Gracie had a horrible night. Starting at 11:00 p.m. she was up every 30 - 60 minutes crying and tossing and turning, we would just get her calmed down and back to sleep only to have it happen all over again, all night long. She finally fell into a deep calm sleep at 4:00 a.m. However, since she was scheduled for an EEG today, we had to wake her at 4:30 a.m. At this point she was really hard to wake up. Due to the lack of sleep she was a grumpy little gargoyle this morning.
Daddy took off work to take Gracie to her EEG. It took him and another woman to hold her down while they put the leads on. She screamed so loud and high that the technician indicated she had never heard screams at that decibel before. She verbalized "no" quite a bit through that procedure. Once the leads were on and she was calmed down, both her and daddy fell asleep. This is a good thing, as they need to capture brain waves while she is awake and sleeping.
After the EEG, Gracie and daddy came to visit me at work for a short time and showed off her walking skills for a few friends. Then it was home to eat lunch and take a nap before her neurology appointment. I met up with Jeff and Gracie at her neurology appointment. Before the appointment, she met up with some friends at the desk and one of the lab technicians that she fell in love with when she was having blood draws twice a week. They treated her like she was a princess. One of the desk staff had a mylar birthday balloon with a lion and giraffes on it. Gracie was admiring it and this individual gave it to her to keep. Gracie was ecstatic!!!!
Gracie loves her neurologist (as do we). Dr. N. walked in the room, Gracie removed her hand from mine and tucked hers inside Dr. N.'s hand and walked to her desk with her and sat on her lap. That is where she stayed for the majority of the appointment. We got GREAT news! NO SEIZURE ACTIVITY!!!!! The meds are doing the job and there was no trace of any seizure activity at all. Gracie's background waves are still slow, which is no surprise to us. That would go along with her Sotos Syndrome and resulting developmental delay. The normal two year old has 6 to 7 waves per minute, Gracie has 3 to 6 waves per minute, so she is hitting normal at times. Dr. N. examined her and we talked through what skills she has and she was assessed at a 15 - 18 month old level. We are ecstatic with this news as well. She is 25 months old, her learning pretty much stopped due to I.S. for 3 months and was slowed way down by meds controlling the I.S. for an additional 3 - 5 months. To be at a 15 -18 month old level is fantastic considering all of the odds that were against her. At all of our previous appointments our focus was seizure control and this appointment we got to focus on what we believe the future will bring for her. Time will tell for sure, but we are optimistic!
After we were done with our neurologist, who incidentally stayed and talked to us through two appointment slots because her last appointment for the day was a "no show", we went to see the lab technician who asked us to stop by on our way out. She had a stuffed animal fish that she gave to Gracie. We also met another little girl who has seizure issues and seemed to be struggling quite a bit, although it sounded like she was making progress as well. No matter how challenging life can be at times, you realize that someone always has it worse than you do and that we need to be grateful for all of the gifts we have been given. We have been so blessed. I also strongly believe in the power of prayer and I thank all of you who have been lifting our little cherub up in prayer...our prayers were answered today...once again.
Tonight after supper Grandma & Grandpa D stopped by to say goodbye. They have been in Rochester for the summer and are ready to head south before the snow flies. It has been good for Gracie to get to know them this summer.
Gracie is now sleeping and after the interesting night last night, I think I am going to go join her.
Thank you again for all of the prayers. Words just can't express our immense gratitude.
Love,
Lisa, Jeff, and Gracie
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