It's almost Christmas!

It is hard to believe that it is almost Christmas. It seems like this entire year just disappeared. It doesn't help that we spent the majority of it in the hospital, I suppose. Emily is doing well. She has been home for 3.5 weeks straight right now, knock on wood! She is having some more severe gagging and retching spells lately, and I think we are missing a key piece of this puzzle. I took some video of the spells for our GI. She starts out by gasping for breath, like her airway is shut. Then she gasps and gasps and finally gags and retches. I think it is possibly some sort of airway spasms, that we haven't realized before. I always call it retching when I talk to the Drs, and so they call it retching. The nurses in the hospital and walk-in clinic always ask me how long she's been coughing and I tell them "That's not coughing, that her retching". Duh. Perhaps I should have not thought I knew everything! LOL Anyway, I sent some videos to the GI and hopefully we can get her opinion and a referral to an ENT immediately. These spells have been longer and scarier lately, and honestly if we don't hear back from her within a day or two we may end up in the ER. We have a pulse ox machine that a friend sent us, and watching her O2 sats plummet during these events is pretty scary. Other than these spells, Emily is very stable. Her seizures are well controlled, and the small ones we do see are almost always stopped by swiping her VNS. The VNS has been awesome for her!

We went yesterday to my Grandmother's house for an early Christmas with her. We took lunch, and I made a fun Christmas cake. It was a great visit. I love seeing her with Emily. :)

Today it is raining ... our backyard is a mush puddle. Alex's parents are in town until tomorrow, so they are going to come sit with Emily for a while and Alex and I are going to go out. Souplantation for lunch, and the last Christmas shopping. It will be nice to go out, alone, with my husband! It's a super rare event in our house.

I hope everyone is doing well. I know I don't get on here very often and update. I miss blogging .... I have a goal of blogging more. Hopefully I will be able to! :)