It has been four and a half months since Gracie had her last seizure. Tom and I are no longer on edge waiting and watching for the next one. We have graduated on to some small freedoms. We let Gracie be alone for small periods of time to play by herself. For the longest time, if Gracie was out of sight, I worried that she was having a seizure. This small freedom is a chance for her to foster some independence and a chance for us to trust that things are alright even if we are not watching her every minute. It helps that she likes to sing and talk to her toys as she plays. As long as the singing, talking and babbling continue, she is not having a seizure.
I guess it comes down to a balancing act of wanting to protect her but not be over-protective and to want her to grow up to become an independent person but to realize that she has limitations. As Gracie grows up and becomes more independent and in control of herself, I want to know that we have prepared her as best we can. One small thing that we do is introduce her to public transportation. There is a good possibility that Grace will not be able to get and maintain a driver's liscence. Her method of transportation will most likely not be to hop into a car and zip off to wherever. We are introducing her to public transportation so she will be aware of it; know how to use it and not to be afraid of it.
All this talk of independence...the reality of it is that Gracie is still our sweet little three year old who is a long way off from doing much on her own. But we have hope.
Sunday, July 19, 2009
Gracie has now been following the ketogenic diet for just over six months. It has it's challenges but the benefits are definately outweighing the negatives. The biggest benefit is that we are well over the 4 month mark os being seizure-free. Grace just sat here and sang me a song she made up about her daycare friends. It was so amazing and so sweet. The longer she goes without seizures, the better her long-term prognosis is.
Gracie is getting more clever about trying to scam food off of people. Her most amazing ally is her sister. It's bad when Gracie begs for something and then Rita also starts asking if she can have a little bite of whatever it is she wants. Rita has a lot of empathy for Gracie. Rita often comments how great it will be when Gracie can be off of this diet. At times Rita actually feels bad for being able to have something the her sister can not eat. It is a reminder that Rita is on this journey with the rest of us.
Gracie has put on a little bit of weight. She hit 29 pounds on the scale the other day. She is still not close to he 31 pounds she weighed when the diet started in January. She continues to grow and many of the other side effects seem to be resolving. Her hair stopped falling out like it was. Her hir color is much more brown than black. The doctor commented on her hair color on our last visit. I hadn't noticed it much. However, I did really notice the brown color when she was with all of her 'Chinese friends' (her travel group).
We make the choice to stick to this diet over and over. There are times we are tempted to let Gracie slide off of this diet. That temptation gets quelled by the little things - seeing one of our local ambulances and not knowing the paramedics! For a while we were seeing them so often, we knew all of them. We have not seen our friends at the St. Mary Medical Center ER since March! There were times we were seeing them weekly. We keep up with the diet because in the long run, Grace is better off for it.
Wednesday, July 08, 2009
I just came across some old pictures. The picture of Grace is the white dress is from two summers ago at Gracie's Christening. I never thought she was chubby or had any baby fat. However, when I look back to two years ago - the change is dramatic to just how thin she is now. The top photo is of her today - her face and neck look so thin.
I also found a photo of all of the babies in Gracie's travel group - the traditional 'red couch' photo. It was great to see how these babies have grown and are thriving. Gracie is the second baby from the left. This was December 2006. There is an updated photo of the babies all sporting their lovely yellow dresses in the next post.
Tuesday, July 07, 2009
Sorry for the delay in posting..we just got busy with all kinds of good things! Rita finished kindergarten. We attended a travel group reunion with Gracie's travel group. We went to Florida for a short visit with our friend Shamu! We had breakfast with Alice in Wonderland and Mary Poppins. We are starting to adjust back to 'normal'. Rita is going back to Just Children, the day care center where she was prior to kindergarten. It is great to have both girls at the same place again - only one drop off and pick up!
Grace remains seizure-free. We passed the four month mark while we were on vacation. WooHoo!! The changes in Grace are evident. She is definately speaking more and singing and dancing more! It does our hearts good to see a happy and otherwise healthy three year old emerge from the fog she has been living under. Grace is definately more sneaky these days though!! Grace sneaks snacks - actually crumbs of snacks - that she should not be eating. She is begging for food again but this time she is asking only for 'a baby one'. She tried to reason with us to get more food. One of her favorites is when we give her a choice. She will select food A and when it is gone she changes her mind. At that point she says, "I no want xxx." and then she goes for the second food. She gets an A+ for effort with trying to get more carbs!
Grace seems to have tired of peanut butter just a bit. We were at the point that we were carrying a jar of peanut butter and a spoon everywhere we went. While we were on vacation, she started eating peanuts and cashews. She has developed a real taste for the cashews. I handed her a small bagt this evening and she cradled and snuggled it like it was a baby! Even though Grace's tastes go in cycles, I am happy to be able to add new foods to the repotoire.
Thanks for checking in on us. I will try to keep the updates a bit more current!