Made of Gray

Three Weeks Home

Raising the Rare ChildHolly D GrayComment

We've been home now for several weeks and we have fallen back into our routine... if you want to call it that. We don't have a solid schedule and that can make the weeks fly by. 

Caleigh went to a new eye doctor and got a new prescription. A little more near sided and a little more astigmatism. Her new glasses are on the way. 

We did her every 6 month dentist appointment. Everything looked great. 

We went swimming for the first time last weekend. We don't plan on stopping until we are headed to Boston. 

The quick update on Boston is that Caleigh's vitamins and minerals looked much better than they were expecting. We've increased her fluid amount and just yesterday upped her calorie intake to 24cal. We will be increasing her calories over the next couple of weeks and hopefully she will tolerate the change.

If she can adjust to the increase, we will plan on going to Boston in one trip. Head up for pre-surgery testing and then go ahead with the surgery in the same visit. This could be June or July. We aren't certain on timing yet. Caleigh wouldn't need to be on TPN before her surgery in this scenario. 

We're in the process of getting a few supplements compounded and changing home health companies. Boston has been incredible through all of the hiccups in transferring Caleigh's medical care. They get a huge thumbs up so far. 

So the plan is to keep increasing calories, swim and play as much as possible, and truly enjoy our time at home. 


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