Sorry for no details on the September 16 event. Here's how it went; It was a normal night in the Kilgore household, we ate out (Wawa hot dogs for the girls and nada for dear old Dad(he would binge eat later)). We came home to do Rita's homework and finished most of it. For some reason she wanted to save some for Thursday. The girls decided they wanted to get a bath before we read a book and then watched a little TV before bedtime. The water was run (a little warm apparently), the girls tested it an Gracie said it was hot. I ran the cold water until it met the Rita's approval. I SHOULD HAVE CONSULTED THE TEMPERATURE DUCK!! The girls were playing as in the tub as usual as I gathered their clothes. Nothing seemed amiss. When I asked if they were ready to have their hair done and get out, I was greeted with shower curtain closing and come back later we're playing.
As I began the cleanup of the wreckage from the living room play session I heard what sounded like one of the kids falling out of the tub. As I got to the bathroom Rita was holding Grace out of the water. She informed me that Gracie stood up to get something and started seizing. I took her out placed her on the floor and retrieved the Diastat. It took about 3.5 to 4 minutes for the Diastat to work. In the meantime I called 911 just in case. When the ambulance arrived, the recommended we take the trip to St. Marys Hospital (our old stomping grounds from previous seizures).
When we arrived at the hospital it was like we step into the set of Cheers when the cries of Gracie rang out. She was back to herself at this point but postictal(?) not sure of the spelling. We sat for the normal 2 hours talked to the nurses, caught up on the last 6 months with the doctor and nurses and were sent on our merry way.
It is now 6:30 am and the girls are still sleeping. I don't think I will be rushing to wake them this morning.
The streak starts at 1.
Thursday, September 17, 2009
Wednesday, September 16, 2009
Saturday, September 12, 2009
The Circle of Life
We started out the day with a call in the wee hours of the morning informing us that a beloved aunt has succumb to cancer. If all continues as it is going, we will end the day welcoming a new grand-neice and the start of a new generation to our family.
I am leaving tomorrow evening for Scotland to attend my aunt's funeral. I am trying to prepare the girls for the fact that I will be gone for a few days. Rita is much easier to talk to. Gracie just tells me not to leave her! She grabs on to my arm and tells me with her pouty lips that I am not going without her. I am already wondering what I will miss while I am gone.
Grace started in a new room at day care this week. This is officially pre-school. Within a week she has gone from only counting 1 to 3 to now counting 1 to 10 - she usually gets all of the numbers; sometimes she skips 6 or 7. I wonder how in one week she went from only counting 1 - 2 - 3 to counting all the way to 10.
Grace has had trouble with her colors for a while now. She can tell you which items match and arrange objects by colors quite accurately but she can not tell you the color itself. This is one of the items that has the doctor saying that she may need cognative therapy. We will take her to the Intermediate Unit again in October to be re-evaluated. This morning she blew me away - we were playing with a bunch of little rubber bracelets; matching like colors. She correctly identified red, green, blue and yellow. She didn't get orange right, she called it green but she knew that the orange did not match the real green. Where did this come from? Just two weeks ago, she was getting frustrated trying to name the colors when we played a matching game with the pieces from the Trouble game. These are mostly the same colors and she got them all right today. This child amazes me at times!
Grace also started her dance class this week - tap and ballet in one class. She walked out of the class just beaming. This is something she really wanted to do and she was so pleased to be able to go to dance class. She had gymnastics class this morning. She liked it but not quite as much as her dream dance class!
Grace still fights this diet from time to time and at varying degrees. The battle to keep her eating and to keep her weight on is so worth it. Weeks like this just affirm that we are winning the war over epilepsy!
I am leaving tomorrow evening for Scotland to attend my aunt's funeral. I am trying to prepare the girls for the fact that I will be gone for a few days. Rita is much easier to talk to. Gracie just tells me not to leave her! She grabs on to my arm and tells me with her pouty lips that I am not going without her. I am already wondering what I will miss while I am gone.
Grace started in a new room at day care this week. This is officially pre-school. Within a week she has gone from only counting 1 to 3 to now counting 1 to 10 - she usually gets all of the numbers; sometimes she skips 6 or 7. I wonder how in one week she went from only counting 1 - 2 - 3 to counting all the way to 10.
Grace has had trouble with her colors for a while now. She can tell you which items match and arrange objects by colors quite accurately but she can not tell you the color itself. This is one of the items that has the doctor saying that she may need cognative therapy. We will take her to the Intermediate Unit again in October to be re-evaluated. This morning she blew me away - we were playing with a bunch of little rubber bracelets; matching like colors. She correctly identified red, green, blue and yellow. She didn't get orange right, she called it green but she knew that the orange did not match the real green. Where did this come from? Just two weeks ago, she was getting frustrated trying to name the colors when we played a matching game with the pieces from the Trouble game. These are mostly the same colors and she got them all right today. This child amazes me at times!
Grace also started her dance class this week - tap and ballet in one class. She walked out of the class just beaming. This is something she really wanted to do and she was so pleased to be able to go to dance class. She had gymnastics class this morning. She liked it but not quite as much as her dream dance class!
Grace still fights this diet from time to time and at varying degrees. The battle to keep her eating and to keep her weight on is so worth it. Weeks like this just affirm that we are winning the war over epilepsy!
Sunday, September 06, 2009
We quietly marked yesterday as six months since Gracie's last seizure. For a long time I didn't think we would ever see that milestone. This diet has changed so much for all of us; but especially Gracie.
Gracie is so very excited to be starting dance class on Tuesday. She had started a Daddy and me class last winter but with all of the illnesses, we needed to pull her out of it. This is a full class and she will learn tap and ballet. She beams whenever we talk about it. She dances whenever she hears music.
In addition to dance class, Gracie will also get to start back to Gymnastics. She does this because Rita does gymnastics I think more than because she really wants to do the gymnastics. She did a few parent assisted classes last year but I personally felt she wasn't very in to it. This is also something that we stopped for her last year when her body was just too weak to keep up with it. There is no longer a question of weakness - she is fully able to participate. Actually, this may give Tom a break as the girls were both just climbing all over him - taking turns tackling Daddy! Perhaps, the class will help her expend some of that energy!!
Rita finished her first week of school this past week. She is in first grade this year. I thought she would be a bit apprehensive on her first day. Not at all, she hopped right on the bus and just waved goodbye. She was quite excited to see her school friends again.
Gracie is so very excited to be starting dance class on Tuesday. She had started a Daddy and me class last winter but with all of the illnesses, we needed to pull her out of it. This is a full class and she will learn tap and ballet. She beams whenever we talk about it. She dances whenever she hears music.
In addition to dance class, Gracie will also get to start back to Gymnastics. She does this because Rita does gymnastics I think more than because she really wants to do the gymnastics. She did a few parent assisted classes last year but I personally felt she wasn't very in to it. This is also something that we stopped for her last year when her body was just too weak to keep up with it. There is no longer a question of weakness - she is fully able to participate. Actually, this may give Tom a break as the girls were both just climbing all over him - taking turns tackling Daddy! Perhaps, the class will help her expend some of that energy!!
Rita finished her first week of school this past week. She is in first grade this year. I thought she would be a bit apprehensive on her first day. Not at all, she hopped right on the bus and just waved goodbye. She was quite excited to see her school friends again.
Saturday, August 22, 2009
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.
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.
Sunday, August 16, 2009
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.
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.
Sunday, August 09, 2009
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!
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!
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