05/20/2024
Update on John Wayne:
As this school year comes to an end, I wanted to give you all an update on Johnny!! I can’t believe next fall he will be a kindergartener, time sure flies.
So January he did water therapy and he loved it so much, we are going to look into doing it again maybe next winter. They scheduled for water therapy only a month at a time, so it’s not that long it goes pretty fast.
February, Johnny had a Cardiology appointment and his heart is doing wonderful. It is growing and is functioning great. Dr. Thorsson is Cardiologist was over the moon happy. We didn’t do any medicine changes, he is still taking a diuretic Spironolactone, a heart medication Losartan. Since we are not changing the dose, his body will eventually wean himself off the medication. We only see his Cardiologist once a year now, so we won’t see him again till next February.
March, Johnny had his 5 year old wellness check and did good. He didn’t pass the vision test at the check up so made an appointment at Kellogg eye center in April and passed no problem. In March he also saw his physical medicine doctor, Dr. Pruente. We only see her once a year but she is the doctor that orders John’s braces for his feet, orders the PT for him, and any changes to his wheelchair. We found out that she is moving in August and will no longer be John’s physical medicine doctor. We are so sad to see her move, she has been with us since the beginning with John. In that appointment we talked about doing another round of casting to his legs to see if we can get them any straighter. We also talked about him starting basketball in the Fall with the Wolverine’s wheelchair team. Johnny is looking forward to that.
April, we saw John’s urologist and they did the normal Ultrasound of Kidney, and then do a bladder test to see if his bladder has grown which it has, so that is good. Dr. Sack thinks it is possible for him to get potty trained but we have to see how long he can go with out getting wet and time it off of that to have him sit on the potty. Going p**p seems to be going better, so I think there is hope that he will get there, it is just going to take some more time. The month of April we also did casting on his legs, Johnny was not a fan. We have not done this in about two years and John doesn’t really remember. He was a good sport though and he got through it. It did help a little with straightening his legs. We are back doing PT once a week and John enjoys it so much. We are taking a little break with school ending and his PT girl Emma will be on vacation, he will pick it up again in June.
We are looking forward to the summer and there are a few things will be doing to be active this summer. Johnny is also loving being a big brother and is very helpful for the most part. I feel like Cassie make him try to stand more and makes him want to try to walk more. He is growing so fast and we are so proud of him. He is truly an amazing little boy!!!
