Our day didn’t start off very smoothly – not anyone’s fault, just many different things that went wrong.
Tori didn’t sleep well, so none of us slept well. Not a great way to start a day like this 😄
We didn’t know that we had to tell the front desk that we needed to take the shuttle, so that put us behind. Then, when we got to the hospital, the lady at the front desk was entirely unhelpful and gave us incorrect information that sent us to the wrong part of the hospital. We ended up being 20 minutes late, which stressed me out because I hate being late.
At least the hospital is bright and colorful and fun 😄
It turned out that it was okay that we were late because they were running late, too. However, we were seated right in front of a poster about Krabbe that made me feel even more stressed.
I tried to just ignore it, but that was difficult. It has been so easy to forget that she is sick, that she has a terminal illness…but this poster, and the other Krabbe babies we saw today, made it completely real, and reinforced our need for a miracle from God.
In addition to those stress factors, Tori wasn’t allowed to eat most of the day because of her MRI at 2pm, so I had a cranky baby who didn’t understand why she wasn’t being fed. This wasn’t the doctor’s fault – radiology had a strange policy for babies to not eat for 8 hours before their anesthesia. When Tori had her MRI at Hershey, because she is breastfed, she was able to eat up until 4 hours before the MRI. I should have just fed her anyway.
They started the evaluations and poor Tori was tired, hungry, and didn’t want to be put down (as usual), so it made it difficult for the team to assess her.
At that point, Dr. Escolar came in and we got to meet her. As I watched her interact with Tori and her team, I felt more calm. This woman cares deeply about these Krabbe children and so desperately wants to find a cure.
She decided that it would be a good idea to start Tori on a medicine to relieve the pain that she is in. Most Krabbe babies end up on two medicines (at least), and Tori is already on the first one. She said that we will see a totally different baby emerge and we will be able to really see what she is capable of doing once it takes effect. We will give her the first dose tonight.
Because Tori didn’t want to participate today (haha), we will go back in tomorrow to try again.
The physical therapist and Dr. E looked at Tori’s body and tested range of motion and other things. She then gave me a head-to-toe report of what she noticed. I am so glad that they are going to write it out for us because I can’t remember it all!
We then went down for Tori’s MRI.
We waited in the waiting room and explored the hospital while she was back there. We found a Rita’s stand in the lobby!
They finally let us come back to see her and she was surrounded by nurses talking about how beautiful she is ❤️😄 She was very calm and just laid there for quite a while.
We waited to be discharged and got back to the hotel around 6:30pm.
Then, we put the new medicine in her tube as directed, and it clogged it. We were unable to get it unclogged, and we didn’t have an extra tube with us (rookie mistake), so back to the hospital we went. It made for a late night. But, now we know she can eat well and have no issues with a clogged tube.
It was a long day filled with many different emotions. We will see what they determine over the next couple of days, but we know that a miracle is still needed.