Today was our last day in Pittsburgh and it was a fairly easy one. Tori had lab work to check her potassium levels first thing this morning. They have stabilized … Continue reading Pittsburgh, Round Five: Day Four
Pittsburgh, Round Five: Day Three
Today Tori had a Behavioral Audiology evaluation and a chest x-ray. It was a pretty easy day. For the audiology test they played sounds and made noises to see how … Continue reading Pittsburgh, Round Five: Day Three
Pittsburgh, Round Five: Day Two
Today Tori saw Dr. Escolar and her team and had her MRI. Dr. Escolar is pleased with how Tori is doing and said our next appointment will be in six … Continue reading Pittsburgh, Round Five: Day Two
Pittsburgh, Round Five: Day One
Tori had two appointments today: ophthalmology and audiology. The ophthalmologist dilated her eyes to evaluate the anatomy and we will get the results later this week. Tori always makes … Continue reading Pittsburgh, Round Five: Day One
Pittsburgh, Round Four
Today we had our quarterly visit with Dr. Escolar in Pittsburgh and things went mostly well.
Overall, Tori is still doing really well given her early-infantile form of Krabbe. She even improved in her visual/cognitive understanding from a 2-3 month level to a 5 month level! Vision therapy has been helping!
However, as we suspected, Tori’s blood oxygen levels aren’t consistently where they need to be. They put her on .25L of oxygen while we were here to see how her stats improved and they went back to normal.
Dr. E suspects that her breathing has been affected by her distended belly (she’s had a lot of gas in the past week) and by a need for deep suctioning (for which we didn’t have the correct supplies until today) to clear more secretions from her airways.
They did a belly x-ray and found that her colon was indeed enlarged, so we will begin doing a few different things to relieve the gas. They also did a chest x-ray noted that her lungs have some atelectasis, so we will begin treating that immediately with a nebulizer, oxygen, and some other therapies.
Tori will also begin having .25L of oxygen at night, just to help her out. Dr. E believes this will also help her sleep soundly FOR THE FIRST TIME because her body won’t be working so hard to breathe. Mommy is VERy excited about this prospect. This will also give her more energy during the day.
We knew some oxygen would likely be coming soon so we weren’t surprised, but of course we’d rather her be on room air for longer. At least it’s only at night and it’s a very small amount just to help her heart and lungs work less.
Dr. E will be tapering Tori off of baclofen (a medication for muscle tone) because her tone is so good and because she thinks that will also help with her breathing. It will be nice to remove a med from her routine! Tori had been on the smallest possible dose of baclofen anyway so it won’t be a drastic change for her body.
Because Tori was her only patient today we got a lot of face time with Dr. Escolar and had the opportunity to discuss many things with her that we hadn’t been able to before. We learned a lot and feel more prepared for future decisions.
This was a quick trip this time and we are back home already. Each visit brings added therapies and treatments and we’re more than ready to have nursing assistance in the home. But, for now, we’ll continue doing things on our own for as long as we can.
Please pray for Tori’s belly and for her lungs – we hope we can treat these successfully at home and not in the hospital.
Pittsburgh, Round Three: Day Two
Today was a very busy day and we are all so tired. We started with Tori’s vision and physical therapy evaluations at Dr. Escolar’s office. We then ran … Continue reading Pittsburgh, Round Three: Day Two
Pittsburgh, Round Three: Day One
We traveled back to Pittsburgh last night for our third visit to Dr. Escolar and her clinic. Such a beautiful sky! We arrived at our hotel around 9:45pm, and … Continue reading Pittsburgh, Round Three: Day One
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 … Continue reading #ToriTuesday Update
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 … Continue reading Pittsburgh, Round Two continued…
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: … Continue reading Pittsburgh, Round Two #ToriTuesday