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 πŸ˜„

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

3 thoughts on “Pittsburgh, Round Two continued…

  1. I just love the pics of daddy at the ER being silly and amusing you both while Tori naps! Both if your attitudes speak volumes of the Spirit of Peace that you are walking out! I hope all of your followers that aren’t believers yet take notice of this also and yearn for it and the One who gives it!
    Your family is continually in my prayers! You two are such awesome parents! I hope you hear that often so you never have a doubt! You are truly warriors and definitely not whiners πŸ˜‰
    Prayers and love! Give Tori a snuggle for me. Each time I see those sweet little baby cheeks I want to just cuddle cheek to cheek with her. (strange thing to say since I don’t personally know your family I suppose. I’ve kept up with all your blogs so it feels like we’re old friends.)


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