I did it.

We have been hearing Gracie saying this more and more of late. She is mastering skills and doing things that give her great personal satisfaction. She is so proud of herself when she can do things for herself.

One of the items that is a milestone for 36 months of age that Grace has consistently missed is dressing herself. We have long debated with her pediatrician and the neurology team if this is an issue or not. We could not decide if this is something Grace could not do or just chose not to do. I think we can chalk this up to one she chose not to do. She dressed herself this morning and again this afternoon after her bath. She is so proud of herself when she accomplishes this. She then runs around the house showing and telling everyone. Fortunately Rita is the gracious big sister and gives her the praise that she so craves! When Rita tells her she did a good job, it matters more than anything!

I think I mentioned this, but Grace loves tattoos! One of the rewards we used for her when she started the diet was new tattoos for finishing a meal. Well tonight, she found a tattoo and managed to get a wet rag and she put it on all by herself!! It was very funny. She just beamed with pride as she announced, I did it! Self application of temporary tattoos is not on the milestone chart but for Grace this was more important than anything else on the chart!!

Thanks for checking in on us.

A Change of Diagnosis

We had a meeting with Grace's neurologist on Friday. I usually go in prepared with a list of questions. One of my questions was long term prognosis for Dravet's. What should we be expecting? Instead of grim, dire news, he said he thinks that Grace may have GEFS+ and not Dravet's. The big distinction is that Dravet's is characterized as a degenerative disorder while GEFS+ is not. Both disorders are related to the same genetic disorder - the SCN1A gene. When Grace was first diagnosed last year, she followed the typical path of a Dravet's patient. However, she has obtained some degree of control through the diet and she has not developed the characteristic myclonic jerks, her doctor feels that she most likely does not have Dravet's.

Grace did her typical not talking for the doctor or nurse practitioner this time either. She gets shy and coy when the doctor comes into the room. I swear she is flirting with him. It is hysterical! This time she didn't do her pattened move and put her elbow on his knee, with her hand under her chin and gaze up at him adoringly! That is really outrageous flirting when she does that! I swear she did not learn that from me - LOL.

The one downside of this visit is that they are recommending that Grace stay on the ketogenic diet for as long as her body can tolerate it. This means longer than the 3 years we initially thought when we signed on for it. They are pleased with her progress - well over 160 days seizure free and want to make the most of that. In the grand scheme of things, it's a small price to pay for a continued good outcome.

We reviewed what to look for when we take Grace back for our follow-up with the IU (Intermediate Unit) in October. The doctor and nurse practitioner feel that Grace can benefit from some speech therapy and some cognitive therapy. I will do my part and push for that. I really didn't push in April. Now I know better.

We also discussed potty training. Grace was almost completely potty trained before she got pneumonia for the first time this winter back in December. With two more hospitalizations and a stay in ICU after that, she is very much regressed in her potty training. I was concerned because she was catheterized and I worried that it damaged something. We were reassured that many children regress after a hospital stay and that this is normal. Given that she had three stays in a short period of time, this is understandable. CHOP does have a program to help children who are delayed with potty training; however Grace does not qualify for it. They don't think it is a problem until the child is 6 years old! Where Grace is at is perfectly normal. I love hearing that !

Grace also topped the scales at 30.2 pounds! This is great news. She is almost back to her January starting weight of 31 pounds. I will try to post photos soon of her filled out cheeks! The camera and charger got separated so I now have a uncharged camera that I have been carrying around - not very helpful!

Thanks for checking in.

A Scare

We had a scare this past week with Grace. Day care called to report that she was broken out in a rash - very widespread. They were worried about chicken pox or some other virus. Tom picked her up and took her to the doctor that afternoon. It turned out to be a reaction to bug bites. Thank God.

Of course I was scared out of my wits. The last few times Grace got really sick, she caught whatever was going around. I waited with bated breath for Tom to call me and let me know the outcome. As I didn't hear from him and I didn't have any messages from him, my mind imagined the worst - she spiked a fever, went into seizure and was at the hospital. We have been warned that if she gets chicken pox, we should expect to spend about two weeks in the hospital until the fevers pass. I rationalized that Tom didn't call because he was too busy handling the situation. I started making arangements to be out of work for a few days. I was prioritizing what had to be done and who could handle it and figuring out what could wait. While I was busy with my planning, Tom and the girls were enjoying the newest Disney flick, G-Force at the movie theatre! Tom didn't think I needed to be told right away that Grace only had bug bites.

Grace is behind in some vaccinations but she did have her chicken pox vaccine - the first dose. She is scheduled to get the second dose within the year. When Tom first called the pediatricians office, they said that she is not fully covered with the vaccine until she gets the second dose. Of course, this news just fueled my paranoia. Since Grace's seizures are often triggered from the fever she spikes associated with vaccinations, we needed to slow down the schedule and at times halt them altogether for a while. We are almost caught back up!

Aside from a lot of bug bites on all of us, we are doing fine. Grace passed the 5 month mark from her last seizure. A long time ago someone promised Grace something 'special' if she could make it six months seizure-free. At the time, we all just kind of laughed and thought this would never be possible. I am beginning to entertain the possibility that she just may make it to that magical six month mark. Of course, Gracie does not realize that a promise was ever made. Tom and I like to tease the person who made the promise. In reality, this promise is a reminder that there is always hope - a hope that seemed impossible just one year ago.

Thanks for checking in!