Happy 5th Birthday Avery!

It's hard to believe Avery had her 5th birthday on December 15th. We had a birthday party for her the Sunday before with Family and Friends. It was a great turnout and good time by all, especially for Avery, she couldn't stop running around with all the kids, She was having a blast every minute of it.



Avery 5 years

She's such a big girl now, potty training is in full swing again, and Avery seems to be making good strides in getting there, lately she's been going on the potty 1-2 times a day with some prompting, and we celebrate each one as one step closer. School has been going very well. She is excited to get there every morning. She's also made an impression on Shay, the nurse assigned to the class for Avery. Shay has been great, she is very hands on, as she sits in the class, and helps the teachers, and Avery. She gives us a report on ow she was in class, if it was a good day, or an off day, if she sees any head drops, or seizure activity.  Having her there, gives us great comfort.

With only a couple gifts left to get, we look forward to spending holidays with our families. We wish all of you, our families and friends, a very Merry Christmas.    

Happy Thanksgiving!

Monday morning we heading up to Gillette for the 24 hour EEG scheduled a few weeks back. This EEG was scheduled to 1. take a look at how she's doing, and see if theres any change since March with the addition of Clobazam, and 2. observe nighttime "twitches" and movements she's was making more frequently soon after the clobazam was started.



Avery playing puzzles while they hook up the EEG

After the EEG was hooked up, it was hang out in the Hospital room while they monitored the EEG and video Avery for external signs. We had a good time, played LOTS of puzzles, read books, even watched a movie. 

We didn't spend the whole time hanging out in the room, Avery was unplugged from the monitor to stretch her legs and take a walk around the unit.

Tuesday morning finally come, and we sat down with Dr. Feyma to discuss the results of the EEG. We got some good news, First, the "twitches" we were seeing at night when she was sleeping were NOT seizures. They were just involuntary movements while Avery sleeps, something considered normal. Second, the EEG captured the subclinical and Myoclonic seizures Avery has everyday while awake, typically when stimulated or eating, the positive news was although those seizures were still there, and showing up, they were not as long of duration as shown in the March EEG. So, we are not making any med changes for the moment, going to stay the course, and continue to ween off the Topamax in hopes that Avery continues to improve.

With this news, we had a lot to be thankful for this Thanksgiving, and we had a great day with our families. Hope everyone had a great Thanksgiving as well.

Happy Halloween

Avery and Nick had a great Halloween this year. Avery dressed as Bella, and Nick as Mario, we headed out visiting a few friends, and ended up at grandma Jeanne's and grandpa Tom's to hang out, and hit the neighborhood. Cousins Marae, Harley, and Addison also stopped while we were there.

Later in the week, Avery had a Neurology appointment with Dr. Feyma. In the beginning of September, we started Avery on a new med called Clobazam, This is in effort to try and reduce the number of daily myoclonic seizures, as well as the subclinical seizures she was having that we couldn't see. The plan was to add Clobazam, and then ween off of Topamax, a med she's been on for nearly 4 years. Topamax is known to significantly effect cognition and development. Some history- about 2 years ago we try to ween Avery off it, only to have significant increase in seizures, and 2 GTC's within a week, so we had to put her back on it, but agreed to it, at a significantly lower dose than before. So, at the end of Sept, we began weening Topamax for the 2nd time, we lowered it about a 1/3 of her daily dose, and then Avery got a respiratory infection/cold. So we stopped the ween until she gets healthier, today, she's still sick a month later, but slowly getting better, with the hope to start weening again soon.
    Also something to note, Clobazam is a commonly used med for most Dravet kids, and it's only been available through Canadian Pharmacy, an out of pocket expense to the family. Unfortunately this is too common for most of the meds effective for Dravet kids, they aren't available in US, and families have to go through other resources, and pay out of pocket, some meds at the cost of a mortgage payment. The good news is, just last week Clobazam was approved in the US. Hopefully we can start getting it through our pharmacy soon.
    We also discussed at the appointment that Avery has been having more twitches when she's been sleeping, seizure related? from her cold? from the Albuterol neb? we don't know, so Dr. Feyma has scheduled a 24 hour EEG on Nov 21st. to take a closer look. Keep you posted.

School Nurse Update

    School Nurse Update. Last Friday Debbie and I met with the District head nurse, Special Ed Coordinator, and Avery's teacher to go over Avery's IHP (Individual Health Plan) as well as if they could provide Nursing coverage  in the morning based on Avery's needs. The district Nurse contacted Avery's medical doctor, as well as Dr. Feyma, her neurologist. I also spoke with Dr. Feyma earlier in the week, to share with him what was going on, and discuss our thoughts on the matter.
     Our meeting began at 2pm, and right away we were told that they would be bringing in a Nurse! She is currently working parttime in the district, looking for more hours. She is going to cover Mondays, Tuesdays and Thursdays, and the District head nurse will be there on Weds mornings. She had put together the IHP prior to the meeting, which we reviewed during the meeting. The IHP is a thorough document, stating what to be looking for, in all states of seizures, and when to initiate the seizure protocol, and administer the diastat.
    First day with the nurse on site begins tomorrow, and she will be sitting in the classroom with Avery to get to know her better, and observe her (subclinical) myoclonic  seizures for a few weeks. Please pray that all goes well!

1st Week of School!

Avery's first week of Special Education School started on Monday with much anticipation! But with the new changes to the school system structure for this year, it turned into a nightmare. Hastings school district rearranged the schools for this year. In the past, Tildon Elementary was a kindergarten only school, and grades 1-5 were in the remaining 3 elementary schools in town. This year, The kindergartners were moved back out to the 3 elementary schools, and the 5th graders were moved to the middle school. Also, in the shuffle, the Special Ed was moved from Crista McAuliffe Elementary (where Nick goes) to Tildon, which also serves as the Senior center. Last year, Avery went in the mornings, 9:15-11:45 a received a lunch. Which worked perfect, as she got home just in time for her after lunch nap. For this fall, early on, they scheduled Avery go to the afternoon class, which we quickly called, and requested change to the morning class. This was accepted, and she was scheduled to go in the mornings again.

