Dravet Week

Well, this week has been and will continue to be full.

Monday we had the amazing opportunity to meet Dr. Charlotte Dravet.  

One of the Dravet moms here in Utah (thanks Kris) somehow managed to get her here.  All the Dravet families in Utah had the opportunity to meet with her for 30 minutes. 

There was a bit of a language barrier...(she is very french :)...but it was neat to meet her.

Our neurologist was in the meeting with us and after we had gone through Ben's medication history and discussed how no medication seems to have helped, he asked if she thought we should try Stiripentol.  She basically said, "Why not?"  So, if the diet doesn't do anything for us that will probably be our next experiment.

At one point she said that Ben is a "unique child".  I tried to respond in a way that encouraged her to explain her statement but she didn't say any more.  Who knows, maybe she says that to all the parents she sees :)

This is Ben checking out his new Elmo blanket that a couple of the moms made.  The put together blankets for each family - with the child's name embroidered in the corner no less.  It was super sweet of them!

Since Ben had been playing with my camera earlier to try and keep him happy during the meeting (he was pretty grumpy while we spoke with Dr. Dravet) it wasn't working when it was time to go.  Consequently, I didn't get a picture of us with Dr. Dravet, but her interpreter took a picture of us together and they are supposed to be emailing it to us.  When we receive it I'll post it.

I so appreciate people who are dedicated to research so that we can have the scientific and medical knowledge to diagnose, treat and care for individuals with all kinds of disabilities.

Well, cool!  Now it was time to prepare to go to the Minnesota Dravet Spectrum Disorder Conference (DSD4).  Leaving your child who is on the Ketogenic Diet with a babysitter for several days is no small task.  I'm just grateful our moms (and dads) are willing to take on the challenge :)

Before we left at the beginning of the week, I prepared 20 meals +6 snacks + the 8 daily supplements/meds for each day that we would be gone.

I had quite the assembly line going.

After meeting with Dr. Dravet on Monday we stayed with Andy's parents since we would be flying out on Wednesday.  On Tuesday I got a call from one of the district school nurses.  I had asked her what we could do about our situation with Ben and the Diastat in school.  The staff at the school are not legally able to give Ben his emergency meds in the case of a seizure at school.  Therefore, the plan is to call me immediately when he starts seizing and I will rush over with his Diastat in case it goes 5 minutes and needs intervention.

I got to thinking about this though...that means that I wouldn't dare leave the house, or at least be anywhere outside of a five minute radius of his school while he is in class.  That's not the worst thing in the world but what if there is a need for me to be elsewhere one day or if for some reason I don't hear my phone?  I suggested that idea that I train a couple of my neighbors in how to administer the medicine and sign anything that would make things legal and then have them be my back up.

Well, apparently there is a group of people that have spent quite a bit of time on the problem.  (One of them happens to be a friend in our neighborhood.)  I guess Ben's situation is unique in the district and they just haven't had to make arrangements like this before.  They came up with a couple of options for us to think about...in a nutshell, either moving Ben to a school that would be closer to Andy so he could run over if needed or, hiring a nurse that could be at school with Ben and legally give him the Diastat.  The only problem with that is that even if the seizure stops after the medicine is administered, they have to call 911....it's just policy.  Though extremely grateful that the district is trying to work with us on this and provide possibilities, I wasn't thrilled with either option.  It would be kind of tricky for Andy to be that flexible with his teaching schedule if he was the one needing to run to the school, and most of all, Ben has already started preschool with these teachers, peers, schedule, building etc.  I feel strongly that he needs to stay where he is. I was beginning to think I should just make sure I never went anywhere during school hours.   To be continued...

This morning we left our sweet babies in the capable hands of my in laws and flew away.

We flew to Denver first and then to our final destination of Bloomington, MN.

I had fun snapping some pics of shoes in the airports...

These killed me!

I have another picture which shows the top half of these men but I didn't want to impose on privacy so I will just describe them a bit...they were all wearing black boots and black pants as you can see, black t-shirts and they all sat down across from us and immediately pulled out books and started reading.  A couple of them had extreme hairstyles and I just got to wondering what they were all doing traveling together.  My first thought was that they were in a band but Andy says that is stereotyping :)  All I can say is that they were intriguing and I had to get a picture of them.  Andy was able to snap this with our iPad without looking conspicuous.

I absolutely love our kids to death but can I just say that it was rather pleasant traveling with just me and Andy?  It felt so strange to not be worrying about checking strollers, car seats and extra bags, administering Dramamine before take off, and keeping them happy on the flight.  I felt like I should be helping other moms struggling with children since I didn't have any of my own in tow.  I told Andy as we boarded a heavily child laden airplane this morning that if any of the kids cried during the flight it wouldn't bother me at all because I knew exactly how it felt to be the parent of that crying child. 

Waiting for the shuttle to the hotel in Minneapolis.  This will have to do for our 10th wedding anniversary picture that was lacking in the last post :)

On the shuttle to the hotel we ran into an old college friend of Andy's that was also going to the conference who I met through the blogging world about a year ago (without knowing she and Andy knew each other...she later made the connection when she saw Andy's picture on my blog.  What a coincidence that they were both blessed...and I mean that with all sincerity...with a child with Dravet Sydrome.)  It was fun to finally meet you in person Niki!

We checked into our hotel and went through the schedule for the next few days.  Then I called our neighbor about Ben's situation with a few questions for him.  We ended up speaking for quite a while.  He wanted to know more about Ben's situation so they could better determine what would be best.  He made it sound like they are still exploring options for us.  They have made phone calls to other districts in the state to see what their policies are on such matters and are waiting to hear back.  He said that their team had spent more time together today to discuss things.  He sounded excited to hear that we were at this conference and encouraged me to find out what I could that might apply to Ben's Diastat situation and then share with them any new ideas.  I was somewhat relieved to hear that we are still working on other options :)

  Since arriving in Minneapolis we have seen several families that are obviously here for the same reason we are...some at the airport, on the shuttle, at the hotel and also the nearby restaurant where we ate dinner.  Many of the kids are attending with their parents.  I must admit, seeing them is hard in a couple of ways.  For one, it makes me miss Ben more and slight thoughts of regret for not bringing him along enter my mind.  And secondly, most all of these kids are older than Ben and have obvious limitations.  Sometimes it's hard to have the future staring back at you.

 When we got back from dinner we face timed our kids with Grandpa and Grandma Bryan.  They were so sweet.  Ben kept waving his little hand at us, Josh kept popping into the picture taking up the whole screen, and we barely saw Matt and Abby as she was busy playing with cousins and he is not really himself yet since his surgery. (I think his scabs came off early this morning.  He's been requiring medicine more consistently to keep the pain at bay.  The frustrating thing is that he doesn't really tell anybody until it's really bad and when you try and talk to him and ask him if he's starting to hurt at all he ignores you most of the time.  It's kind of strange.  But we love him and will give him some time and space :)

Anyway, Ben wouldn't eat his keto dinner for Grandma or Grandpa.  While staying at their house, he wouldn't eat any meal for me unless "Bapa" was sitting right next to him...but I guess "Bapa" wasn't even enough incentive tonight.

The kids hugged the screen when we said goodbye and Ben puckered up, did his finger touch and then knuckles :)

We're excited for tomorrow.  Bring on the knowledge!