Thursday - At Home With Mom

Gracie had a pretty good night, but awoke with explosive diahrea, it was very evident she didn't feel good, only wanted to be held, and wanted absolutely nothing to eat. After a while I finally convinced her to eat just enough soy ice cream to get her seizure meds down. That was the extent of breakfast. The nasty diapers continued and I'm pretty sure she had a stomach bug and this was not yogurt causing the problem as I first suspected.

Gracie wanted nothing for lunch and she didn't want much to drink either. She did have a bath and was quite happy in the water. All in all, she wasn't unhappy, she just was needy and wanted to be held and snuggled. Gracie fell asleep at 11:00 a.m. and slept until 1:30 p.m. I snuggled in bed with her til 2:00 p.m. and then convinced her to eat a few crackers and drink a little Gatorade. After nap, I could tell she was feeling a little better.

Then we headed to the clinic for Gracie's ear tube recheck. She is scheduled for surgery on June 9th to get the tubes removed. It was a hard decision for us as the tubes are out of the drum, but we've done the wait and see game and they aren't falling out on their own. They bother her quite a bit and she pulls and rubs at her ears in frustration. I think the biggest deciding factor is that the doctors would not be able to see if she has an ear infection or fluid on her ears as the tubes are in a position that block the view. If you'll remember, Gracie's initial ear tube surgery was when her seizures began. I've talked with Gracie's neurologist and we need to make sure she has her meds that day. We have to change to a tablet that day so we can dissolve them in water as she can't have any food with anesthesia. They will also have to have rescue meds ready to go in case she would seize coming out of anesthesia. We would appreciate any and all prayers for Gracie's health and a good outcome.

We also had a blood draw this afternoon to check her Ferritin levels. Low levels of Ferritin were causing very restless legs in her sleep. I've noticed improvement since we have been giving her a vitamin with iron, so I am optimistic regarding these results.

Gracie was her social self at the clinic and made many new friends. We walked into the elevator at the ramp and two very nice women smiled and said "hi". She was instantly attentive and then when they ended up being on another elevator with us, she had to hold one of their hands. Then to the lobby at ENT, we connected with an elementary education reading teacher and her mother. The teacher had an iTouch. Gracie was intrigued and pretty soon she was playing games on it and listening to music.

She was happy to see her ENT physician until it was time to look in her ears. We had to hold her down. I think it took three of us. Then off to the lab for the blood draw, which was done by our dear friend Anita. Anita drew Gracie's blood every week when she had I.S. and believe it or not, Gracie came to love her. Gracie still loves Anita and although she wasn't thrilled with the blood draw, she did pretty good. Actually I think the issue was more that she had to lay down and be held.

Then we came home and Gracie ate a pretty good supper of pasta and chicken in a mild broth, some peas, some peach smoothy baby food stuff that I convinced her was yogurt. Then a little later she helped me eat my Chinese food.

Gracie was a very good girl today. We had very little tantrum type behavior, she listened, was helpful, including setting her own place at the table for supper.

She is sleeping now, but seems quite restless. For those wondering minds...it's Dora the Explorer jammies tonight. :)

Love,
Lisa, Jeff, and Gracie