This is our third day here and there has been so much done! We have met with geneticists, neurologists, ear nose and throat doctors and many more. Gavin has had so many tests done, I can't even name them all. Primarily he has had an EEG, EKG and an extensive hearing test because he keeps failing his hearing tests.
The conclusions are still unknown . . . at first look the geneticist could pin point a "syndrome." The issue of Moebius is still on the table and so is a syndrome called CHARGE syndrome. CHARGE stands for :
Cranial Nerves
Heart
A (I forgot, but it has something to do with nasal structure)
Renal
Genital
Ear . . . the three issues that make this a possibility is his cranial nerve problems, heart and ear problems. The others don't apply, so the doctor is waiting for the more conclusive hearing test results. That will help him to decide whether or not we should look into this more closely.
Other than that we are waiting. Things work at a whirl wind speed here. . . much different than we have been used to. Some parents complain that things take so long, but I just smile and thinks to myself "they have no idea what waiting really is."
Gavin had an OK day - he had a few little episodes that made the nurses react more quickly. He is showing them what he is capable of. :)
3 comments:
Lindsay- I love the pics. Thank you for posting about Gavin. He's so wonderful!
Diddo on the so glad you're keeping us posted. Devin, Misti, Steve and I are coming up tomorrow for conference, so we'll make sure to drop by and see you!
Lindsay and Jason - Heidi Elsasser let Scott & I know about your little Gavin and led us to your blog...Gavin is absolutely gorgeous. You can tell he's special just through the pictures. What a lucky boy to get to come to such incredible parents. If you need ANYTHING, and I mean anything, please let us know. In the meantime know that you are all in our prayers. We know that miracles occur in many ways and often unexpected ways. There are so many things I want to say but mostly I just hope and pray that you can feel the love and understanding of the Savior and of all the support and care we're sending your way.
Malia Shaw
Post a Comment