Thursday, January 31, 2013

Randomness (in no particular order)

I have a whole bunch of stuff to mention briefly...

First of all, we are 1/12 of the way through the year.
I like to take the opportunity at the beginning of each new month to evaluate how I'm doing with my goals...kind of recommit.
I think I need to do a whole lot more work in the eating and exercising department :)

We've made progress with Ben's monitor.  I've been in touch with the company.  At first, the woman I spoke with was kind of defensive and told me that their system never false alarms and that it's the best in the world and that she'd never heard about any problems like this from any other customers.
She was accommodating though and offered to send us a new system if that was what we wanted.  She also offered some suggestions as to what we could change with the one we had and see if they made any difference.  She said they would do whatever we wanted...she just didn't want us to give up on the monitor yet.  I told her we'd make the changes and get back to her.
She had asked us to change the response time to 13 seconds, secure the cord to the bed so there was no chance of it moving, and to move the monitor off the floor.
Within the next couple of days after making the changes we had more false alarms and another seizure without an alarm.  Arrrrrrgh!
I called the company again and the woman said she believed we had a faulty sensor and asked us to send it back (luckily I had kept the box, otherwise it would have been a very awkward thing to ship) and they would send a new one out immediately.
Sounded good to me.
My heart kind of sank a little when I removed the sensor from Ben's bed.
A couple of the thin, plastic "prongs" on the sensor were bent...a little bit wrinkled if you will.
Ben must have wiggled around a bunch and slept on it funny.
Was this what was causing the problems?
Another call to Texas...
I told my friend what I had found and she assured me that whatever the problem they were happy to replace it and not to worry about it at all.
Very good...hopefully we'll receive the new one soon and it will work :)

I love it when I open the refrigerator and see this...

...not the mess, but a fully stocked keto shelf.  21 meals here.  Most of them require additional ingredients that will be measured out at the time of consumption but the main part is there and ready to go.  It makes meal time much more slick.

Here is Ben posing (with his eyes closed as usual), happy as a lark eating his favorite snack, popcorn, with Dad.

 Parent day in orchestra with Josh.  I'm so glad he's still enjoying the cello!

 On a recent trip visiting Andy's parents, his mom gave us one of his old vests.
When we got home I just stuck it in Ben's dresser and forgot about it.
The other day Ben was pretty adamant that he be able to choose his own clothes.
He REALLY wanted to wear the vest :)
I started snapping some pictures...

 I can't believe I caught him cross-eyed :)

This is something he does when he knows he's got an audience...he rolls his eyes back (eventually closing them), sticks out his tongue and lets his head go limp.  Silly guy!

He always wants to see the pictures after he poses.
It was kind of hilarious because immediately after he looked at these he started tugging on the vest and wanted me to take it off.  Maybe he thought it made him look fat :)

Lots and lots of snow the last little while.  The kids enjoy going out and helping Andy shovel.

It might seem kind of silly to post this but it was a bright spot in my day this week...
I really enjoy a state wide show called Studio 5.  They have all kinds of stuff on it; crafts, recipes, fashion, fitness plus much more.  If I'm home at 11:00 a.m. on weekdays I usually am watching it.
Tuesday I had it on and left the room for a second.  When I came back I saw a familiar face.
My cousin's wife was talking about decorating your home beautifully and child friendly.
Fun to see her there.  She's a sweetheart.

My neighbor is organizing/decorating her sewing room.  I fell in love with these colorful boxes that she found at Home Depot or Lowe's (can't remember which).  There are 8 or 9 colors and she has organized all her fabric scraps into a color coordinating box.  Genius!
I would love to do the same but there's just not room in my craft corner.
Maybe down the road when my fabric stash has taken over the whole downstairs family room I will remember to do this.  Ha!

