Gavin’s health isn’t doing so well

I’ve been in touch with his pediatricians office to discuss his diarrhea. The doctor is out today but I should hear back tomorrow.

It’s been about 5 weeks now and while we were told it was better long ago, Gavin didn’t want to be on the BRAT Diet, so he decided not to tell us the truth.

He’s now under 120 lbs and that’s the lowest he’s been in many years.

I spoke with the gastro nurse at Akron Children’s Hospital and she’s speaking with the doctor. She’s going to figure out what we need to do and how soon we need to be seen.

She also figured out why Gavin’s script for Ensure wasn’t filled. It was sent to the wrong pharmacy. It’s got to go through the same place that Gavin’s IVIG supplies come through.

I was trying to get him in to rheumatology as well. Apparently he can’t be seen at Akron Children’s Hospital because he’s a new patient and over the age of 18. That means we will be adding that to The Cleveland Clinic column. I still have to work that out but I’m exhausted right now.

The reason for rheumatology is because he needs his Ehlers-Danlos officially diagnosed. He struggles daily with very loose joints. His hips, shoulders, knees and elbows pop all the time. His joints pop out of socket and it’s very painful.

Rheumatology is the right place to begin for this kind of problem.

I’m waiting on several calls before we can proceed with scheduling a new appointment.

My brain is completely fried and I need a freaking nap. I’m really nervous because Gavin seems to be literally falling apart.

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Suzanne Olsen

Sounds like he might have what lizze has.


Wish I knew what to say as you faces these diseases and barriers. Your family is the poster family…

C. Johnson

So sorry he’s feeling so badly. Yes, dealing with just the bureaucratic part of the medical/insuran…

kim gebhardt

Why not get some Ensure from the grocery store while waiting for the prescription to come through? You can buy it almost anywhere and they have lots of flavors. They have pudding too if Gavin likes that. If you are trying to put weight on him, feed him milkshakes. Before my dad died I was trying to get him to gain some weight and I made him milkshakes. 1 cup of vanilla Haagen Dazs and 1/4 cup each of heavy cream, chocolate syrup, and peanut butter. It was like eating a Reese’s cup milkshake and the calorie count was around 1300 for just under 2 cups. It’s important to use the Haagen Dazs because it has the most calories of any ice cream out there. The peanut butter also adds in some protein which Gavin probably needs if he’s that underweight.

Cynthia Shannon

❤️ sending prayers for you and Gavin, That is an awful lot for one person’s body to go through.