Ian Update- 8/31/24
Ian had a couple of doctor appointments this past week.
On Tuesday, we added a new specialty in the mix and saw ENT for the first time. Around December, Ian developed a cough that we had the hardest time getting to go away. Around the same time, Ian was admitted to the hospital for breakthrough seizures, so they tested him for all the big stuff: flu, covid, and rsv. Everything back negative, so we treated it like a cold. Come February, Ian still has a cough and is now all of sudden snoring, and snoring loudly. The cough is really what keeps all of us up at night though, and after a couple rounds of antibiotics not working, we decided on a different approach. Ian began getting a nasal spray used for allergies. And he’s been fine ever since. Except the snoring stayed. His PCP recommended seeing ENT to make sure something like his tonsils or adenoids weren’t restricting his breathing. This past visit was more of a consultation, but it was decided to do a sleep study on Ian to see if we could pinpoint what’s going on.
On Wednesday, we saw the brain clinic. This is when we see about 6 different specialists in one sitting to see how Ian can be best supported since his brain injury. Overall, Ian is doing really well. The biggest thing we talked about was Ian still not being toilet trained. We have had such a difficult time getting him to use the toilet consistently. It’s a balance. We have to be consistent, but we can’t push it. Pushing him too hard can sometimes have the opposite effect. We have to just let him go at his own pace. But something they suggested was simple: see if he can be introduced to the toilet at school. We’re doing all the right things in the home setting, but he’s having inconsistency when he goes to school and isn’t using it. I sent a note to school the next day. Realistically, I wasn’t sure how this would work. Ian can’t be pulled out of class every half hour to try to use the toilet. So, I asked to start small and maybe just try once before lunch and once after lunch. His one-on-one nurse the school staff were completely on board, and actually added two more times of attempting to use the toilet at school. And MY GOODNESS, I can’t believe what wonders that did. The first day, Ian used the toilet once at school. The second day, he had no accidents at school AT ALL. And in those two days, only had one accident at home. HOW AMAZING IS THAT?! I am just blown away how it all of a sudden clicked for him. Despite the accident here and there, that’s a tremendous difference from where were at just earlier this week.
This upcoming Tuesday, Ian will have a follow up with neurosurgery to check how he’s healing from his emergency shunt surgery. This will be his 6-week checkup, so he should get cleared to start participating in gym class and other activities again.
The toilet training thing for Ian is SOOOOO huge. This is a step in the right direction. Not only to be where he was before his brain injury, but a step in the right direction to live as much of an independent life as possible. We don’t know if that will ever be possible, but we work each day with him like it is. To baby him would be an injustice to his development; He can’t learn if he’s not given the opportunity. I’m so excited to see how he continues to develop and defy the odds of his brain injury. #ChampIan