Josh had a report (paper and presentation) due today.  He's had the assignment for a couple of months but somewhere along the line I missed a memo or two :)
Last week I ended up emailing his teacher and finding out all the details.  Details such as it was due in less than two weeks, needing a certain amount of sources, a paper and a bibliography and a visual aid for his presentation.  Josh really wanted to do a PowerPoint.  Andy helped him out with that part and I helped him with his paper.  Boy did I learn all about how a car engine works :)
I love how Josh's mind works.  He comes up with the cutest way of saying things.  We had a few late nights earlier this week but we got everything taken care of.  He was a trooper and I was so proud of him when he presented today.  He was a bit shy and uncomfortable right at first but he warmed up and seemed to enjoy himself.  The kids responded well to him and at the end he was grinning from ear to ear.
Way to go Josh!
(Though I must say, we're all a bit relieved it's over :)

I went to brunch with my mom and a friend today.  I had to get a picture of Mom's Mega Pancake!  It was a good thing the waitress warned Mom about the size or else she would have ended up with two of these!
Not only was it impressive size wise but it had a fantastic flavor too!

Ben is so attached to his Bapas.  Sunday evening, about 20-30 minutes before he was due, we told Ben that Bapa was coming.  He ran to the window and stood there watching and waiting until he arrived.
So darling!

This is another one of those posts where if you're not a very close relative, you probably didn't make it through.  I don't blame you...just a lot of randomness that is mostly just meaningful to me.
It's good for me to write about it though and record those little moments in life.

Blue, Glue Scarf

So an idea came to me for another knit scarf.

I cut two pieces of knit to the length and width that I wanted.
Then I took one of the pieces and folded the end over on top of itself and cut (at the fold) half of a flower...much like the way you cut out hearts in elementary school. 
Next I just took pieces of doilies that I had cut up and hot glued them to the back of the top layer of the scarf.  I repeated this a few times on both ends and then added some lace to the edges.
I glued the second layer of the scarf to the first to cover up the messy back and then last minute decided to glue on the flowers I had cut out to give it some dimension and more texture.

Whoops...I thought I had taken more pictures but I guess I didn't.  Use your imagination to envision the whole thing :)

Thursday, January 24, 2013

Merry Christmas to Me!

I absolutely love our home but one thing that it lacks is a mudroom to put all the kids' STUFF.  It's always just been dumped in our front room right where anyone that came to our door could see it.
It's been driving me crazy...especially in the winter when there's so much more STUFF.

For years I've wanted to do something about it.  I love entryway organization furniture but our entryway is small and would not allow for much of anything.  I've looked for really skinny benches but nothing was thin enough.  Finally I decided that I should have one of our neighbors (who is a master wood worker) to build something for us.  For a couple of months before December I had it on my to do list to talk to Bill about it.
I was justifying it as a Christmas present to myself :)
I mentioned it to his wife once but never got around to talking to him about it.
One night Andy approached me and said that he couldn't keep it a secret any longer...Bill had told him to get together with me on the project.  Andy had talked to Bill about building something for me long before but Bill couldn't really move forward with it since Andy wasn't quite sure what I wanted.
(I don't know if that made sense :)
Anyway, I was thrilled but Andy was disappointed to have to spoil the surprise.  I didn't care...I was just so excited to finally be getting something to solve this problem.
We decided it might be better to put it around the corner in the front room.  There was more space for it there and it would hide the STUFF from view of the front door.  {The only problem with this is that no one can easily see Bill's beautiful handy work.}
Bill wasn't sure if he could get it done before Christmas, and he didn't but that's okay, it was well worth the wait.
It was delivered yesterday and I couldn't be more happy with it!


 I have some ideas about how to decorate the shelf.  I want to take my time and do it just it might take a while.
My plan is to get some baskets for the bottom for all the shoes and STUFF to go in.  The really short shelf will come in handy for library books, papers etc...

I had the kids pledge to never put their coats, hats, gloves, boots, shoes, books, or backpacks on the floor, couch, or table again.  There is absolutely no excuse now!

Ben was pretty cute.  He raised his hand during the pledge and while the kids were repeating all the things they wouldn't leave hanging around anymore, he would sign the ones he knew...hat, book, shoes.  He loves being a part of everything that goes on around him.

