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!

Ten Years and Tonsils

Andy brought me breakfast...in Ben's room :) on Thurs. morning in celebration of our 10th wedding anniversary. 

Placed on the tray were two sprigs of beautiful hydrangea.

I thought it was sweet since I know he knows I like them a lot, but he also reminded me I wore them in my hair on our wedding day.  He has such a good memory and can be quite sentimental about things like that :)

This is kind of a lame post about an anniversary because there will be no pictures of the two of us.  For some reason I didn't think to get one that day and so my next thought was to post some of our wedding pictures, but alas, ten years ago, it wasn't as common to have a digital copy of everything...so in other words, I need to get busy on scanning our pics.

Anyway, he also handed me a gift...

I immediately recognized it.

While we were dating, we coincidentally gave each other for Christmas, an empty gold box based on this talk from a First Presidency Christmas Devotional.
After we were married I ended up putting some trinkets from our dating days in the box and storing it away.  Andy hunted for it in the storage room and gave it to me again.
This is what I found in the box...

These were some of the hydrangeas that I wore in my hair on our wedding day.

Around Christmas time in the year that we were dating, Andy sneakily slipped a hand crafted fortune into a packaged cookie from a restaurant and gave it to me.  Looking at the numbers on the bottom, I recognize our birthdays but the last two numbers I'm not sure what they represent...(I truly have an awful memory).  It's kind of a funny coincidence though because they ended up being the birthday of one of our kiddos.  The red and green thing in the bag is mistletoe that I believe hung from his rear view mirror for a while  ;)

Some dried roses from different occasions.

Now this bee has a story.  I'll see if I can tell it briefly.  It was Valentine's Day, 2002.  I had absolutely no idea what to give Andy.  He and I had institute classes across the hall from each other at the same time that day.  I had to have something to give him when we saw each other after class.  I was desperate because I did something that I'd never done before and never did again...as far as I can remember :)...I skipped class!  Shocking I know.  I went shopping during that hour and arrived back at campus empty handed.  I just didn't know what to do.  I hurried to the vicinity of my classroom, needing to be there when Andy came out of his class.  As I approached a minute or two before class ended, I saw Andy standing out in the hall holding a big bouquet of flowers.  I can't remember all the particulars, but poor Andy had arranged with my teacher to make a clever presentation of my Valentine's Day gift during class...but I wasn't there.  It was kind of a "Gift of the Magi" moment.  I felt so bad.  Anyway, this little bee was sitting amongst the flowers in the bouquet.  (I love bees).

So these were some of the memories I found in the gold box.  It was sweet of Andy to remember.

Well, the rest of the day was pretty regular.  I ended up squeezing in a trip to the doctor and he added a new med to what I'm already on.  We'll see if that does anything.
When I came home from my appointment, Andy and the kids surprised me with an Olive Garden dinner for two with candlelight.  Abby and Josh drew up some menus.  They were pretty cute :)

(10 years ago)

We ate dinner amongst fighting, tears, and interruptions but it was still nice...any dinner is nice that you don't have to cook :)
I love my hubby!  He's an amazing man and I know I don't fully recognize how blessed I am to have him.
Happy 10th hon!

Now, to totally switch gears...

Remember these?

Well, they're gone!

Matt was a really big boy on Friday and somewhat willingly had his tonsils removed.

BEFORE

 He had been pretty worried about it and, over the last several days, repeatedly told me he wasn't going to have them out.  Well, Andy gave him a blessing the night before and we talked a lot about how Heavenly Father would help him.  I guess those things helped enough to get this smile out of him before surgery.  They had him in and out super fast.  I only waited about 30 minutes before the doctor came in and told me that he had done well.  He said, and I quote, "Big, huge tonsils.  Nasty.  Awful!  They needed to come out - no question!"  While he was in recovery I listened to the little boy in the next room screaming.  I got worried that Matt would come back in tears.  However, when they wheeled him in he was silently curled up in the big bed on his side.  I asked him how he was doing and he just stared straight ahead.  I was glad he wasn't crying but it was a bit disconcerting to have no response at all.  He came around eventually.

