January 13, 2019 Snow Day

I woke up this morning, peeked out the window and discovered several inches of snow on the ground outside of our room at the Children’s House. I let out a sigh as I wobbled my way to the bathroom to turn on the shower, dreading the morning ahead solely because of the short walk to the hospital in wet, slushy snow.

Snow in Baltimore is just about identical to snow in Alabama except the residents here seem to handle it pretty well (i.e. everyone didn’t panic and rush to the nearest Walmart for bread and milk). By the time I made it outside, city workers had already cleared the roads and sidewalks pretty well.

I made my way to the hospital, through a few elevators and the long tunnel over to Kennedy, and found Chris and Annadelle still in their pj’s. She had eaten breakfast but was otherwise not ready for the day to begin. Her and one of her roomies, Matthew, sat together and watched their iPads for a bit before we started to get her ready to leave.

Chris and I dressed her, brushed her hair and teeth, and bundled her up for her first TLOA (temporary leave of absence). We had originally planned to go to Target and do some much needed shopping, but the large amount of snowfall kept us from doing that. I am hoping we are able to go within the next few days. Even with a car here, navigating around Baltimore isn’t easy.

Instead of going to Target, we decided to get a little change of scenery and spend the day at the Children’s House. I thought Annadelle may want to hang out in the room, but she chose to spend almost the entire day on the lower level in the play room.

It was so nice to be able to utilize the free food in the house kitchen, leftovers from last night. We spend a ton of money on food in the hospital and have been trying to keep costs down by ordering a parent tray for each of us. Even then, it is $6.00 a tray, $12 per meal.

A few days ago we met with the entire care team to discuss the plan of action. We were told then our expected discharge date is February 7, although that Can change depending on the progress she makes in therapy. We know we will at least be here through the 7th so we have been trying to come up with some meal ideas I can make out the house and bring over to the hospital in to-go containers (hence the reason I need to go to Target!). If you have any ideas of easy meals for this kind of situation, I’m all ears.

The schedule for tomorrow is pretty busy with therapy beginning at 9:00am and ending at 6:30pm with a massage. Annadelle said she is “so excited” about the massage. We also have a consult request for acupuncture so we will see how that goes.

Annadelle will also have school tomorrow in the education classroom for 30 minutes. I have been trying my best to work with her on her sight words, letters, and number recognition. I feel like we are so far behind but am praying I can get her caught up before the beginning of the next school year. In Alabama, kids are not required to go to kindergarten so she won’t actually have to repeat it. We would like her to be able to go into first grade with her classmates. I know we will need to get an IEP set up for her but, honestly, I have no idea where to start on that. It will be on the top of my list when we get home.

Please continue to pray for complete healing for our sweet girl. It is so hard for me to think about her being immobile like this for the rest of her life. I pray for the day she can walk again and be her independent, sassy self. I know all things come in God’s time, I just wish he would provide me a peace of mind in the meantime.

Thank you for your support. It is truly appreciated.

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