Thursday, July 19, 2007

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


Melissa said...

What ped. opthlamologist is your neuro sending you too? I greatly dislike your neuro telling you it might mean brain damage, many kids have grand mal seizures and does not cause permanent problems with the brain function.

As far as the eye turning in it could be muscular like strabismus and that can be corrected. Don't let this doc scare you with his worst case scenioro stuff. I find these neuros to be overly dramatic and have horrible patient relationship skills. Did he actually use the term brain damage? Shame on him.

I advise you to not to use "brain damage" also because that is a term the ignorant world uses to say your kid is not worth doing anything for or to help learn or function in this life. It makes him less of a person. Gavin is a wonderful baby and comunicates with you in his body language, just developmentally where he should be with all the challenges he is overcoming.

Becareful other special needs parents will hen peck you for that word(I speak from experience), because "Brain Damage" signifies loss of hope - why bother to try. My son is not brain damaged he is "cognitively delayed"

So who is the endo you see and do you like them?

I'm glad Gavin is getting off more meds and what a blessing it will be when the last tube comes out. Are the gagging epsidodes subsiding a little - you didn't mention it. I have been praying for relief from that because that must be so hard to watch. Aidan and I should be back in Michigan on Aug 6. I would love to come see you all.

Melissa Hamilton

Amy said...

Wow, I might have to send you a calendar just for Gavin's appointments! ;o) It sounds like overall, things are looking great and Gavin is progressing at a positive rate (but of COURSE he is...)! So glad to hear this!

Thanks for keeping us posted!

I love you all!

Aunt Amy

Inspired said...

All great news!! Not sure how you do it all and do it so well. You are beyond an amazing mother!! We are thinking of you.


Annette Gysen said...

I really like Melissa, Alicia. I think you should throw out all the specialists and just stick with her!

Thanks for updating us. Glad to hear the little guy is coming along! Happy belated birthdays to all of your boys! Have fun at your parties!

Anonymous said...

Hey....sounds like great news all the way around!! Do you remember Melissa having that 'wondering eye'? Remember she had to wear a patch and my mom would draw an 'eye' with fancy dancy eyelashes?!? Too funny! that brings back the memories!! I also agree with your friend Melissa H. (not to be confused with my sister melissa..we'll call her Jo to keep things, Jo had brain damage done to her at the hospital when she was also very young...lost her eyesight, had to learn EVERYTHING all over again, from talking to walking and everything inbetween...and to look at her when she was would never even know all the issues that little girl had!!! God does amazing things...which is obvious daily when you look at Gavin!! I know that dr.s mean well and all, but sometimes they don't leave room for the 'impossibles'...
Love you!!
ps...I'm sure Nolan's 2nd grade teacher will love you for all the note taking skills he's sure to learn this summer!! lol!

Anonymous said...

Sounds like Gavin will be strong enough to make it to church. We are looking forward to seeing him and God's promises visibly administered in the sacrament of baptism next week Sunday evening. We rejoice with you in God's provision.

The Freswick Family