Tuesday night

Well, the thru the night feeding went fine until 5 am when all the alarms went off because the tube had kinked when she rolled over on it! She was eventually able to fall back asleep, but it is a struggle for us older folks!

The morning started at an eye dtr appt. We were very concerned with her eyes and the light sensitivity and wanted to address it. We saw Christian Carter, he is awesome, and he gave her a clean bill of health. So, that leaves us with the light sensitivity purely being a psych issue or perhaps this magnesium deficiency. I think for now I fall in the middle of the two.

Then we spent a lot of time with our visiting nurse. It's funny, when first talk of the feeding tube came about, I said to Mike that I didn't care what it cost, that I wanted a nurse to come for every feeding! Well, she just swung by to "check on us" and said that we were fine, so I guess my perception of a visiting nurse was way off! Apparently, this is an area that God wants to grow me in!

We also decided today to move our appt at CHOP. I really don't want to take her up there on a feeding tube, plus we felt like she had just been through all this trauma at UVA and wasn't strong enough for the trip. We will definitely still go back and see Dr. Verma, do the bone scan, etc., but at a time that is better for her.

We also started amitriptyline. With all we have read and been told from many dtrs about the gut being the second brain, her struggling neurotransmitters, etc., we just felt like she needed a little help to get over this hump mentally. All dtrs (Richmond, Philly, UVA) agreed with this decision. We will also continue counseling.

When she feeds, she is even more irritated by the tube and moans/cries louder and insists on my hand being on her stomach during this time. I always pray through feedings (well, when I'm not totally exhausted) and I desire that my hand would be the healing hand of Jesus lying on her stomach.

How are we doing folks ask? Tired...physically, emotionally, spiritually. At times I just almost feel numb because of how long this road has been. At times I feel encouraged and totally uplifted. It really depends on the moment. My heart YEARNS for her to talk, laugh, sing and play again...please pray that she wouldn't totally shut us out!

No progress today with soft foods. She only took maybe 10 sips of water all day, she is really resistant with the tube.  The visiting nurse said that some kids just won't eat with it in...so again, pray for wisdom...when do we take it out to see if she is ready to eat?

A BIG THANKS to Stuart and Tom for clearing some trees that needed to be taken down in our backyard. Thanks for serving us in this way! I think it was good for Mike to get outside and have some "mantime" as well:)

HUGE THANKS also to everyone at ACTS who sent the awesome posterboard card and the sweet cards and gifts! She hasn't had the energy to read it all yet, but I know it means a lot to her to be remembered! Grateful for your prayers and encouragement ACTS friends!

In Christ,
Lori