Rise Up 4 Ruby

update

When we received Ruby’s EEG and MRI results neurology referred us to a neurosurgeon. Her appointment was yesterday. Aside from her being a complete mess the visit went well. The doctor said he does not think surgery is needed at this time. Her pressures appear to be similar to the last MRI. He is not concerned about the loss of white matter (noted in radiology report) bc it’s expected with this type of brain injury.

He sent referrals to two other specialists that will
Help manage her CP and recommended 2 different orthopedic items. Said we needed imaging of her hips yearly and closely watch her left ankle/leg.

She’s been cleared by neurology and neurosurgery for her eye surgery. Her father will be working out of town for a while so I’ve asked them to push it to March.

There are no new obvious reasons that would explain what triggered her seizures. So far the medication changes are working.

Yesterday was the third anniversary of what should’ve been her due date. Times like these remind me of how fortunate we are that she is still with us and how grateful I am for her surgeons, Dr. Kevin Lally and Dr. Natalie Drucker, and her GI Dr. Essam Imseis.

PS- we’re still looking for an all terrain crocodile walker.

We’ve started the 23hr EEG and let me tell you it was a workout for us both getting it setup 😅Tomorrow, after this is complete, she’ll go a few floors down for a sedated brain MRI.

update

Roughly 7 months ago we were told of the abnormal EEG readings and MRI findings. We were warned of the extremely high likelihood seizures would occur. At that time we were offered a rescue med and daily medication options that would both help with seizures and possibly help with her delays. We opted to start medication. Fast forward to Thursday 11/6, I got a call from Ruby’s nurse around 10:18 AM informing me Ruby had just had a seizure. Fortunately I was on the other line with someone from her neurologists office when the call came in. I was able to switch back over and get the info relayed to her doctor while I headed to pick her up. Rubys nurse and ABA staff handled everything as well as can be expected and I am grateful for all of them. It is hard for us to relax. Just when we think things are going smoothly Ruby throws us a curve ball. Reminding us to stay vigilant and prepared. I am grateful we knew this was a possibility so we weren’t completely blindsided. If there is such a thing as a perfect time and place to have a crisis this was it. And by that I mean a safe location, with eyes constantly on her, a nurse by her side, proper equipment on hand (she was in her activity chair insurance wouldn’t cover) doctor’s office on the line and a safe padded recovery area. Ruby is doing well and her med has been adjusted. Hoping for smooth sailing as we head into her birthday week 🤞