Before the doctor comes in to see us there are a few things they do at every visit. They take Carson's height and weight and they measure his head. He does okay with the weight because it's a scale that isn't real sensitive to movement so he can stand on his tip-toes and move about and it will still get an exact number. The height and head measurements require him being touched so of course the screaming and the kicking start. I have to admit I'm getting better at restraining him.
They then move us to another room and ask the normal questions about medications (vitamin only), home life, stress level (for him, not me), diet etc. After that the assistant leaves and we wait for Katie the doctor's assistant to come in. She always comes in first and goes over all of the preliminary stuff with me then goes to discuss with him before he comes in to talk. Last year when we left our instructions for Carson was to give him a job to let him know he has a place in the family. The job we gave him was to throw away his diaper. It sounds funny but to this day he will do it and then wait for his much-deserved applause. He is so proud of himself, which makes us very proud of him.
Katie's questions for us start with her asking how he is doing using his iPad. When I tell her that he is now communicating more with it she is pleased because it is a huge improvement from the year before. We then briefly talk about the episodes with scratching and pinching when he is mad. I explain to her that it is usually me that gets the brunt of the anger but sometimes he does go after his sister or the dog. She asks how he is doing in school and whether or not he is acting appropriately with the other students in the class and I explain to her how he is doing itinerant right now so he isn't really with other kids too much. She told me that they have a behavioral clinic at Children's Hospital that they could send Carson to, to see if they have any suggestions to combat the aggression before he gets too big and I can't handle him anymore and he hurts me more than just breaking the skin.
The conversation moves to his diet. It is interesting that just two days before his pediatrician mentions to me that he has gained weight and then she is questioning what he is eating too. I think it's funny cause the little guy really is skinny. He is just getting fuller in the face and the tummy. I know he needs more of a variety of food but I'm doing the best I can with a stubborn child with sensory issues. Again, I'd rather him eat chicken nuggets and keep it down rather than eat a bunch of food then throw it up because it's slimy. She asks about his eyes and his ears. The appointment for ophthalmology was the following day so I didn't have a lot of information for her yet.
She asks about his heart and if he has been seen by cardiology, which he has. I'm not sure if I have touched on that or not but since Carson has hypotonia (low muscle tone) we have to keep an eye on his heart. The heart is a muscle and could weaken over time. He saw a cardiologist last year and thankfully with an EEG and echo cardiogram we found out that currently his heart is healthy. We go back bi-annually. The hard part about these tests is they require you to be perfectly still and quiet. No easy feat with a small child.
The next question was about seizures. There are a few children with his deletion who do have petty-mal seizures. Carson has been known in the past to do this kind-of blank stare thing where you don't know if he is just daydreaming or if he is spacing out. I only notice it when he is restrained (like in the car or at dinner) he will sit perfectly still and just have a complete blank look on his face. You can snap your fingers or touch him and he won't budge. There is a medical condition known as absent or 'ghost' seizures. We have questioned in the past if that is what is happening or if he is just being a space cadet.
Katie excuses herself and leaves Carson and I to ourselves for a few minutes while she fills in the doctor. I get Carson out of his stroller and let him hang out with me for a few minutes.
This is Carson saying hi :)
After ten minutes or so the doctor comes in. He takes a few minutes to study Carson's face and demeanor. He always makes notes about changes in his features. I was really surprised that Carson wasn't afraid of him. He was actually taking his hand and trying to show him things on his iPad. I have never seen him do this before with someone he doesn't know, especially in a hospital setting.
The first thing that he discusses with me is the aggression. He told me that it's actually normal childhood development for him to lash out at me in particular but also with Baylee. He said that most children do not hurt their dads because they won't put up with it and also they can be intimidated by their fathers. He said with his communication problems that we will have to try to catch him before he hurts someone so he doesn't get big enough to do major damage. He said that the randomness of his lashing out could be part of his SPD. He told me to just sit in a room. No TV. No radio etc. Just sit and pay attention. You will hear the hum of the electricity, the feel of the air on your skin, the sound of birds and clocks ticking and wind etc. All things you don't really notice in your normal day-to-day lives. Things we can tune out. With Carson, he can't tune those things out. Every single one of those things and more are all processing through his brain every minute of every day. He said if you add being pissed off about something to that process going on in his head, it is just the thing that sets him off. Only because he isn't really thinking about what he is doing, he is just reacting to a situation. It makes total sense. I came home and that night sat in my bed room alone for a few minutes. I was amazed at how many things really are going on. The only time I notice them is when the power is out and you notice how quiet it is. Especially living where we do. It is very rural so when it's quiet, it's REALLY quiet. He said that the behavioral clinic can not only try to give us suggestions about ways to combat these episodes but if medication is needed later on (no!no!no!) then we're already in the system.
He brought up what I was planning to do with him for school and I told him that I am really leaning towards home school. I briefly explained my little sister being in college to become a special education teacher so I was hoping that I would have her on my side to help with a curriculum. He mentioned that some school systems will actually let you home school while still providing services to the child for PT OT and speech. This way the parent does all the work education-wise but the school still gets to count them for grants etc. I am going to see if his school system is one that does that, or if maybe Baylee's does since she is in a different district. If not, I am more than happy to find an outside agency to provide services for him. He just told me not to just dump him into the school system and hope for the best.
Another thing we discussed was Carson's genitals. He had to have a hypospadias repair done when he was 10 months old to correct the opening of his penis. It was not where it was supposed to be. Even after surgery it isn't perfect. Not exactly something I should be discussing in public but it actually lead to a very interesting conversation. Carson one day will hit puberty and will probably have feelings and desires like everyone does. The thought of that scares me to death. It's a bad example but Baylee's rabbit just hit maturity and he humps everything in sight. Carson already loves to be naked, this is just going to get worse. I guess I should be happy I don't have a girl and have to deal with periods etc. but at least now you can get the Depo shot and that lasts for 5 years. I can't imagine what would happen if Carson figures out what sex is. In the movie I Am Sam, Sam is actually much more mentally mature than Carson is (at this point anyway). What would happen if he fathers a child?!? Ugh. Not something I should be stressing about now, he's only 5.
He touched on his weight and said that right now he looks very healthy but the reason they question his weight gain so much is because many people with chromosomal abnormalities end up becoming morbidly obese and we don't want that for Carson. Completely understandable. He also said that we need to keep an eye on the blank stares because he could develop seizures at any time because there are several other children who do have them.
The last thing (that I can remember) that we talked about was trying to get social security disability for Carson. Because he will need services for the rest of his life he said to try to get it for him. He would then get Medicaid as a secondary insurance to the one we already have through Mike's work. If we are denied then we've only lost a few day's worth of time. That is going to be my next project if I can ever figure out a time to call. You sit on hold forever.
I can actually say that I left there feeling pretty good. Most times I'm crying by the time I hit the elevator because I think he is doing so great and then they knock me back to reality. This time I didn't go in with any preconceived notions that Carson is gaining speed and it was the best way to go. When we first started going there we were told that he would follow us until Carson was 5 but then at this visit he said for us to come back in a year. I'm okay with that. I like hearing what he has to say even if the appointments are long. We were there for over three hours. Then we had an hour drive home. The next day we would be at a different Cincinnati Children's branch for ophthalmology.
XX
No comments:
Post a Comment