Monday- First day of school... Debbie and Avery arrived, and Debbie had with a Diastat and Seizure action plan to give to the school nurse to have on hand in case a seizure happens at school. BUT to her surprise, no nurse was there! Turns out, they only have a nurse on site for the afternoon session only. Ya, What??? So Debbie called me, and stayed in class with Avery, while I started making phone calls... The Nurse arrived at the school at the end of the morning session, and Debbie was able to talk to her. She shared that due to budget cuts, she can only be there in the afternoon, and we need to contact her superiors about our concerns. This is unacceptable for Avery, as a nurse has to be there, in order to administer her diastat in case of emergency!

Tuesday- With no answers yet, the plan was to have Debbie in class with Avery again. Finally at lunchtime, I received a call back, and after I explained, we agreed with concern, for the meantime, that we would TRY the afternoon class on Weds, but would continue to look into getting a Nurse or Nurse aid at the school in the mornings as preferred. As an added kicker, Debbie sensed something was up with Avery, and took her to the clinic to get checked out. Found out she has a chest infection. So, antibiotic's were prescribed, and the worries began if this is one of the illnesses will bring on a seizure, and trip to the emergency room...

Weds-With difficulty, Avery took an hour nap at 10:30, and ate some lunch prior to going to school for the afternoon session. As soon as Debbie got there, and met with nurse to give her the Diastat and Seizure action plan. The nurse said she couldn't administer a diastat until we had a form filled out by Avery's doctor to do so... WHAT??? These forms were all in place last year, didn't they transfer over? She's been there for 2 days without this coming up, why wait til now??? Needless to say Debbie left the school with the form in hand pissed!!! Drove straight to the Dr.'s office to get her to fill it out and return it to school ASAP! Thankfully, her Dr. was there, and made time to fill it out for Avery, and Debbie returned it to the school.  Debbie picked Avery up at 3pm, and she was exhausted, Avery got home and crashed she was so tired. Debbie got her up at 4:30, so she wouldn't sleep too long, to still be able to fall asleep later at night. I got home about 4:45, to Avery sitting in her highchair, trying to eat potato chips and dip... If any of you know Avery, and seen her eat chips and dip, it is her favorite, and she devours it, Well, Debbie said she's been having a bunch of subclincal seizures since she got up, and I watched her hold a chip in her hand with dip on it, trying to focus through the subclinical seizures to raise the chip to her mouth with no success. After a few minutes, I moved her hand to her mouth so she could eat the chip. This was our concern, this is what we told them, that the lack of sleep, and getting thrown off her schedule, would increase these types of seizures. She had 30-40 of them between 4:30-5:30 one right after another. And as expected, she didn't go to sleep well either, finally about 10pm, and since she was off, she didn't sleep well. Thursday was not going to be a good day either...

Thursday- After Wednesday evening, it was decided that we would NOT bring Avery to school on Thursday, and notify the school of how the day went, and the reasons, this needs to be corrected. I don't know what they think? We are the experts of Avery, and we know her better than anyone! What will it take for them to understand? Our Persistance...

Friday- I got a call from the Special Ed Director, and we had a conversation of the events of Wednesday, from that, it was decided that next week she will go in the mornings with Debbie, and we will be meeting on Wednesday morning with the districts Nursing supervisor to discuss the events, and changes that need to take place. I think we'll have their full attention...

Just another week in the life of a Dravet parent...

Midwest Dravet Syndrome 5K

Starting a blog for Avery, is something I've wanted to do for sometime. Seeing the advantages, and uses of sharing in multiple format's, I decided to start this blog. So, then the question was... When should I start it? How about after the Midwest Dravet Syndrome 5K Run/Walk? Yep, that sounds good, so here goes!

First off, WOW!, What a day! You could say, electricity was in the air, literally, as a lightning storm went through as we were getting things set up, and registration was to soon to begin. A quick change of plans moved the registration to inside the complex as the storm passed over. With some help from above, the sky lightened up, and a rainbow arched over the sky, just as the 5K was about to begin, giving us a sign, that it would be a great day. 





Avery, Nicholas, Marae and Nathan ready for the 5K Walk

 

With a whistle from Clover's grandma, the run/walk was off, and 60+ Runners got into there stride, and the 200+ walkers got into their pace through the streets of New Hampton, IA.




Mid-pack picture, Runners are way off in the distance cresting the hill.

 


Debbie pushing Avery

 After the Run/Walk had finished, a Breakfast was offered inside, with Dr. Nichols, (Kyler's Neuro) presenting an informative presentation about Dravet Syndrome to everyone. Also in attendance was Laura, the current president of the IDEA League, and Joan, the founder of the IDEA League. Avery ate some pancakes and sausage, but was pretty tired from the hotel stay, and early start, so she took a nap in the truck with Debbie for the last hour of the Breakfast  and Raffle.




Sisters and Cousins

       And before we knew it, it was over. Although final numbers are not tallied up yet. We were able to raise close to $10K for the IDEA League! Thank you to all our Family and Friends who supported and  participated in the event to make it the success it was. Special thanks to the co-creators of the event, Our friends, Brian and Amanda Meyers, and Patty and Alex Dohman, for working hard as a team, and doing this together. We love you all.





5K Family- Patty and Alex, Brian, Amanda and Kyler, Brian, Debbie and Avery