Another month has come and gone! And another busy one it was!
The boys started out the month by getting their annual flu shots. I'll be the first one to say that I am paranoid of sickness and being around people who might be sick. If you're on social media, then you've probably seen many people affected by RSV, flu, and other viruses this fall. I happen to follow people with children that are similar to Beckett, ones who are severely impacted by even just a cold, not like you or I, and for that reason I am fearful for Beckett. I am grateful that he has the ability to cough and sneeze, because those are huge when trying to expel viruses from your respiratory system, but I think I will always be nervous when bringing Beckett around people. Moral of that story is to say, that they got their annual flu shots but hopefully will not get the flu!
Next, Beckett had his nine month hearing test. Hearing tests in the past have included him being asleep, while they put wires into his ears and send different signals through his ears. This one was different. His doctor started off by trying to put some wires into his ears and send signals, but he was not having any of it. So I wouldn't say he failed that portion, we just weren't able to get any data. Next the doctor left the room (which was soundproof) and went to the room next door that is separated by a glass window, and began to press buttons that made sounds and exposed animals in our room, as long as Beckett turned toward the sound. He did it a few times, but then began to get quite restless, so we stopped the test. Over all, it was fine, but mostly inconclusive. It's not alarming though because not only will he have another hearing test in 3 months, but we see him everyday and we know he's hearing us and turning his head to sounds. It's ironic to me that everyone was so concerned about his hearing when I was pregnant, and immediately following his birth since he was born with congenital CMV, and that is the most common effect, but his hearing has not been harmed in the slightest at this point.
His EEG followed, and I made a post regarding these results. We will be going to the hospital for his 48 hr EEG on December 11. Please pray for Beckett that not only this goes smoothly, but that we get some conclusive results. No matter the result, we will do whatever it takes to keep him happy and comfortable!
After the EEG, we went to Houston for a friends wedding. Regan went stag, as I stayed home with the kids. He had a great time, and I am attached at the hip to the boys, especially Beckett, so I also had a great time! Then we came back home to spend Thanksgiving with Regan's family.
Lastly, he had a follow up with his Developmental Pediatrician. LOTS of things discussed at this appointment because she looks at Beckett as a whole, in terms of feeding, sleeping, movement, growth, etc. He is still nursing 5-6 times/day, and eating about 4 jars/day. He's always satisfied after a feeing which we agreed is the most important thing, but mentioned the potential for a g-tube in the future if his ability to eat and amount he can eat, do not align, as that is common in kids with Lissencephaly. He's still not sleeping through the night, and let me tell you it's exhausting! I'm not sure if that's because he's having seizure activity, if he's teething, or what is going on. Every night brings something different, and it's very difficult to pin point, but he's 10 months old now so something is going on. I don't feel comfortable sleep training him. Some might say I spoil him, but I see it as I just cherish him. I never want to do anything that will be difficult for him because his life is already going to be difficult. The doctor mentioned he could also be experiencing muscle pain/discomfort as part of CP which I honestly had never even thought of, but I could see that as well. In his medical chart, he's not actually received the diagnosis of CP, and I asked her about that. Basically, with a Lissencephaly diagnosis, he already qualifies for all the things he's getting, all the different programs through Tricare, and having a CP diagnosis doesn't really do anything for him. There's nothing that would change treatment wise for him, and while every doctor has put in his chart that he meets all the criteria for the diagnosis, it's never been explicitly added to his file. His motor skills are delayed *shocker*. She also noticed his hand/eye coordination to be lacking which she believed could be influenced by the blindness in his right eye. We'll find another developmental pediatrician when we get to WA to follow up with Beckett in another 3-6 months and continue to monitor his progress. He's gaining weight (the 33rd percentile now), but his head has been consistently in the 1st percentile since birth. Microcephaly is a side effect of Congenital CMV, on top of Lissencephaly and that looks to be where he could be going as well since his brain is not developing like a normal baby's would. But gosh he's so darn cute.
He has also been having his therapy every week and is doing great! It's incredibly informative for me to watch the therapists, and get more ideas for what I can do at home for him. He is able to roll over multiple times in a row, which is huge. He's getting closer to sitting up, but it's really hard for him since his back extensor muscles are so strong. As he's getting bigger, it's getting harder to counteract those muscles, but his stander will help with that as well as just trying to do PT at home. He had a yogurt melt in Speech for the first time, and was very unsure what to do, and really didn't like it. I have also seen horror stories online of kids who know how to properly chew and swallow them choking, so I will probably not give them to him again seeing as he doesn't know how to properly chew food.
Other exciting things that happened this month for our family included finally getting a new car!
We've known for many months that we need to get a bigger car. After contemplating for awhile, we took the plunge. There were many hurdles to get there (man, car salesmen are some of the most difficult people to work with!), but we got it done! Would I have loved to get something cool, like a Tahoe, for our growing family? Absolutely. But did it make sense with Beckett's evolving needs? No. There's a reason you always see vans in handicap spots, and we have to be ready for that need, rather than buying a car now, and having to buy another one in a few years if we need to be able to convert something for him. SO, a Kia Carnival it was!
We also got what we will be using as our double stroller, a Wonderfold Wagon. I heard about it from another mom who has a son with a different neurological disorder. She's able to put in his supportive equipment and it fits the needs for him, so I wanted to do the same for Beckett rather than having to get a double stroller and something else that would be useful for him individually. It's incredibly spacious, and I am so excited for all the places we will be able to take the boys to see using it (once the weather warms up in Washington).
Next up, movers are set to be here in *gasp* 13 days from today. Then we will be saying goodbye to Fort Hood, and goodbye to Texas for the next couple years as we embark on our next adventure on the west coast.
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