Josh had his appt today with the neurologist. I have been debating since we got home when to post about it. Not that it was the worst of appointments, but we got some news we weren't expecting.
First of all, Josh's MRI looked OK. He did have a higher volume of spinal fluid, but that isn't too worrisome. Also he did have a couple parts of his brain that aren't developed as much as normal, but that is due to his prematurity, and he is developmentally delayed...so that basically proves that he is. Not that we didn't know! So anyway, nothing too bad or horrible there. The neurologist did say he was sorry this isn't a cut and dry problem on the reason why he is having so many problems. We do need to do some further testing at this point. He is going to have an EEG next week to see if he is having some seizures and if there is anything there they can find. He also has to have some blood work done to test for some metobalic disorders. The Dr also wants us to go to a Genetisist to have a work-up done. He said sometimes that will give the reason why he is so behind in some areas. He did his exam, then told us he would be back with the test orders and left the room. I turned to Scott at that point and told him I was so glad that the MRI was good, so I could finally lay to rest my fears of something being wrong with his head. (We had that appt this past June for his head shape if you remember, and the Dr basically blew us off.) I was feeling pretty good about this appt and that we can know there isn't any major problems going on. Then the Dr walks back in. He told us while he was out writing orders he realized he forgot to put his head measurement on the chart to see where he is at. Then it all came down on us. He said now he was pretty concerned about Josh and the fact that his head size has now fallen off the chart. It was below the bottom line. I then told him that at that appt in June the Dr looked at his head size on the chart and told us it was in the 30% and that if it went below that, we had a problem. So low and behold... we are now off the chart. He told us that is very concerning for his future. The here and now is OK, but longterm it isn't looking so good. He told us he will probably end up with some learning disabilities and cognitive delays later on. His brain is growing at the normal rate and his skull is not keeping up. So eventually that is going to cause problems. So that was not what we thought we were going to be told today. He told us that it is very important now that we go to a genetisist to be tested for some disorders that can cause things like this. Not exactly what we were hoping to hear. So we will go down next week to Primary's for the day and do all his tests and see where we go with the GI doctor. When he gets the results from the tests we will see if we have to go back to him right away or not. We will probably have to have some yearly tests done on his brain to see where we are going. So for the first time it has been a little overwhelming for me, and couldn't decide if I even wanted to post about it right now. It's so hard when there is nothing you can do to make your little one's life better or easier. But we will take it one day at a time and hope for the best. Thank you for thinking of us and we will keep you updated.
3 days ago