We had an early morning at Children’s Hospital. Sadly we learned our neurologist is moving to Florida 😭😭😭! I can’t deal with this! Two pediatricians have retired, our g.i. referred us to his colleague, our neurosurgeon retired, and we phased out of the early intervention therapy and had to say good bye to all those therapists! Ughhh!

On a positive note, we don’t have to go back for six months and we are pushing back the repeat MRIs as far as possible. We will monitor her for neurological changes at home and call when we see any. The scary thing about her condition is the reoccurring subdurel hematomas that can happen and brain atrophy. They’re going to monitor progression and were very pleased with her weight gain! 😌👊

This lil’ one.

I told her it was really hard. It’s kind of isolating.

It’s hard to not be able to tell everyone about her health condition because people automatically assume it’s something contagious by the way that it sounds so we have to just not talk about it and that makes me upset. It’s also frustrating when there’s not a lot of medical literature on it because it isn’t common so the more we try to learn about it the more frustrated I seem to get.

Either way. Today was a good day concerning my little one, we’ll call it a win, and for that I am thankful.

Oh and she has a new lovey….I thought she named, “Cake”, but apparently her name is “Kate” and Kate smells like grape and she’ll ask you to smell the grape lovey…it’s not weird?! 🤣 🍇

“Say ‘Hello Kate’ and smell her!” That’s what we’ve been listening to all day and it’s the funniest thing ever. It seriously sounds like she’s saying, “Say “Hello Cake”, and “I love cake”, and “Do you want to smell cake?” It’s so funny!