Walking with Madi

Walking with Madi A page to share in the journey of Madi, a precious little lady who was diagnosed with Aicardi Syndrome. It's a place to encourage her and her family.

Madison Elizabeth was born on Thursday June 6, 2013. She weighed 7lbs 8oz & 20 inches long. She was born on time by c-section due to the cord being wrapped around her neck . During her 2 week check up on June 21st her pediatrician sent us to get an ultrasound of her brain since her head measured too big. Immediately we were sent down to St.Pete to All Children's Hospital. There she was diagnosed w

ith Hydrocephalus. On June 22nd she had surgery to have a reprogrammable VP Shunt placed. It wasn't long after that we were informed of her abnormalities with her brain. Then we learned that she has coloboma of the optic nerves and she may not be able to see. At the beginning of August she started having seizures and started seeing her wonderful neurologist. August 22nd she was finally diagnosed with Aicardi Syndrome. She is currently taking Keppra along with Clonazepam. She has been fighting ever since. Email is: WalkingWithMadi@Yahoo.com

10/06/2022
09/18/2022
09/18/2022

Mads update:
We have been to the cardiologist and her heart is good. He does want her to come back in a year just to follow up. Her sleep study didn't go great and insurance had denied the bi-pap so it was just a basic study. They were only able to get about 3 hours of her sleeping. Pulmology wasn't happy with what little results he did see so he wants another study but with a bi-pap. He put the order in through the insurance and again it was denied. We are now fighting that. Her fancy P-Pod chair hasn't arrived yet. They said everything is back ordered. Hopefully we will get good news next week. We are still waiting for the adjustments to be made to her wheelchair. Insurance took forever approving it. They are going to add a place for an oxygen tank. Kind of excited and kind of sad. She is more so on the oxygen these days. On good days she can be off of it for about 20 mins or so before she dips down. Madi was approved for home bound schooling. 60 mins a week. Finally the IEP & all of that is set up. 1st day of school is supposed to be Tuesday. We shall see. I already don't like her but dad said I at least have to give her a chance. Good luck Aunt Jessie! Haha! Next month she has 3 appointments on the same day. GI, pulmonary, and urology. It's going to be a long day.

08/17/2022

Update: Madi has been seeing a pulmonologist. She is pretty much oxygen dependant at this point. We have a sleep study scheduled. She has seen a cardiologist because of some swelling and pulmonary was a little concerned. We are now scheduled for an echo. We were able to purchase a PPOD chair with the help of some donations and an amazing PT! We have no idea when it will be delivered however it is purple! This year we have decided on home bound schooling. That's still a working progress so Madi has an extended summer break! 😉

It's been a while since we have posted anything. Here's a little photo dump!
08/17/2022

It's been a while since we have posted anything. Here's a little photo dump!

Hoping and praying that Mads can hang in there until her pulmonologist appointment on the 7th. So thankful for home oxy...
03/29/2022

Hoping and praying that Mads can hang in there until her pulmonologist appointment on the 7th. So thankful for home oxygen though.

A few days ago....
03/29/2022

A few days ago....

Today is Rare Disease Day. Madi is 1 out of approximately 1,000 cases in the US and roughly 4,000 worldwide. 🥰
02/28/2022

Today is Rare Disease Day. Madi is 1 out of approximately 1,000 cases in the US and roughly 4,000 worldwide. 🥰

02/09/2022
01/26/2022

Home away from home. We are hoping the stay will be short!

Snapchat photo dump
01/19/2022

Snapchat photo dump

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501 6th Ave S
Saint Petersburg, FL
33701

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