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!
He is a lucky little boy to have you fighting for him.
Has barth syndrome been looked at? This is pretty rare and genetic….where boys get the disease and females are carriers. I have a friend who deals with this.
What about Childrens Hispital in Minneapolis? This is where they wanted to send me when I lived in ND and I insisted on Mayo and left just as frustrated as you with 2 of my kids GI issues.
I will continue to send prayers your way.
How old is Gannon? He’s so adorable and lucky to have you as his mommy! Our two year old (now he’s 42!) was not hearing right. Tubes made a huge difference. Hope it will help Gannon, too. Prayers for answers and treatment.
Continuing to pray for sweet Gannon and your family.
It’s great that you are such a wonderful advocate for him. Hopefully the time will go quickly before April arrives and in the meantime he’ll get other needs addressed. Fortunate that he is a happy baby and a good sleeper. The developmental milestones will come and I think things will pick up once everything else is done. Hang in there! Sending prayers.
Praying for you all. Lots of hugs!
You are a wonderful mommy fighting so hard for your boys. All of us mommies know how hard these waiting times are for you. So glad to hear how happy Gannon is. Three of our four boys battled tons of ear infections. They all had tubes but the oldest had three sets fail (clog and fall out) before they finally put in bigger and “permanent” ones. This finally worked and then were removed when he was maybe 6 or 7. He had pretty significant hearing loss till that time that they took out the tubes. He is now an adult and has an ever so slight loss but nothing noticeable to him. Keep up your vigilance. You will ultimately be rewarded for it.
Prayers for you all.
I agree with Cindy F Don’t be too concerned about the milestones yet until some of the other issues are solved. Then will be time enough to work on those things. He is so fortunate to have you and Craig as parents! Keeping you all in my prayers.
Sorry that this is happening to you. GOOD job on getting someone out to Work with him BEST thing that you can do under the circumstances!
What about other Hospitals? Rainbow Babies and Children in Cleveland? Or Cincinnati Children’sMedical Center? ( I live in Cincinnati….) I do not know if either of them would have what you need or any sooner. Just a thought.
Cincinnati Children’s has an amazing colorectal program as well as Nationwide in Columbus.
Mamma Bears always try to protect their cubs, even if the cub is pas 50 years old! People are so nasty when when people aren’t “perfect”. Best wishes and God’s. Peace.