AFTER

  He was okay drinking and walking around so they sent us home in good time.

Didn't feel like giving me a smile there.

Matt wanted to take our Staples "Easy Button" with us and push it after he was done.  We barely remembered when we got in the car to go home.

He was a bit sick a couple of times that afternoon but he was in pretty good spirits.  He fell asleep on the couch that evening for a while and when he woke up the anesthesia had worn off so he was in quite a bit of pain.  He got himself worked up into quite a tizzy and wouldn't take the medicine.  When we finally got him to calm down and take his medicine he ended up being fine and has continued to do well.  My favorite part about all of this is his cute, high, little voice that he's using when he talks.

 He's enjoyed having the endless popsicles, drinks and various other frozen treats that he picked out at the store with Andy a couple nights before. 

He was a trooper and I am proud of him!

Ketogenic Diet Organization

So, with so much to keep track of with this diet, I've been able to exercise my inclination to organize.

There have been four areas that I have put some work into...let me show you.

I decided to get a tray to place on my counter top to house all of the "stuff"...scale, cups, supplements, syringes, mortar and pestle, spatulas and meds.  This has been helpful in keeping everything together and easily accessible.

It stresses me out to try and keep track of things in my head.  I have to write everything out.  So, I came up with this paper to record all of the "stuff" throughout the day...ketone test results, (D.1, D2., etc...D is for diaper), how much liquid he gets (it's important to make sure he doesn't get too little fluids or too many), supplement checklist (these are in so many different forms...can't give them all together...and some have to be spread throughout the day so I mark them off as he gets them...notice I left off Vitamin D and had to write it in :(  I was so disappointed when I realized this.  A place to write down what he eats for each meal, and a section for keeping track of his seizure activity.  I had this copied, cut and pasted into several, little notepads and attached a magnet on the back and stuck it to the fridge.  I think I'm most proud of this little invention :)

 I put together a binder to hold everything.  I stick the filled out checklists in the front pocket along with blank index cards on which to write down recipes that can then be stuck in the pockets next door.

I can then take them out and stick 'em on the sticky tack I have on the cupboard door above my food prep area.  This way I don't have to have the whole binder taking up space in the food area and I don't have to keep going back and forth between the binder and the food.

 Next in the binder are fun, colorful pockets in which to keep odd and loose papers.

 Here are my extra notepads.

And then I put my master list of all the recipes and other important papers that I reference frequently.

The next is not such a pleasant organization idea but a must for diet doers.

You have to test urine.  That's how you know how many ketones he has.

So, to make it go as smoothly as possible, I placed everything in a pencil box...fat syringe, cotton balls, disposable gloves, ketone test strips, little cups, and a bamboo skewer to get the cotton balls out of the syringe after they have been compressed.

Again, this keeps everything together and, at least in my mind, keeps things a little more sanitary.

The box goes on top of the wipes in the diaper caddy.

I hope this "stuff" can be useful to someone else that has a child on the diet.  If anyone is interested, I could probably figure out how to post a copy of the checklist to be printed off (first I'll fix the Vitamin D business).  Just let me know :)

Depression Stinks!

Forgive me while I scribble a not -so -upbeat post.

Skip it if you like.

I'm still struggling to get a hold of my emotions on this new med.  I've been thrown a particularly hard time the last several days...probably a combination of stress (A.K.A. Ketogenic Diet) and missing a dose.

Along with being sharp with my kids, I've ignored phone calls, turned down opportunities to serve and missed/canceled previously scheduled appointments....all because I know I'll be humiliated when I inevitably break down in tears.  The last two public gatherings I've attended I've embarrassed myself.  

There was a family get together for one of my cousins who was passing through town.  I hadn't seen her in years and I was excited to be able to talk with her and catch up.  Most of the conversation ended up focused around my family and all that's going on.  It drives me crazy when the tears just come and I can't do anything about it.  People think that something is terribly wrong and it's hard to explain that no, really, everything is okay, I'm just emotionally unstable and will cry at the drop of a hat.

It's such a snowball effect...cry, get embarrassed, cry some more because you're embarrassed and frustrated with yourself.

