Old Hat...New Hat

This morning I got a phone call telling me that Ben's new helmet had arrived!  Even though I hadn't showered and had not planned on going anywhere today I made an appointment to go pick it up. 

Ben was so patient as the man at Rocky Mountain Artificial Limb and Joint tried on and adjusted the helmet several times.  It's the smallest hockey helmet he could find.  He still had to put in two layers of padding to make it fit tight enough.  

There's a chin strap on this one which he's still trying to get used to.  You have to attach three different things on this one as opposed to one on the old one which we're still trying to get used to.  The snaps are super tough to close together.  The man said they would get easier with use.  Hopefully it will work out okay though.  We're supposed to give it a week and let him know if we like it enough to order a second one to have on hand.  

Our experience today took me back to about a year ago when we got his first helmet.  

His myoclonic seizures had gotten to the point that we were so concerned about his safety every minute of the day.  He was constantly falling and crying.  He always had a new bump, bruise, bloody nose or black eye.  It was so hard on him physically and emotionally.  Often, I would start crying when he started crying because I felt so bad for him.  Our insurance case manager referred us to a place in Ogden to get our helmet.  I cringed when I saw it for the first time. 

It was so ugly...a beast of a helmet.  But if this was going to help him I would do it.

We had a helmet party that night with the family to help Ben feel more at ease about his new accessory.

 

We played helmet games and sang helmet songs...we had to really stretch some things, but we made it work.  I'm pretty sure Ben had a good time.  He never really fought it in the beginning.  It was amazing how well he took to it.  Of course there have been moments but he's been a trooper.

Well, it was just a few months before the foam started coming apart.  We took it back to Ogden and they glued it back together and said it should never come apart again.  I wish it could have been true but it continued to deteriorate...as a matter of fact, the face shield cracked a few weeks ago.

Back to our insurance case manager, which by the way, I love.  She's helped us through a lot and made things a lot easier than they probably would have been otherwise.  She told us that there was no limit to how many helmets we could order per year so we decided to order a new one.  The Ogden company told us that that was the only model they had and that if it was already falling apart maybe we needed to look elsewhere for a different helmet.  After a little searching, lo and behold, we found RMALandJ right here in Logan.  We liked Greg from the beginning.  He said that Ben's helmet looked much too medical and surely we could find something more "little boy" looking.  He was determined to find something that would work for us.  

Well, here it is and we'll keep you posted on how it turns out for us. 

Chicago PART 2

Ben slept like an angel Wednesday night.  However, he woke up super grumpy.  I was hoping that by our appointment with Dr. Laux at 1:00 he would have reverted back to his usual little charming self.  

We took our time getting ready for the day and then walked down the street to a Corner Street Bakery for breakfast.  The guys had breakfast paninis and I ordered a yogurt/fruit parfait, a side of potatoes, hot chocolate, orange juice and a slice of cinnamon cream cake.  It was all pretty scrumptious!

One of the waiters took a liking to Ben and talked to him quite a bit.  He told him 'he was the future'.

After breakfast we had about an hour before we needed to leave for the hospital.  We decided to walk a bit down the Magnificent Mile and do some window shopping.  I had come prepared with a hat and mittens for Ben.  He wasn't too keen on keeping them on but he eventually got used to them.

We ended up inside of a mall because of the biting cold air outside.  

This is a fun store window that I saw.  Those are cakes on top of the bridesmaids' heads.

We went to a children's store called Kooky.  Almost immediately I saw a Cat in the Hat stuffed animal that I knew Ben would love.  I picked it up...saw the price tag...and put it back down.  A little steep for my taste.  Ben had seen it though and apparently, as Andy was strolling him around the store, he kept signing "cat".  I couldn't resist.  He loves his Cat in the Hat and held on to it pretty tightly for the first little while.  

We then headed back to the hotel and hopped into a cab.  By the way, "hopping in" includes folding up the stroller and putting it in the back, Andy buckling in the car seat and then buckling Ben into said seat and then buckling ourselves in.  We did get pretty efficient with the process though and could do it in probably less than three minutes.  Our cab driver to the hospital was the most reckless we had experienced to that point.  He also was a honker and would honk at anyone for any reason.  His method of driving was similar to what I am told is my own method; pushing the gas pedal down and then taking my foot off and then pushing it down again when I need to pick up speed and then releasing it completely again when I reach my desired speed.  After the ride I asked Andy to assure me that I wasn't as bad as this guy.  He said I wasn't.  Let's hope he wasn't just trying to make me feel better.  When we pulled into the hospital entrance area, the cab driver rolled down his window and told a lady trying to parallel park that she needed more training.  He was a character.

Once inside, we were directed where to go.  We reached the third floor and found the epilepsy area.  There was no waiting room or anything.  Just an office where I stepped in and filled out a little paperwork while the guys waited in the hall.  After a minute, the nurse took us into Dr. Laux's office. She got some measurements on Ben and then soon thereafter, the doctor came in.  We had arrived quite early for the appointment and so we were thrilled that she came in as soon as she did.  We spent three solid hours with her.  She was great!  I liked her a lot.  Not only was she sharp and knowledgeable but also very kind and friendly. 

