October 9, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

Our sweet Annadelle has had a better day today, we believe due to the introduction of Gabapentin last night. She was able to sleep through the night, only waking up twice for a short period of time.

This morning she was able to eat a bit of French toast and sausage. She had some trouble at first, but has quickly learned she needs to take tiny bites and chew more than she is used to. She also ate a bit of fish, mashed potatoes, and bread for lunch. Slowly but surely, we have faith her strength will return.

She also worked with PT and OT this morning. We are still not seeing any movement in her left leg or foot at all, but her arm movements appear to be getting more and more. We know we have a long road to go.

Something the doctors have mentioned in the possibility of a treatment called plasmapharesis. It is a very invasive procedure and is not proven to work, but then again steroids and IVIG are not conclusive treatments, either. I am praying we see more of an increase in movement so that we do not have to resort to the plasmapharesis.

Right now we are relaxing and watching The Jungle Book while we await word from the doctors as to whether or not we will be moved out of ICU today. Dr. Vidal (our favorite doc) said she didn’t see why we couldn’t go today, but that they would huddle later and determine for sure it they would set us free from the PICU.

Please continue to pray hard for my baby girl.

We finally made it out of the PICU today and are settled in our own room! We are now in the pediatric wing in room 451. We even have our own bathroom, praise Jesus.

Our new nurses seemed shocked to learn we have been doing a lot of her care on our own (turning her, bathing her, changing her, etc.). It honestly made me wonder how a parent has a child in the hospital and not do that?

Overall today she has been in a great mood. We played with bubbles, watched movies, and snuggled a bit. I miss our days at home when we would just snuggle on the couch and she would ask me, “Is it my bedtime?” when she got tired. We have always had this thing where we will snuggle up in the bed facing each other, her putting her head close to my heart for comfort. I’d give anything right now for her to be able to reach around me during those snuggles. It’s the little things you take for granted and miss when they’re gone.

I know we have a long road to go, but my patience is slowly wearing thin. The wait to see if she will gain her mobility back is agonizing. Not only have I prayed for full recovery for my sweet girl, but also for patience and strength for myself (and Chris). God is working in her on His time and we are remaining steadfast in our faith.

All I ask is that if you’re reading this, you keep my baby girl in your prayers tonight and for many nights to come.

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