Yesterday, Andy and I attended a husband/wife area inservice for S&I (Seminaries and Institutes).

He was one of three teacher presenters that addressed us at the look out sight above Bear Lake.  These three had all visited Jerusalem and since the New Testament is the course of study for this coming school year, they had them talk about their experiences there.  (Apparently there is an amazing resemblance between the Sea of Galilee and Bear Lake.)

(He did a great job by the way!)

Anyway, at lunch, a sister at our table, just to start some pleasant conversation, asked how our family was doing.  I tried to deflect the question lightly but it came back around to us.  I started tearing up and Andy gallantly stepped in and started talking for me.  I tried to get it under control but just couldn't.  I had to excuse myself with tears streaming down my face, and walk across the whole room of tables filled with people to get to the exit.  

How embarrassing!  Luckily, these are all friends and very kind people so they showed genuine concern and were very understanding.  As a matter of fact, after I returned to the table, the sister that first asked the question told of a similar thing that had happened to her years ago.  I was fine for another couple of hours until I had a small interaction that really was not that big of a deal, but it threw me again for the rest of the meeting.

Last night, when Ben woke up around 2:30, I went in and tucked him back in and lay down on the floor.  For the next hour, our conversation was thus:

Ben:  Maimee!

Me:  What?

Ben:  Neigh! (referring to the horse on the cover of his book)

Me:  Neigh.

Ben:  Maimee!

Me:  What?

Ben:  Neigh!

Me:  Neigh.

Over and over and over.  Sometimes he's a little broken record...a cute, little, broken record :)

He would not go back to sleep.  Depression and lack of sleep is not a good combo.  I became quite frustrated and finally left the room which caused him to start crying.  I went out on the couch and cried too, feeling extremely guilty.  After several minutes, I knelt down and sincerely asked the Lord to help Ben fall back asleep...for both our sakes.  Within 5 minutes he went silent.  I thought Andy had gone in to calm him.  I waited a while and went in our room.  There was Andy in bed...Ben had fallen asleep on his own...he never does that so quickly.  A miracle!

This afternoon, when Andy came home from work, he asked me what had happened during the night.  I explained and when I got to the part about thinking he had gone in to help Ben, he inserted that no, he hadn't done that, but he had offered a prayer for Ben to be able to fall back asleep...yes indeed, a miracle.

I know you don't need to hear about all of this.  It's important for me to get my feelings down though.

I need to see my doctor again, probably tweak my meds...I just don't  know when I can work that in :)

One thing that made me happy tonight was a comment on my blog from someone that I don't know personally but know of.

Jen Giddens, creator of the bag pattern that I reference in this post, contacted me and told me she liked my fabric combos.  She asked permission to use some of my pictures on her blog!  How flattering, and what a nice little bright spot with which to end my day.

I promise my next post will be much more positive :)

Popcorn/Chicken Potpourri

Josh's foot is healing nicely and is finally cast.

Home Health came in Park City to change Josh's bandages.  She turned out being one of my mom's old friend's sister.  Catch all that?

The Monday after we got back in town we had another appointment.  Josh finally felt it time to look at his foot.  He was okay with how it looked.  Since he felt like he could look at it I felt like it was time to post it on my blog.

It looks so much better than it did.  I hope this isn't TMI.

Josh's worst nightmare of the day came to pass.  Dr. C. said it was time to take the stitches out.  They hadn't even touched him yet and he began to sort of freak out.  I went to his side and tried to distract him by having him tell me all about the game he was playing.  Every now and then he would say "ouch!" but overall he did great!

They're out!

 

 

Josh was excited to try out a glow in the dark cast.  He'll still be in the cast when school starts...but not for too long.

I took this picture for one reason but am posting it for another.  I've always known Ben lines his toys up but this picture shows just how much he does it...animals, beads, trains...he does it with just about every toy he plays with.

Here's the popcorn part of the title.  I was so thrilled to see that Ben could eat one of his favorite treats on the diet.  I had kept popcorn from him for 2 1/2 months thinking he wouldn't be able to have it.  I was sad to realize I did that unnecessarily but excited to find out I could give it to him again.  Here Andy is feeding him popcorn with a fork so as to not lose any of the butter on his fingers.

