All I keep thinking is, YAY... we get one more holiday at home together. It's one step at a time. Grateful just seems like such an understatement. But I can't find a more appropriate response to how I feel tonight.
Hopefully today will be the very last time Kayla has to get a Lumbar Puncture. So no more sedation! That is a very huge thing to check off the list. Den thinks it might be once a year still, but we are going to double check this.
So, I was thinking about all of this last night. Realizing that Kayla saw 6 specialists yesterday jolted me a bit. Think about that. Getting blasts of information, some critical (and some not so critical) results from 6 different specialists in ONE day. That's a lot to wrap your brain around. To think that we did that for 8 months. No wonder. Just no wonder! No wonder everyone is SO exhausted at the end of the day there.
Yes, I'm exhausted. Even though I'm here at home. My brain has had a lot to retain, learn, and process. Again. Working, trying to maintain a normal-ish routine for Anthony and not fall apart is hard. Especially when I can't explain that the knots in his stomach are normal. He doesn't understand what anxiety is, but clearly feels it. What else is there to do but keep putting one foot in front of the other and smile. We don't have much in this world that we can control, but how we deal with these situations is something that we can.
This is Miz Jackie! The sweetest face behind the desk at E Clinic
Kayla getting ready for her sleepy medicine before her spinal MRI and Lumbar Puncture
St. Jude has world famous bakers that retire only to find themselves baking for these amazing families and staff. Nothing like cheesecake when you wake up! YUM! Kayla is SO glad to finally be able to enjoy these amazing foods here when not so long ago she couldn't even look at them!
This is the awesome Miz Ashley. She works for Child Life and brings so many smiles to the kids by doing things like this. Just amazing.
Here is the incredible Miz Michaela. Kayla's Second Grade teacher at St. Jude. She has a heart of gold and if we lived there, we would be the closest friends. LOVE her!
Finally, Kickin' it in the Art Room!
Good night sweet girl! Tomorrow you get to play during PT and make them so proud of you for how strong you have gotten! I can't wait to see you tomorrow night. I don't know if I will be able to stop kissing and hugging you. Mommy misses you SO much!!! Oh, and your cat is a pain in the rear to sleep with! I don't know how you sleep with him every night! ;)