#ToriTuesday Update

Tori has been very alert and content this past week! We are so thankful to know that she is comfortable.

Tori was weighed and measured today and she hasn’t gained any weight in two weeks; we will be increasing her calorie intake slightly to see if it makes a difference.

  
We are heading to Pittsburgh this evening for two days of appointments and a visit to the zoo! 

We will meet with Dr. Escolar in the morning and then spend the day at the zoo and maybe some other adventures.

Thursday will be filled with evaluations and tests, including an MRI. 

Our prayer for the past six months has been that this MRI would show improvement, and we continue to pray along those lines.

We will post pictures of the zoo and the giraffes! 😄 So thankful to all who made this possible.

Pittsburgh, Round Two continued…

Last night we ended up being in the ER for nearly three hours just to have her g-tube replaced (wish we had received our spare tube by then! We could have done it ourselves).

    

     Thankfully we didn’t have far to go since we are staying at the hospital’s Ronald McDonald House (which is SO amazing!).

Today was a busy day at Dr. Escolar’s office. Tori had several evaluations and did well.

She got to meet baby Zander, another Krabbe baby from Erie. Zander has Late Infantile Krabbe (Tori has Early Infantile).

  
We were also given a blanket that friends of another Krabbe family made for patients to have. Tori’s has a giraffe on it.

   
 Her clinic visit started with a physical therapy and speech language pathology assessment. Tori did not like that very much. She did some tummy time for the first time in a long time but didn’t hate it as much as she used to.

   
               
She then was evaluated by Dr. escolar herself, along with two doctors (from India and Hungary) who are learning from Dr. Escolar this week. 

When we asked Dr. Escolar how she thought Tori was doing, she said that Tori is doing better than she would have expected given the last visit and the MRI images. 

Better than she expected.

She agreed that Tori is stable and is doing well. She said she is developmentally at about a six month level and gave us some suggestions of things we can do to stimulate her. Tori is still learning even though she cannot show us, so we will continue to talk to her, read to her, etc.

We will be increasing one of her meds simply because of her weight gain – more weight equals less medicine per kilo, so we need to increase it a small amount. 

She was happy with Tori’s sucking strength as well. We are so thankful for the SLP at Hershey Medical Center because she told us to make her use a pacifier as much as possible so that Tori would not lose her sucking and swallowing reflexes.

We then went to audiology where they tested her hearing, and she passed. We had no doubts that she can still hear but this confirmed it.

   
 They then let us use a room to feed Tori and let her nap a little bit because the morning had exhausted her.

  
After audiology we went to occupational therapy to have Tori fitted for splints. The splints will help keep her hands open and not clenched. We know that her left thumb hurts her when we move it and having splints will hopefully ease that discomfort.

   
  

                

Tonight we will get to visit with some friends here and then we will take the early morning train back to Harrisburg tomorrow 😄

It has been a good visit, but I am glad these only happen every three months.

Pittsburgh, Round Two #ToriTuesday

What a day!

We took the train to Pittsburgh this afternoon for Tori’s three month follow-up appointment with Dr. Escolar tomorrow. 

The train ride went smoothly except for one thing: her g-tube fell out not long after we left Harrisburg! 

For those who aren’t familiar with g-tubes, they are held in place by a balloon that is inflated with water inside the belly. If the balloon fails, the tube comes out. 

Brennan and I tried to reinflate it and discovered a hole. Thankfully he was able to get it back in so that we could feed her, but we are currently in the ER at CHP for a replacement tube. 

The frustrating thing about all of this is that her spare g-tube will be delivered to our house tomorrow. If we had received it earlier we wouldn’t be in the ER now because we could have replaced it ourselves. And, our last trip here involved two NG tube replacements…but I digress.

  

We are staying at the Ronald McDonald House here at CHP and our room is so nice! The best part is that we will simply take the elevator four floors down tomorrow for Tori’s appointments!

Brennan was unable to come in February so I am so thankful that he is with us now. We will receive so much information tomorrow and it will be helpful to have him here to remember it with me.

Here are some (out of order) photos from our train ride. Tori did so well!