For my girls, feeding tubes have meant life... literally. We know many people with feeding tubes who can also eat orally too (not enough though to sustain because of different medical needs), but for Jilli and Lydia that is not a safe option, so without a feeding tube they would have no way to eat.
Many people's only experience with feeding tubes are when elderly loved ones are in end of life care, therefor they equate feeding tubes with death. For hundreds of thousands of people that isn't the case. 40% of all American's with feeding tubes are children. Many people with feeding tubes have them for many years and lead very active lives. Feeding Tubes are not just for end of life comfort, but they can also give someone years of amazing life!
Here are pictures of the girls LIVING!
Our old oxygen company FINALLY came to pick up the 38 tanks in our entry way. I was not expecting them to come yesterday (they were scheduled to come today) but I am happy it is all gone!As long as they do not do any more crazy billing, that chapter is over.
I also spoke with NIH. Our medical coordinator has been in charge of reading EVERY medical document they have on the girls this week and putting together an "overview." As of yesterday Jillian's overview was 18 pages long! I can tell she is really reading everything because she called me with questions about an ER visit when Jilli was 2. I am still waiting to hear back from our travel coordinator with my questions. I am trying to stay calm but last I heard from her my name was spelled wrong on my airplane ticket so some things really need to get taken care of asap!
To celebrate Feeding Tube Awareness week, Jilli and I worked on Tubie Friends! I have been volunteering with FT for many years as a way to give back to the feeding tube community. I made a lot more before Lydia was born but am hoping to continue to be able to make more as she gets older.
Lydia also took a 3 hour nap yesterday and then slept good last night. That isn't like Lydia at all, but I am hopeful it means she is growing.
Today the girls have PT/speech. We missed last week due to the weather and are about to miss 2 weeks while at NIH. However things are a bit more complicated today... our therapy place had a water pipe burst over the weekend with the crazy weather here trashing the building. Our center is owned by a larger company so they are moving everyone from the center we are at (a pretty large place) into another center that they own (so two centers that were both already full sharing one center...) we will see how this goes. I am thankful though that the girls get to see there therapists before we head out even if it means a longer drive (we have to drive up to the campus our hospital is on)
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