Posting from Knoxville!

Wow, does this feel weird...sitting in my living room, at my house, on my couch and posting. I'm home for a day and will either head back to Nashville tonight or early in the morning. I cannot tell you what a rollercoaster my emotions are on right now. I was so happy to see Jack & Coop and to be in my own house, but I did not sleep well at all. I tossed and turned thinking about Lettie and if I should've just sucked up my own feelings and stayed at the hospital. But, on the other hand, I really needed to see my other kids and just "get out" for a little bit, take a breather. Before I left yesterday, she was having a good day. We didn't have any seizures, that I know of. She had some difficulty eating her lunch, but dinner went better. She went for a swallow study and they said she only aspirated liquid when she cried, but was able to cough it back up. They said her swallowing is uncoordinated but hopefully that will improve, along with everything else, in time. Ms. Mary, our nutritionist, brought us a new drink to try, Ketocal, that is vanilla flavored. Lettie always drank her bottle just fine at home but on the ketogenic diet milk isn't an option. She doesn't like water a lot and doesn't really drink fruit juices well either so our options are so limited. Ms. Mary has been making us bottles of heavy whipping cream, unsweetened apple juice, and a protein powder mix. It's not great, trust me, I try everything they give her first. But Mark's mom said she drank the Ketocal bottle much better last night so maybe we've found something she likes. The other new struggle we've encountered is now that the NG tube is out, we have to get all her meds in her by mouth. She is currently on about 7 meds that have to be crushed up and put in her either her food or bottle. We have to use tablet form meds on the keto diet, no flavored liquids. This is awful, Mark & I tasted the meds mixed up the other day & we were on the verge on vomiting several times. These struggles aren't near as bad as what we have faced, but they're struggles. Pray for her to continue to improve with her eating, return on blood flow to thalamus, movement on her left side, and no new complications. I hope so much that we will get to head to Atlanta Thursday morning. This is the time we really need the miracles to show up. The LONG road to recovery is just beginning. Pray that we will continue to see improvements above and beyond what they think she can do!