Last week was busy for Halle as she traveled to Fargo and St. Paul for several appointments. Here are the highlights. 

Halle “passed” a swallow study where she was monitored swallowing some food via x-ray. She swallowed safely during the test, so she can now start working on taking small bites of purée. Anything eating besides licking has been on hold since she likely aspirated in the fall. Her interest in food has been increasing and she really enjoys tasting, so we are excited to have the green light to keep making progress. 

She met with pulmonology and neurology, and both were pleased with her gains in strength and coordination. Pulmonology says good job not pushing her hard with weaning on the vent after all of her illnesses during respiratory season, and neurology says to get to work on weaning because she is getting strong 😆 Halle had started bipap trials for 1-2 hours a day the week before her appointments, and she has done great with it so far. The strategy for weaning will be to increase bipap each week by 2 hours a day as she tolerates. We are so excited to be able to begin slowly working down on vent support! ENT would have liked to upsize her trach, but pulmonology said to leave her alone since she is doing so well 😆 (We have to laugh at all of the little disagreements between providers!)

She did well with an EEG testing for seizures, which I guess she is at risk for with vitamin B deficiencies. Neurology says after the test that there is nothing to worry about!

With Physical Medicine and Rehab, we talked about her ankles turning in with standing and her hesitancy with lifting her right arm higher than her shoulder. She may need some different ankle supports for floor time. 

Halle will also visit Mayo at the end of May to have some hearing tests. With RTD, hearing loss is usually one of the first and most severe symptoms, but it wasn’t for Halle. Considering how severe her other symptoms were, it seems strange that she can hear as well as she can. She follows instructions like “clap” or signs words that we say, but she is only speaking a couple of words consistently. There are a ton of factors that could be impacting her speech. It’s very hard to tell where her hearing stands, so hopefully these tests will provide some answers. She has had a couple of hearing tests, and they both indicate that she has some hearing loss, but they did not specify how much damage there is. Hopefully her next appointments will indicate the level of hearing loss and give us a clear answer as to whether she needs surgery for CIs. 

It was so nice to hear from others about how well she is doing. We see her progress every day and have our own perceptions about her progress, but it was very reassuring to hear her neurologist say that he is very hopeful for her future and he was pleasantly surprised with how well she is doing. We know how much healing God has done in her little body and that He has heard our prayers. Thank you all for continuing to pray and for all of the support along the way!