After about two hours of trying to entertain Ben in the office, he finally fell asleep on my lap and we were able to continue the conversation with no distractions.

She said Ben seems like a pretty typical case of Dravet.  The only thing that doesn't really jive is his problematic pregnancy and problems at birth.  

We now have a game plan and list of things to try in order of what will hopefully work the best to the least.  She wants us to give the ketogenic diet a try.  This seems to be especially helpful for the myoclonic jerks that keep throwing him to the ground.  If that doesn't seem to help, she wants us to try Clobazam again and if needed add Stiripentol on top of it.  This combination also seems to be most helpful for the jerks.  There were a couple of other things she listed but they were a lot less likely to be helpful to Ben.

She also had some suggestions for therapy such as speech therapy more often than he is currently receiving and also physical therapy if and when we get his myoclonic seizures under control.  She said he might grow out of the awkward gait he has right now but then later, around the teen years, many develop a crouched gait.  Therefore, it would be helpful to do some PT to strengthen his core muscles and balance.  It would be kind of fruitless right now though since he would constantly be falling down.  Dr. Laux also said it wouldn't be a bad idea to have some oxygen for Ben at home.  Obviously, in three hours we talked about a lot more than that but those are the things that stand out.

sorry...bad picture quality, but Thank You Dr. Laux!

There was this awesome ball thing in the lobby downstairs that Ben and I stared at forever while the guys arranged a taxi and did other odds and ends. 

In particular, there was a bobbing turtle that had an open mouth.  The balls would fall into it and the turtle would tip and send them on their way in another direction.  Ben started mimicking the turtle by putting his open palm under his mouth and doing an eating motion and sound.  It was adorable.  He screamed when I had to pull him away to get in the cab.

As a side note, this summer, the hospital will have a brand new building located downtown.  This will be nice for possible future visits to Chicago.

Grapes and a B-A-T-H

Ben has some developmental issues because of his Dravet Syndrome.  He is 2 1/2 and does not really speak beyond "hi", "no", "go-go-go-go" (from the Cat and the Hat theme song) "May-Mee" (a mix between Mom and Aimee...we think) "oh", "da" (which can mean anything) and "ow".  Consequently we have been trying to teach him some sign language.  Slowly but surely it is coming.  He can consistently sign;  more, bath, all gone, balloon, fish, Jesus, thank you, brush teeth and kitty.  He also waves and points really well.  Every few weeks or so he picks up another sign which is exactly what happened today.  We were having lunch and he pointed to the grapes on the counter.  I asked him if he wanted grapes and signed it.  He got excited and did the sign!  That was awesome for two reasons...1) He picked up the sign after just seeing it once and continued to use it and 2) He wanted to eat something.  We've been having major troubles with his appetite/pickiness etc...  It was great!  He signed it several times during the course of lunch.  

Signing "Grapes"

 

Recently, Andy told Ben that he was going to give him a bath.  

We have to spell out the word when we're just discussing the possibility of giving him a bath because he loves them and we don't want him to get excited too far in advance.  Back to the story...after he mentioned it to Ben, Andy came into our bathroom to get a towel for him.  When he came out of our room he found Ben in his bathtub with his jammies and his helmet on already for his bath.  It was a pretty cute moment!

Moments like these make me smile and sweeten the road that is often rough for this little guy.

Well hello!

Hi, I'm Aimee...

                                             This is my family!  Aren't they cute?

  I don't know why but this first post has been hard for me.  I don't know what to talk about for this first one but I decided I just needed to jump right in and do it or else it would never happen.  

I've already mentioned on my profile why I am starting a blog but maybe I'll just do it here too.  

1.  I have felt like I should add my testimony of the gospel of Jesus Christ to the many already online.  Our leaders have mentioned that this is an appropriate place to share our beliefs.  

2.  I also need to start documenting my life better.  I have been a poor example to my family of journaling.  Luckily, my amazing husband has picked it up as a habit for the last two years and I am so proud of him.  Hopefully a blog will be a good way for me to keep a history now too.

3.  I am a crafter.  I have been taking pictures each time I finish a project for a while now, but then they just sit there.  I would love to share them.  Granted, most of my ideas are not original.  Usually I find a tutorial online that I use.  With my new addiction to Pinterest, I am a believer that there will never be a shortage of inspiration.

4.  Last but not least, I have a desire to raise awareness of Dravet Syndrome.  My son has had seizures since he was 5 1/2 months old.  After a year and a half of not knowing and searching for answers, we finally received a diagnosis this summer of Dravet Syndrome.  Not a great prognosis but at least we know.  It was so helpful to me to read blogs of other mothers with children with Dravet Syndrome while I was coping with this new found knowledge.  I would like to do the same for others.  Also, the word needs to get out.  A lot of these kids are diagnosed much later than necessary because of ignorance.  Hopefully one step at a time we can raise awareness and have earlier diagnoses.   You can read more about our experience with Ben here.

 I figured the new year would be a good time to start this blogging adventure.  So here I go!

p.s. Hopefully I can figure out how to get a cute blog design going soon too.  Little by little...