and I wonder if they have learned more about that anomaly in the time since it was found(almost 5 years now). A friend also said that maybe they are watching for that as part of the study they were doing in which Kyler is one of the case studies for that anomaly. Either way, we have some research to to and see if there is more information available that we need to be aware of! We got our paperwork and headed out of the cardiology clinic. Like I mentioned before, when we had scheduled the appointment for there, we had hoped to get to see some of the people who took care of us. We knew one of the people we had wanted to see wouldn't be there but we ventured toward the Fetal Health area to see if anyone else might be there for us to say hi to. I got confused pretty quickly because the sign for Fetal Health was now on the 1st floor and not on the 3rd floor. I was doubting whether we could even get to the right place when we just happened to run into one of the people we had hoped to see. It was completely by chance and was meant to be. She brought us in the side door to visit with her and she couldn't believe how big Kyler was. She also shared that it was super lucky we ran into her because due to the staff shortages in hospitals everywhere, she hasn't been at that campus for 2 weeks and had been out for a while herself. We asked about a couple of the others and they were out that day too so we are hoping we can schedule a time later once all of the craziness has slowed down(hopefully gone away) where we can make another visit just to see all of those amazing people! Next stop was dropping off all of the pop tabs that people have collected for us. There had been some changes at the Ronald McDonald houses as well. There is now a playground for the families/siblings to use right between the three houses. We dropped off the tabs and headed home. After our visit today, I am praying even more that all of this crazy pandemic goes away or at least becomes much more manageable for everyone. I am so thankful that Kyler was born way before this pandemic hit. Hearing about the staffing issues, bed availability, and the sheer craziness that has come with the pandemic made me realize today, that if Kyler had been born mid-pandemic, our story..his story could be very different. Not only in the availability of the amazing people who helped him survive, but how so many of our family and friends were able to be a part of his first months of life. I know we would have dealt with what we had, but thinking back and imagining the possibility of being up there by myself 100% of the time with not getting to see Mike and the kids, Mike not getting to be there for Kyler's first days or any of the NICU stay, the kids not getting to see and bond with him, just feeling so alone up there would have be excruciating. So now back to our crazy day to day normal and being thankful that Kyler is doing so well.
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