The little man, an update

The little man had an excellent appointment a couple of weeks ago. This particular doctor is part of the medical home clinic at our local children’s hospital and he operates as kind of a catch-all who coordinates our children’s hospital activities, gets everything to our regular pediatrician, and serves as a place to meet with multiple therapists/services at once. Great place. Love it. They tried to tell us we didn’t have to come see them anymore, but we balked at that. Even if the appointments are just check-ins, we get a huge benefit from them and have someone to call when we are having trouble dealing with the children’s hospital red tape.

This appointment was extremely productive.

#1 – the little man is off of his reflux medicine. This appears to have cleared up on its own with age and weight gain. We have to watch him to make sure he isn’t still having problems, of course, but this is a big step that cuts an entire medicine out.

#2 – the little man is off of his daily Flovent. He was taking the Flovent as a precautionary measure since a three-week stay in the hospital for respiratory issues three years ago. The dose had been slowly cut down and now it isn’t needed at all. Related, but not an outcome from his appointment, the little man hasn’t needed his emergency Albuterol inhaler in two years.

#3 – the little man is off of his nighttime pump feeding. This one is my favorite. The little man takes all of his meals through his g-tube. Until recently, he still received 16 oz. of liquid overnight through a slow feed. This is completely gone. We are all daytime feeding now and I really hope this will be a positive step in getting him to eat a significant amount by mouth. Plus, I just can’t explain how happy we are to be free of the tubes and pump at night. It is amazingly freeing!

What does this all mean? Basically, his ancillary medical issues appear to be clearing up leaving just your basic cerebral palsy behind.

Therapy news – we are talking about putting the little man in hippotherapy (horses!). I really think he would love it and there are some excellent programs in our area. There isn’t an easily accessible water therapy nearby, so this is definitely out next best thing.

Scary news – the little man is turning five in October, but since his birthday falls past the deadline he won’t start kindergarten until 2015. I’m terrified. This fall we are going to start checking out the program in our school district. If it isn’t acceptable, we will move on to look at other options. I don’t have a clue what we will do with him in the summers once he starts school. I have major planning to do. Everything is so easy now. His daycare is his therapy center, insurance pays for it, there are nurses on duty, they are only closed two weeks out of the year, etc. It sounds like everything is going to get significantly less-easy.

Exciting news – the little man calls me “mama” sometimes. It only took four-and-a-half years! He uses the “ma” sounds for a lot of things; most people think he is saying “mama” a lot, but no, he is saying “mine.” Sometimes though, he tries really hard and the “mama” comes out a little bit different, more like one solid word. When that happens, he is calling me. I love it.

Fun news – the little man has learned to say “uh-oh” when he drops something. It turns into an annoying game, but is so adorable you can’t help but play for a while.


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