Doctor Visits Recap

It has been a busy week for my little girl. 

Yesterday she had her long awaited bilateral hip and brain MRI. We have been trying to get this test done for 4 months - that is how long it can take orthopedics and neurology to coordinate the test, so Waverly only had to be sedated one time. We should get the results sometime tomorrow. The brain MRI will most likely show continued loss of white matter and nothing new. The report I am most interested in receiving is for the hip. Waverly's right hip has been causing her a lot of pain the past 6 months. An x-ray showed some deterioration at the end of her femur. We are hoping the MRI will give us more detail and some sort of plan. We want to keep Waverly walking and mobile for as long as possible for her overall health.

Today we ventured down to CNMC for an Upper GI. She has had swallow studies, but never an UGI. I wasn't sure how she would do. She is compliant and never acts out, but she doesn't understand that we need her to be still or position a certain way. It took 3 of us, but she succeeded. She actually did a great job and enjoyed her orange cream barium shake. We should get the results in a few days. We had to get this test done before we are able to schedule Waverly's g-tube surgery. The pediatric surgeon wanted to get a good look inside of Waverly, specifically the stomach, to work out placement of the tube.

This afternoon our amazing SLP who specializes in feeding/swallowing popped over to take a look at Waverly. We typically see her every few months, as a consult to help us adapt to Waverly's ever changing swallowing needs. She has been working with us for about 2 years and is absolutely wonderful. I wanted to get her opinion on Wavey, before we move forward with surgery. We thought it was time, but I needed her confirmation. Upon the first attempt at a spoonful of pureed sweet potato, she noticed a marked change. Waverly was taking 10-15 seconds to swallow and rarely was it complete, meaning she was only partially able to swallow her food. The rest coated her tongue or was sitting on the back of her throat. Her tone has decreased and she is at a high risk for aspirating and developing pneumonia. She was working so hard to swallow such a small amount of puree.

We now know we are making the right decision moving forward with the feeding tube. Our SLP is contacting both our GI doctor and the surgeon to explain the urgency. We are hopeful we can get the surgery scheduled within the next few weeks. Until then we have to find some creative ways to get a lot of calories into her in a safe manner. Thank God for my Vitamix!!

Waverly has been her happy giggly self throughout the past few days. So often I dwell on how *I* feel. Today I was reminded how she must feel. I mean can you imagine losing your ability to swallow. And she can't understand why this is happening. She just rolls the food around, concentrating so hard to get her body to do something we never even have to think about.

This has been a difficult few days for Matt and I. Watching our little girl struggle to eat is so painful. We are grateful for the feeding tube option, so she can safely get the nourishment she so desperately needs. However, this is yet another step in her decline because of Sanfilippo.


Joanne Huff said…

it is so strange how parallel our journey has been in many ways, all the way down to the diagnosis date being so close. Sasha is suddenly going through much of the same this summer, and the hardest part is watching her confusion as she tries to *remember* how to swallow. I keep seeing her face in my mind when I try to go to sleep, her eyes get so big and confused when eating nowadays. We're here for you anytime you need an ear to listen! Lots of support coming your way from "The North Country" as you navigate through this process. XOXO Joanne

Popular Posts