Thank you Bill!  Thank you Andy!
Now my Christmas is complete :)

Monday, January 21, 2013

Monitor Update

Things have continued to go awry with our new seizure monitor.
On Friday when I put Ben down for his nap I looked at his monitor and thought about turning it on.  I had been leaving it off for naps since we had been having so many false alarms and besides, as far as we knew, he had never had a seizure during a nap.
So, I left it off and then put myself down for a nap/rest/quiet time.
When Ben woke up a couple of hours later I went and got him out of his crib and noticed that he was very postictal.  He was limp and making the familiar jerking and repetitive movements common after one of his seizures.  My heart broke.  I pictured my little guy alone in his crib working through a seizure while I lay just a few yards away totally unaware.  Since Ben's communication is still pretty limited we aren't sure how conscious he is during a tonic clonic.  Could he tell I wasn't there with him?  Did he wonder why I didn't come?  How long did it last?  Was he face down in his pillow like he often is during a seizure in bed?  If I had turned the monitor on would it have worked this time?  I had to stop picturing the scene and wondering about all the questions buzzing through my mind.
He was safe and I was so very grateful.

Fast forward to Sunday afternoon.  We had put Ben down for his nap...this time the monitor was on.  I went downstairs to make some phone calls for my calling and Andy went to our bedroom for a nap.  According to Andy, a little while later, he heard Ben cry out.  Andy went in to make sure it wasn't a seizure.  Ben was just fine but Andy decided to stay in the room with him anyway and tried to make himself comfortable on the floor.  Ben went right back to sleep.  A while later, Andy, who was still awake, noticed Ben start seizing.  Like I had done, he waited to see if the alarm would go off.  No such luck.  The seizure was only about a minute but I was so glad Andy had been in the room with him.

I think a call to the company is in order.  Hopefully they can give us some suggestions as to how to make it work.  If not, I guess there are other options out there.  A fellow Dravet blogger mom mentioned to me that they just use a pulse oximeter and that has worked very well for them.  Also, on Pinterest just a few days ago I saw this...

...a nice little app to monitor breathing through a pulse oximeter "sock".  Pretty nifty!
I just wonder if Ben would keep that sock on.

Wednesday, January 16, 2013

Sew Easy Scarf

I've never worn scarves until this winter.  I love them!
I've seen some cute handmade scarves on Pinterest that I wanted to try my hand at.
I finally took the time to create one yesterday and I'm pretty happy with the outcome.

I decided on this super easy but cute tutorial by Ashley at Make it and Love it.
It took a little more time than I had planned but it truly was simple and fun!

I had never really worked with knit before and I don't have a walking foot but luckily, it turned out okay anyway :)

I might have to try another style soon.

Monitoring Faith

One of the greatest fears of a parent with a child that has severe epilepsy is SUDEP...Sudden Unexpected Death in EPilepsy.  I know it sounds very morbid but it is a very real fear.  Every night when I go to bed the thought crosses my mind that I could possibly lose him during the night.  Any time he naps longer than usual I start worrying about what I might find if I peek into his bedroom.
For the last few years I have just prayed every night that if Ben needed me that the Lord would help me to know and awaken me.  I have tried to have faith in this...I do have faith in this.  There have been times when I knew He did answer my prayer...times when Ben's seizure was silent and I woke up anyway.  But what about the Lord's will?  How do my faith and His will work into the equation to equal whatever the outcome?
My faith isn't faith if I'm only happy with the answer that I want.  My faith is only faith if I believe that whatever happens is what the Lord knows is best.
I do not however, believe in throwing up my hands and doing nothing in the way of protecting Ben from SUDEP.  I believe I can still have faith in the Lord's will and yet take action to try to prevent the unthinkable.
I don't know if any of that made sense but it does in my mind...kind of :)

