Planning for Independence

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.

Half a year in...

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.

Wow - Changes

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.

Marie

It's been a while...

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!

Grace continues with her seizure free streak. I think I may actually be getting complaicent about the seizures. I have caught us going out without her Diastat and 'emergency bag'. There was a time I didn't even go for a walk down to he corner without the emergency bag. We have been running out for errands or short trips and I get home to realize that we left without the bag. By the grace of God, we have been ok. We need to work on keeping our guard up. It is wonderful to have moved to this phase though! I appreciate that this is an upgrade of problems.

Grace is still haveing eating days and non-eating days. There are days she is ravenous and want to eat everything in site. And then there are days that we can barely to get her to eat. With her new meal plan, Grace gets some additionalo carbs. This has helped her a bit. She now gets a single cracker for a meal. She has developed a love of Ritz crackers! We heap a big gob of butter on the cracker and she usually eats it. We had one or two times when she even went so far as to have the spoonful of butter after the cracker. This is great as it means less oil in the syringe after her meal!

Friday is Rita's last day of kindergarten. Wow! I am amazed when I think about everything she learned this past year. She can read. She can count change and use coins. She is learning Spanish and tries to teach us as well. Her imagination is abundant! I grew up at a time when kindergarten was optional! I learned what she did this year when I was in first grade. Kids these days are so smart. She is one of 25 children in her class and they all have done an amazing job!

Thanks for checking in!

100 Days

We have reached 100 days of seizure freedom! Yahoo!!! We are all so excited to get to three digits in our count. Grace is oblivious to it. She is miserable today. She is tired and cranky and has a runny nose. Hopefully she will take a nap and wake up in a better mood.

Overall Gracie is doing fine. She is hovering at the 28 pound mark for her weight. Her hair is still thinning a bit. In terms of degrees, you can see her scalp through her hair when you look down at her head. It is not overtly noticable at this point.

Rita had her dance recital this week. This was her third recital. She loved performing and had the hugeswt smile on her face the whole time she was on stage. Grace is so ready to have her turn in the spotlight! She was taking dance earlier this year but we stopped it in March when things got crazy. Next year, Gracie can take a class and be a part of the show. She can hardly wait!

This is birthday party weekend for Rita. She has 2 birthday parties this weekend - one today at a swing set place and one tomorrow at Build-a-Bear. I get to take her to both. However, I was informed this morning that she would rather if her Father took her - he is more fun! Children are way too honest sometimes! I was surprised that she wanted Tom to take her to today's party - the guest of honor is the same boy how called her earlier this week.

While Rita and I are going to parties, Tom asked Gracie what she wants to do. Gracie's response is that she wants to take a walk. This is her frequent request. She loves to take a walk after dinner each night. A walk to Gracie is that she gets into a stroller or wagon and gets pushed or pulled around the neighborhood. Tom thinks it's funny that she wants to keep walking when she doesn't do any walking! Rita now likes to take her bike out. She will ride along while we all walk (or ride). The kids like looking for birds, rabbit and other animals while on a walk. It's good for all of us.

Thanks for checking in.

Marie, Tom, Rita and Gracie

It's Starting....

We just had a very amusing phone exchange...Rita had her first phone call from a boy! I did mention that she just turned six, didn't I??? This is very strange. It's a good thing he r father was not home yet. He told her she is not allowed to talk to boys until she is 30! Anyhow, the boy in question called and asked to talk to Rita. I gave her the phone. She handed it back to me to talk twice. Then the phone was returned to me to hang it up. Rita seemed quite pleased that this boy called her. I just don't know how I am going to break this to her father!

The girls are growing up so fast. Rita is now six and she has only 9 days of kindergarten left! Gracie is three but she is now telling folks she is five. Sometimes she says she is three and five. Despite everything that has been going on with Gracie she is right about where we would expect her to be at three (almost three and a half).

Grace seems to have adjusted to her last medication shift quite nicely. She is noticably more alert and interactive with everyone. She is certainly more playful. We often wonder how much all of the medication represses Gracie. Since we would not dream if withholding her meds to find out, we can only guess. However, a few weeks now after dropping her dose of Depakote, we see more of her personality coming through. She is one funny kid!

Grace is now officially on the ketogenic diet at a 2:1 ration. The nutritionist determined that is her ratio since we started letting her eat unlimited protein. We were given a full meal plan at this ratio. We are no longer using the heavy cream option so she must have a syringe of oil with every meal but she gets more carbs and protein so she seems happy with it. The plan we are at now definately seems like something we can live with. It is much more portable and we are eating out again now.

Whatever we are doing, Grace seems to be responding well to it. On the home scale she is up to 28 pounds. This is a victory for us. She was 31 pounds before starting the diet but we were having trouble getting her over 26 pounds. We are also in the 90+ day range for seizure freedom! Another victory. We are awaiting the lab results to see if we need to add any additional suppliments. Her hair has thinned out a bit. We can deal with that. Hair is not so important in our house :-)

Thanks for checking in!