Another trip to the coast, another round of tests

We are headed back down to the coast tomorrow for some testing and it always feels a bit bitter sweet. One of the tests we are doing is long awaited so I am happy to finally have it done BUT we haven't had much luck with testing in the past. My little peanut has been poked and prodded more in her first year of life then I have in my very long life (I don't want to age myself too much)! With each poke comes the hope of finding out what is happening only to get more of the unknown.

Last trip down, we met with medical genetics. We learned about a new condition our daughter has which requires diet modification (to a very limited diet as is). I feel like I'm putting together a puzzle that I keep finding new pieces for but I can't figure out how to put the puzzle together. As a medical parent with a sick kiddo and no real cause, I am constantly searching. With every piece of information comes hours on the internet (and yes, I know I shouldn't be checking Dr. Google). 

When we met with medical genetics, we applied for funding to do some advanced genetic testing (which is sent to Finland). They shared that funding for this testing has been substantially cut back in recent years and tried to manage our expectations of getting approval. We received an unexpected call yesterday letting us know that the testing was actually approved - YAY! Super exciting news. 

We are staying at the Ronald McDonald House this week and get to do our first official delivery of sponsored care packages. I can't wait to share photos!

I'm going to leave my blog by saying with rain, comes sun. I have some pretty amazing and bright things happening this week even though we do have some tough days coming. I can't wait to share the sun with others!

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