Made of Gray


Tooth Fairy, Waiting and New Shoes

Raising the Rare ChildHolly D GrayComment

Yesterday Caleigh lost her 4th tooth. Years of grinding her teeth made it tiny, but the root proved to be large. She excitedly woke up this morning four quarters richer. 

The 5th, extremely loose tooth will be following very soon. 

Children's Hospital Pittsburgh has all of Caleigh's files that they need. They are submitting everything to insurance for prior approval and then we will be good to go. The ICARE team meets in the clinic on Thursday afternoons. This will be totally outpatient, so we at least know what day of the week we will be there for consult. 

Boston Children's Hospital hasn't returned my phones calls, but they are currently enduring a record breaking frozen wonderland at the moment. I'm not sure when we will hear from them or if we will be able to get all of Caleigh records and insurance approval completed in enough time to visit them at the same time as Pitt. 

Eric and I really wanted to visit both hospitals to be able to make the best decision, but we also don't want to wait too long. We would rather be proactive about Caleigh's situation instead of reactive. The longer we wait the more narrow that window could potentially get. 

Caleigh's Botox injections last month changed up her leg tone enough to need an adjustment on her AFOs. The adjustments made her braces wider and taller. All of her shoes are too small to wear now. So yesterday we went shoe shopping, again, and finally found some Adidas shoes that work. They are a classic style that seem wider although they aren't considered wide. Right now her AFO shoes are 6 sizes larger than her regular shoe size. It's crazy, but they don't look terribly out of proportion to her body. She is so close to needing new AFOs that we went ahead and got the next size up anticipating a larger AFO in the next few months. 

Caleigh has been feeling much better since we have stopped all the testing of the past month. Her gut has finally calmed down and she seems more comfortable. She has been sleeping through the night which we are completely thankful for. 

The past few days have been pleasant and sunny. We've been enjoying as much sunshine as we can soak in knowing that we will be joining our freezing neighbors up north very soon! 


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