Gracie had a mostly good night last night. I awoke at 1:00 a.m. and was pleasantly refreshed as I had slept without being woken even once. Gracie got a little restless around 3:00 a.m., but snuggled in til about 5:45 a.m. I layed down with her for a bit and she fell back to sleep until 7:30 a.m. She awoke in a GREAT mood. I saw lots of smiles.
Gracie and I hung out today as she had a number of appointments. We headed to the clinic on some pretty nasty snow covered roads. Our first stop was Auntie Sheila's office to say "hi" and make sure she made it in okay. We couldn't stay long as we didn't want to be late for her ENT (Ear, Nose, Throat) appointment. We met with an ENT surgeon to check on Gracie's ear tubes. She has been pulling at her ears alot and has been acting like they are bothering her. The ENT surgeon couldn't confirm that the tubes our out of the canal as there is too much wax built up, but she thinks they are out. Our options were to head to the O.R. and let them clean out the ears and remove the tubes and perhaps put in new ones...or use ear drops for a couple of weeks to soften the wax and encourage it to come out on it's own, so we can see what is going on for sure. This method may not work, but we chose this conservative approach for starters, as it was the ear tube surgery that jump started Gracie's seizures. It makes me nervous to go down that road if we don't have to.
We also shared our concern about how Gracie has lapses of breathing while she is sleeping. She checked Gracie's tonsils, talked to us a bit, and felt that we needed to have a sleep study on Gracie. There is one type of sleep apnea that is caused by obstruction (tonsils, adenoids, etc.) and another by the central nervous system. This isn't all that uncommon with kids that have neurologic issues. Our pediatrician also confirmed that sleep obstruction and other sleep disorders are characteristics of many individuals with Sotos Syndrome.
On March 3rd we'll do a sleep survey, have a hearing test, have a return visit with the ENT surgeon, and end the day with an appointment with Gracie's neurologist.
Gracie and I headed home for lunch (daddy went back to work) and then a nap. She slept for 2 hours and 45 minutes. Woke up in time to have a quick snack and then we headed back to the clinic for a physical therapy appointment. Gracie's skills are coming along nicely. She was very moody today though. The poor intern got head-butted during a tantrum and her hand pinched by the wheel of a stool that got pushed. She took it all in stride, but I felt bad.
We headed home and Gracie decided that all she wanted for supper was pears and Gatorade. Everything else was left on her plate. Actually, it wasn't left on her plate as her plate had Tinkerbell on it and she wanted to see her better. So her food was dumped on the table. Gracie's appetite is definitely not back to normal yet.
Gracie had an enjoyable bath, splashing everywhere. Jeff and Gracie had splashing wars. Gracie LOVES this. Gracie was in a very good mood after her bath and we finally put her to bed at 8:30 p.m. Sweet dreams little one.
Love,
Lisa, Jeff, and Gracie
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