Home Sweet Home

Resting post-surgery

The last four days have felt like four weeks. But the good news is that although Grace’s recovery was more difficult than any child should have to endure, she is now stable and at home.

Her tongue is securely attached to the roof of her mouth. The pressure is off her to have to swallow liquids, because they inserted a GI tube, so she is getting her nutrients via a tube in her nose that takes the “food” directly to her stomach. She will have 4-5 feedings a day that last an hour each. But she can sleep, watch TV, or play quietly while the pump puts the food into her tummy. (Plus we can put her meds in there, so no fighting us on taking those. Hooray!)

In three weeks time, the surgeon will detach the tongue, and her hard palate will be closed up, for good. Yea! But then she will have a separate surgery on her soft palate in the back of her throat, and that one is actually supposed to be more painful, and she can’t have a GI tube for that one. I’m trying not to think about what that is going to be like. One day at a time…

Headed to the actvity room to play

I am so grateful and humbled at all of the prayers, the wonderful messages, phone calls, and cards of encouragement. This journey will last until she is "free and clear" to resume normal activities and eat real food on August 11^th, so please keep them coming. J

So many of you have asked what you can do to help out. If you don’t live near us, see the above paragraph. J If you do, we would love visitors, as we will be at home the majority of the time. Grace can only engage in quiet activities, so someone besides me to read to her, do a puzzle, play a game, or do a craft would be wonderful. I keep joking that she is going to get sick of looking at my face. If you are a local friend with kids Jared’s age, it would be nice to get him out of the house so he can still have a fun summer. So play dates or trips to the pool would be much appreciated. I will return the favor when Grace is healed up…I promise!

Thanks for reading. Gotta run…

At home after a bath and holding her new kitty, Tori. :)