I wish I didn’t have an update. I wish everything was going great. That’s just not the case.
As you’re reading this I am preparing for Gannon to have an in-home assessment this morning. Gannon has been falling behind on some of his milestones. He doesn’t babble very much. He doesn’t have very many sounds or words. He is still quite a ways from walking.
If you recall Gannon’s ear drum ruptured again last week. Gannon was taken to the audiologist and ENT specialist on Tuesday. He had his hearing tested which revealed that Gannon has moderate hearing loss. When we hear noises starting at 15 decibels it takes Gannon at least 40 decibels to start to hear things. They even tried a different kind of hearing test which stimulates vibration in the bone in the ear. That did not go well either.
If Gannon was school aged and participating in a class room discussion, he would miss About 50% of the conversation. He hears what we hear when we put our fingers in our ears and plug our ears.
We aren’t sure yet how much of this is related to ear infections. He has passed other hearing screens, however none of them were done in the sound booth which is the gold standard for hearing testing in his age.
On Tuesday he was tested in the hearing booth and that’s when things went poorly. So that adds another surgery to our schedule because Gannon is getting tubes in his ears next Thursday. We are hopeful this will help his hearing loss. Time will tell.
In the meantime when Keystone comes to visit us tomorrow, I’m going to request that he start working with speech therapy right away so he does not fall further behind while we get this all straightened out.
He also has a swallow study to test how he tolerates different textures on February 28. Gannon does not tolerate food well and often chokes. He’s had a swallow study done in the past but it wasn’t very thorough or as in-depth as this next one will be.
Milawakee finally got back to me and they have absolutely no availability to see him before April 6 which really bums me out because there was a hope that he could get in to Milwaukee in March. I finally heard the answer yesterday that we have to wait till April.
This weekend and has been struggling with constipation and crying every time he has a bowel movement. We still haven’t advanced his diet beyond formula.
We are in this weird transition phase between University of Iowa and Milwaukee where is University of Iowa doesn’t really have anything more they can offer us and Milwaukee cannot recommend anything because they haven’t seen him yet.
In the meantime Gannon really only drinks milk and can tolerate some yogurt and puff cereal most of the time. Last weekend hechoked on a piece of Chex cereal and I had to give them a few back slaps before he threw up.
I keep trying to focus on the fact that Gannon is HAPPY! He is so happy. He is so funny. He is the chillest baby I’ve met in my life. I’m so thankful for him. I wouldn’t trade him for the world.
I love the way he bear crawls everywhere, I love the way he thinks he is SO FUNNY when he goes underneath the table, I love the way he sleeps through the night (I really love that!) and I love how he fits so perfectly into our little family.
I’ll keep fighting for you Gannon!