Gannon Update + Botox didn’t work + Tuesday AM update

We had a terrible weekend with Gannon.

My poor baby was in so much pain.
For hours we sat on the bathroom floor and I just held him as he screamed and cried.

The Botox injections didn’t work.
We don’t know why.
If anything, everything got worse.
He can really only pass stool if it’s liquid.
He’s so anxious about pooping now that he think he gets even more scared if it’s harder for him to go.

This will now be our third week in a row driving to Iowa City.

Gannon needs to get the Botox injections again and hopefully they work this time or he’s going to have to have a bigger more permanent surgery.

So not only do we have to drive down for the Botox injections on Wednesday, we have to drive down tomorrow (Tuesday) to get him swabbed for Covid.

That’s two hours in a car on the way down there to get a swab jammed up his nose in two hours home.

They will not do it the morning of, it has to be done by 11 in the morning tomorrow so it’s not like we could even stay overnight.

I know it could be worse.
But tonight I’m throwing myself a pity party and I’m throwing a pity party for Gannon.

I’m so mad that we don’t know why he suffers like this.

All I wanted for Christmas was the genetic testing results. They still aren’t back yet. There’s no way to contact the lab and find out the ETA.

I’m just so sick of this. I was trying to coordinate all of these appointments while I was at work and try to rearrange my schedule so I wouldn’t let my team down or my family down.

It’s just getting really hard and I’m really sick of this.
I’m really sick of Covid.
I’m really sick of having to drive to Iowa city.
I hate that he has to have anesthesia again.

But more than anything, I’m willing to do whatever needs to be done so Gannon never has a morning like he did on Sunday again.

TUESDAY MORNING UPDATE: I’m feeling a little calmer this morning than when I wrote the post last night. I was a wreck on the way home from work – it all just kind of hit at once.

The on-call Gods are smiling upon me this morning and for some crazy reason – I’m on call! Craig is already on the way to Iowa City with Gannon, carver refused to wear pajamas for his pajama party, and I’m just chilling here on the couch typing this blog post.

I’m doing some more research on Gannon – there’s a condition called neural intestinal dysplasia which has a lot of symptoms that Gannon has. I’m reaching out to his GI team to see if we can do more imaging while we are down there as well. Maybe there’s a blockage higher up? Maybe we need to reach out to Milwaukee again?

I found another little friend named Anikin who struggles with much of what Gannon is struggling with. I reached out to Anikins mommy so maybe we could touch base. I find support groups extremely helpful.

I did get a message from the genetics counselor who said Gannons results should be in the next 1-2 weeks. I didn’t even know that it was a place you could call – I just know our blood samples are somewhere on the east coast.

Anyway, that’s all I know. Just trying to chill out. Thanks for all the support guys.

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8 thoughts on “Gannon Update + Botox didn’t work + Tuesday AM update

  1. Jill Klop says:

    Oh gosh! I am so sorry to hear that your poor little guy is suffering so much. I know how sad this is for all of you. Thanks for the update. I hope this round is successful. I pray for relief for Gannon.

  2. Catherine Odle says:

    It is no fun, trying to comfort your screamin baby, while they try to poop. A human funtion that should be easy. Hang in there. You are so strong. You, with your doctors, will figure it out.

  3. mpv61 says:

    I feel like a pity party is only for people who don’t have a reason to be down. When your child is having such difficulty and pain, how could you NOT have times when that really gets to you?

    You are doing a great job advocating for him, and I’m glad you’re reaching out to others in the same boat to find that mutual support. Positive thoughts and (very virtual) hugs to you and your family from the east coast!

  4. Kim J LeMere says:

    Sending you a BIG hug, and you can have a pity party if you want. How awful to watch him suffer so. I’m sorry this is continuing for Gannon and his family. Praying for positive news and relief for him.

  5. Susan the Farm Quilter says:

    I sent a link to your blog to my daughter who has a friend with a kiddo with issues similar to Gannon’s and hope they can get a leg up by seeing what you have tried with Gannon and maybe get into your support group. I’m so sorry that Gannon had such a bad Sunday…not easy for anyone, especially parents!! Praying you will have success with this next round of botox and that you don’t get called in!!

  6. Elle says:

    You are most entitled to your pity party. I’m so sorry this didn’t work for Gannon. Praying today’s works!

    Hugs to you all 🙂

  7. Ellie says:

    So sorry about this whole thing! Sure hope that precious chid can find some relief! 🤞🙏 Prayers for all that you can find a solution NOW!

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