Gracie had another great night and slept in until 7:00 a.m. When she awoke she was in a great mood and that was the theme for the day. Gracie was still in her jammies when Emily, ECSE teacher, came to work with her. Gracie had snuggles, hugs, and lots of smiles for Emily. The rest of our morning consisted of errands...going to the post office, the floral store, the mall, etc.
By the time we got home Gracie was almost too tired to eat lunch. Please note, I said "almost". She ate a pretty good lunch and then went down for a two hour nap before we headed back to the clinic for afternoon appointments. Her first appointment was physical therapy. Gracie worked hard, she worked on standing up by herself, climbing stairs upright, and did some time on the treadmill. As a reward for doing such a good job, she got to go down the slide two times. That was a hit.
After PT she had a follow-up appointment with her pediatric neurologist. Gracie was very happy to see Dr. N., gave her a hug, and insisted on sitting on her lap. Gracie weighed in at 38 lbs. and we weren't suprised to see that she had grown taller. She is now 37 inches tall. Gracie is doing great from a neurologic perspective. We got the go ahead to start weaning her from Vigabatrin over the next five weeks. With that wean, we will also increase her Topamax. We are thrilled to say goodbye to the Vigabatrin -- if you remember this is the med that they don't like to keep anyone on for more than 6 months as it can cause peripheral vision damage with long-term usage. Gracie has been on it for 4-1/2 months, so we are anxious to begin the wean.
The other good news we received was that we don't need to do a follow-up EEG. In January when we found out the I.S. was gone, her EEG also showed a very slow background. We know that Gracie has delays with the Sotos Syndrome, but this was showing even more slowing of the brain activity. We were to do a follow-up after 6 months when she had been off of most of the meds. Since Gracie is making so much progress and is learning new things, both cognitively and with motor skills, there is no need to do the follow-up EEG. YAY! YAY! YAY!!!
Gracie was so tired after all of her appointments that she fell asleep on the way home. I took her out of her car seat and carried her into bed without her waking. I let her sleep for an hour before waking her at 6:45 p.m. I think she may have slept the night through had I let her, but she needed meds and supper. Gracie and I played into the evening and she finally fell asleep again about 9:30 p.m., but it is a restless sleep. Hopefully she'll have a good night.
I had a great two days off with Gracie. Although we had a lot of appointments and did alot of running, we also had many smiles, laughs, and chances to play and read. It will be very hard to go back to work in the morning.
Wishing you all a great evening and enjoy the sunshine!
Love,
Lisa, Jeff, and Gracie
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