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We have been enjoying many happy days over the last month. The increase in Gabby’s Trileptal seems to have helped the disorientation and shakiness she was having upon awakening. We completed a 72 hour ambulatory EEG last week but do not yet have the results. We noted one episode during the recording when Gabby was shivering slightly upon awakening. She was still responsive and her diaper had leaked so she was damp. I guess it wouldn’t be out of the question that it could have been some ordinary shivering on a cold morning after just awakening in damp PJ’s. However, once you involuntarily become seizure experts as we have, something like this is definitely considered suspicious. So we will wait and see what her little brain waves look like these days.
Outwardly, Gabby has been behaving in the most encouraging ways. She is counting to ten, identifying letters and colors, singing the lyrics to many songs, using the mouse to navigate websites like www.starfall.com, and she loves “reading” books.
Recently we have taken a much needed break from therapy. Gabby aged out of the Early Intervention program and we are waiting to attend her first IEP meeting next week to find out what kinds of services she will be offered through the preschool program. Unfortunately the preschool program requires that you drop your child off for services unless there is a medical reason that would make it unsafe for the child to leave their home environment. This has been torturing me. I really want what is best for Gabby. I have so many mixed emotions. I guess if money didn’t play a part in any of this I would just hire private therapists to come into the home throughout the day and work with Gabrielle. Realistically this isn’t going to happen. So I’ve begun to consider what we can offer her at home, what we can afford privately, and what the preschool program will offer. I’m praying for very clear direction and that we would have complete peace with our decision.
Enjoying one happy day at a time!
Kelly
Gabrielle and all the rest of us had an amazing Christmas! Gabby loved attending the Christmas Eve service at our church. In fact she was so full of spunk that evening I had to bring her to the back of the sanctuary for a while so we didn’t disturb others. She was calling out the name of every child she saw and saying “hi” to them. Following the service she ran around with the other children and had a ball! You would have never guessed she had been “off” a few weeks earlier.
Christmas morning she received an Elmo Live doll. When Gabby opened this gift she was thrilled. She thought Elmo had literally come over to play with her. Unfortunately, Makinley was equally intrigued by the little red guy so there were a lot of tears when Gabrielle refused to share her new friend. We hid Elmo for awhile when the girls went down for their naps.
Later on in the day Uncle Russ and Aunt Nancy came over which Gabby was super excited about. If you asked her, “Whose birthday is today?” she responded, “Jesus”. She loved singing “Happy Birthday” and helping to blow out the candles.
The following day we celebrated our second Christmas when Mimi and Poppy arrived from CT. Gabby was so happy to see them! She enjoyed having countless books read to her and just being spoiled in general.
I can’t remember feeling more blessed than I did this Christmas.