At the Dravet Syndrome Conference this summer we heard about a seizure monitor that everyone seemed to love.  We mentioned this monitor once at a Sunday dinner with my family and commented that it was so expensive and didn't think we would buy one.  Not too long afterward, we received an envelope in the mail containing a large sum of money.  My sweet grandma tried to remain anonymous in her donation but her handwriting was too familiar.  Bless her!  We ordered the monitor (and got a smokin' deal on it since I bought it during Epilepsy Awareness Month).  When Andy installed it he adjusted the sensitivity level to the highest possible, tested it by imitating Ben's seizure movement with his hand, and we were satisfied.  My heart felt lighter as we put him to bed the next few nights.  However, one night the alarm went off shortly after we had put him down.  We ran in only to find him sitting up and worried about the loud noise coming from under his bed.  A false alarm. we turned the sensitivity level down.  Two more times over the next couple of days the alarm went off without a seizure.  What kind of movements was Ben making that the monitor was picking up? (we had set it so that it would go off only after 10 seconds of a rhythmic movement)...or was it just faulty?  We were trying to figure out what to do about this and then the other morning I woke up and Ben was seizing...silently.  He was face down in his pillow so I turned his head to the side and waited.  I wanted to see if the alarm went off.  I waited at least ten seconds and then couldn't handle it any more so I pulled him out and went ahead with the routine.  It was a longer one than he's had in a while...6 min.  We gave him Diastat seconds before it stopped.  Why hadn't the alarm gone off?
I have decided that we will give it one more chance.  We're going to move the sensitivity level back up to the highest possible and wait to turn it on until Ben's asleep.  Hopefully, that way, we won't have any more false alarms but will still pick up the next seizure.
If it fails again we will contact the company.

p.s.  Ben is addicted to the iPad.

Sometimes he even feels like he needs both at his disposal.

Monday, January 7, 2013

New Wheels

The time had come...
Our old van was....old and we were starting to feel it.
We needed to get a newer, more reliable vehicle (one that didn't shake coming down a canyon).

The day we got home from our trip Andy went to a dealer and found a Honda Odyssey and brought it home for me to look at.  The price was right, the mileage was low and it checked out great on CarFax.

There's a lot of details but to put it very briefly everything just fell into place.
We went in and bought the van that night.

We took Matt with us because I had to get a picture of the two of us in the front seat of our old van before we traded it in.

You see...Matt was born right the front seat of our van. 
It's a fun story to tell but I think I'll save it for another post :)

It was so cold that night.  Our fingers froze as we transferred all of our belongings from the old to the new.
 Andy was on cloud 9 as we drove home in our new (used) car.  He has told me since that this has been the least amount of buyer's remorse that he has ever felt with a car...apparently he always feels it to some degree.  

We're all very happy with this purchase (the kids included) and plan on having this van serve us for many years to come.

Bryanfest 2012

After everyone got better we traveled south to be with the Bryans for the rest of the year.

The gals did their favorite things and had a lot of fun {we even skyped Andy's oldest sister who lives in Tennessee}.  Next year we think we'll have the boys do their own version too.

(air freshener, boot socks, words to live by, mini peanut butter cups from Trader Jo's, breath mints, ice cream/cookie dough scoop)

 It wouldn't be a Bryan gathering without a play written and performed by the kids.  It's always fun to see what they come up with :)

Ben did a lot of playing with an old Sesame Street set and the other kids were very creative with how they spent their time.  Josh and Matt had both lost all of their computer/video game type time for the rest of the year so it was nice to have them active in other things during this vacation.  They all enjoyed spending time with Grandpa and Grandma, their cousins...and the new puppy.

The adults spent time chatting, playing games, doing puzzles (jigsaw and crossword), shopping, watching football and supervising kids :)

A bunch of us even got some sledding in on New Year's Eve.

After we were done sledding Andy took the kids back to the house and I took off on my x-country skis for a bit.  I hadn't been on them for two years so I had to get used to them again.
It was refreshing and very cold at first but once I got into my rhythm I warmed up and all was well.

A pleasant little vacation from normal life...and Ben only had one major seizure while we were there.