Gavin is having quite the week! Which means I am too! He has had 3 doctor appointments, an echo on his heart and a sleep study done to make sure he does well off oxygen during the night! Not to mention, we are painting the outside of our house and planning a belated birthday party for our boys since we missed having parties for them while Gavin was in the hospital! I have to make sure that I take time to breathe this week! I guess it's better than being bored!
Anyway, Gavin saw the neurologist on Monday. He ordered another EEG to be done on him in a couple of weeks to see if his brain wave activity is better than the last one he had in April. We still don't know if there was permanent brain damage done. The neurologist thought that Gavin looked well and is slowly taking him off the anti-seizure medicine. He said that being on this can slow Gavin down developmentally and make him really tired and slow, so hopefully when he gets off the med he will be able to progress easier. He was concerned about Gavin's eyes since one seems to look the other way at times. He said this could be a reaction to meds, a sign of brain damage or just a sight problem. So, now we get to add an eye doctor to the list! Oh, and an audiologist! I'm not concerned at all about his hearing though! He definately hears everything! Although, he has that limited hearing thing going on just like his brothers and dad do! They are very good at ignoring things they don't want to hear! The neurologist said one of the best ways to know if there is brain damage is whether or not Gavin tries to be social with us. In the past he wasn't so much, but the last week or two he has made progress this way by trying to 'talk' to me and looking at me more when I talk to him. We'll just have to wait and see. We may not know for years really.
Next we saw the cardiologist. He was very happy with Gavin's progress. He took him off another dose of dieuretic and told us that we could lower the calories Gavin was getting each day. He had been on a higher calorie formula since most 'heart babies' have a difficult time growing. Gavin is definately growing now! He's become quite a little chunk! The cardiologist also said that Gavin could come off the oxygen at night! Yay! Except, now we have to wait for the O.K. from the pulmonologist. Hopefully the sleep study shows that Gavin stays oxygenated during the night! Then he will be tube free! Like I said before, he does not like that tube on his face! The heart echo showed that Gavin's pulmonary pressures were normal! This is great news since they had been so high in the past. This is why we are able to maybe get him off the O2! Nolan came with me for these appointments and was my note taker! He just sat and listened and wrote things down that he thought were important! He was quite interested in everything and had a lot to talk about afterwards! He was a big help since we were given many changes to make. I only wish he listened this well all the time!
This afternoon we go to the endocronologist. Gavin is on Thyroid meds and levels need to be checked to make sure he's taking the right dose. So, this visit will probably be a boring one and hopefully not bring about anymore changes, unless they are good ones!
So, all in all there are good things happening with Gavin! Thanks for your continued prayers and support!
Love, Alicia and Family