 This next part is silly and frivolous but I was pretty excited about it.  I ran to Staples the other day for a couple of things and got sucked in. All the back to school things are out in full force.  I just can't resist all the nice, new pencils, binders, folders, notebooks, crayons etc. etc...

On the same trip into town I also stopped by JoAnn Fabrics and found a fun little display.  Have you heard of Smash Books?  They're pretty nifty looking but I've never been able to justify buying all the stuff and indulging in them.  Well, JoAnn's had a Smash Book display and all the stuff was 40% off.  I grabbed a bunch...not for a book but to use in other crafts and things.

Smash Book stuff

The Martha Stewart organization/labeling stuff was dangerous.  My goodness I got carried away.  All the different kinds of labels were my favorite.

One of my favorites...cute colored, shaped sticky tabs.

A shot of most of my loot.

I told you it was silly :)

When Josh had this second surgery, Grandma Bryan brought four little white boards for the kids to play with.  They were such a hit...they used up the ink in their markers.  I never let Ben use his though because I was afraid of where the marker would be used :)

While on this excursion mentioned above, I found the perfect solution.

Crayola, washable dry erase markers AND...dry erase crayons!

How fun is that?

I waited for one of the kids to tell me they were bored before I broke them out.  It didn't take long.

They had a bunch of fun using them.

This is the chicken part of the title.

Weighed an measured to the tenth of a gram, I was relieved to be done preparing one of Ben's meals yesterday.  I grabbed the stuff to put back into the refrigerator and accidentally knocked the precious, perfectly weighed chicken and mayo to the ground.  I wanted to cry but took a picture instead.  At least the bowl didn't break.  Back to square one:)

As Andy was about to take Ben into the bathroom to brush his teeth he realized what he was doing with his toys.  (He wasn't lining them up for once :)  He was putting the people on the backs of the cows and horses as if they were riding them.  He's never done that before.  It was pretty cute.

Notice the tongue.  He often sticks it out from the corner of his mouth while he plays.  Notice also Michael Phelps (and his mom :)  in the background receiving his 21st medal.  We've been loving the olympics at our house and have them on kind of constantly...I'm embarrassed to admit our t.v. has been on that much lately.

 This last thing is kind of silly too but it's a rather ironic story.

Each of the boys owns a little wooden train that spells out their name that I painted for them.

Ben's has been missing the "N" for months now.  It's been driving me crazy!  I'm the kind of person that counts all the pieces in a bag of toys as I put them away to make sure they're all there.

Ben was playing with his train in his high chair a while ago and when I went to put it away, the "N" was nowhere to be found.  I figured it would turn up somewhere soon...but it didn't.

I've been thinking of actually buying another "N" and painting it to have a whole name again.

This morning I looked up at his shelf where the train sat and was irked again at the sight of the engine, "B", "E",...caboose.  "Where could that be!?!" I asked myself.

(I know I'm making this a ridiculously long story about something that's not really that important...forgive me...I just have to write it down...)

Anyway, this afternoon as I was putting the high chair away after Ben sat in it for approximately four hours because he was so stubborn and refused to eat his breakfast, I tipped it forward and just guess what fell out! (along with a few goldfish crackers).  I've checked that high chair multiple times! I was floored and thrilled at the same time.  I eagerly took it to Ben's room to place it in it's rightful spot.  I stood back, reveled in the feeling of completion and then went on with my day.

Well, as luck would have it, Ben requested to play with said train later that day.  He hasn't asked for it for as long as the "N" has been missing.  I thought as I was taking it down from the shelf that we would probably loose another one of the pieces by the end of the day.

He played with it, among his many other toys, on the floor of the living room throughout the evening.

When it was time to clean up, the caboose was gone.  I searched everywhere but didn't come up with anything.  I regretfully placed the remains back on the shelf and am resigned to the fact that it might be months before we find that little, red caboose.

I'm newly amazed each time I look at Ben's baby pictures at how tiny he was.