What has tube feeding meant for you or your child? How have they grown, developed, thrived? What are they able to do because they are powered by tube feeding?
Tube feeding has meant living. Before Jillian's feeding tube she was so tiny and puking all the time. She was falling behind on her developmental milestones because she was using all of her energy to try to eat. Tube feeding has meant getting nutrition the best way for her so that her body does not have to use up so much energy trying to eat. It also means that there is less stomach contents ending up in her lungs which helps her lungs. I don't even want to think about where we would be if it were not for her feeding tube.
Jillian is able to live because of her feeding tube!
On a side note, we got to see a neurologist in Madison today. I really liked this doctor. He went over Jillian's muscle biopsy results in a way that no one had before, which I really appreciated (I don't want the cliff notes version of what it said, I want to know the details so I can best help my kid). He thinks he has an idea of what Jillian has however he did not make an official diagnosis because what he thinks it is does not fall under the neurology umbrella. We have contacted Jillian's ped to figure out the next steps. Once I know more I will share more, but I want an official diagnosis before I put it out there, but I am really hopeful that we are pointed in the right direction. I have spent my night reading all that I can about it and it does look like this might be the missing piece. I am hopeful we can get into who we need to quickly so we can confirm it. I am very grateful for the doctor we met with today, he was very through and asked questions we had not thought about before and noticed things about Jillian that no one else had picked up on before. Right now I am just trying not to get my hopes up too much that we figured this out until we have the official diagnosis (also if this is it, it does not come with a "cure" but it would at least give us a name for it)
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| Jilli decided to put on my pajama pants tonight |
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