Carsyn did sooo good today. We had to wake him up at 5am feed him and leave by 530. He slept the whole 2 hours it took to drive there and to find the right building. Ha ha! Anyways they get there and check his weight, height and head circumference. He weighed 17lbs 4oz, 2 months ago he was 15lbs 9oz. Glad he gained some weight. He was measured at 27inches long and 2 months ago he was 25 1/2inches. Not sure of his exact head circumference. Then we wait for the neurologist to come in.
He did some different test with Carsyn, checking his eyes, reflexes, muscle tone, etc. All the while asking questions. I told him about the car accident, the being induced {not working}, then being induced again. Told him about the big bruise on Carsyn’s face and the oxygen he needed after he was born. Also told him about Carsyn’s Jaundice and our hospital stay. He then asked if his pediatrician had said anything about his head size. I said, yes and that she wanted to keep an eye on it but was not worried. Next he goes on to measure our heads. Saying we have normal sized heads, but Carsyn’s is very small for his age.
Then he pauses and writes down a bunch of stuff. Turns to me and says he is definitely developmentally delayed. Saying that he is really not far behind, but is delayed. He also says that Carsyn’s head size is concerning enough to order an MRI to find out where his brain is damaged. He also wanted Chromosome blood work done. He says that whatever happened, it happened in utero because of his head size. Whether it was a malformation or he didn’t get enough blood. I didn’t ask and not sure if he would be able to tell if it was from the car accident or not.
I asked if he thought it was cerebral palsy. He said he doesn’t want to label him yet, without further testing. He also said it won’t change anything. Whether it is CP or just some brain damage. He also said that hypertonicity doesn’t necessarily always mean CP. He said there is such a wide range of CP and that, if he just walked with a limp on his left side then it wouldn’t really matter. He felt that Carsyn’s high muscle tone in his arms were not that bad. Which I can tell a difference with that too. His legs are really tight though. He also said that cognitively Carsyn is hardly behind, so that is good. He said over all Carsyn looks great and to keep up with the occupational and physical therapy.
So after our appointment with him we went to the main hospital to have his blood taken. They actually took it from his arm. 2 whole vials. I had to hold him so tight and still while he was screaming. Worse thing ever. Poor guy, I was crying with him. After they were done, he was right back to being happy. They even gave him a teddy bear! 🙂 That blood work will take 4-6 weeks to come back. His actual MRI is now scheduled for April 19th and his follow up will be April 26th. We won’t know anything till then. It is a long waiting game, but I really am okay with this. Like he said, it really won’t make a difference in what we are doing. I am just going to keep on working with him. I am so happy that I am getting him the help he need.
Sorry this is so long. I want to write it down while it is still fresh so that I can remember it. If you stuck with me through this whole story, thank you! I am sending you a HUGE hug! Hope you have a great weekend. Thank you again for all your thoughts, prayers, emails. They mean the world to me.
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