Tuesday, May 29, 2012

Memorial Day in Review

I was thrilled to actually have some flowers blooming this year to place on the headstones.  
I love my pink lilac that Mom gave me a few years ago.  It blooms a little later than the more traditional ones and so it was at just the perfect height of bloomage for this special day!
I learned at our second cemetery that you're not supposed to leave glass jars on the graves.  Whoops.
Now I know.

Abs and Uncle James

Proud Grandpas

Sweet Grandpa and Grandma Kidd

Ben was Grandpa's buddy all morning.  They went walking hand in hand at each cemetery smelling the flowers.

Ben wrapped up the morning with a staring seizure at our picnic in the park and promptly fell asleep in my arms.
He ended the day with another one.
It didn't matter that he woke up before six o'clock both mornings...I was just thrilled that he made it through the night :)

Friday, May 25, 2012

A Smattering of Random Tid Bits

Well, let's see here...
Soccer finished up a week ago.  I love watching my kids play and I know they have a lot of fun, but boy is it good to have Saturdays and evenings during the week back...free of games and practices.

Matt's team had really nice, official pictures taken the week before but he was really sick that day so we couldn't go.  I'm glad I was able to talk them all into posing again for a quick shot.

(I ran 23 miles to get to this last game of Matt's :)  That's what was on my training schedule so I timed it and routed it so that I would end up at the field in time for the game.  Never again will I run at 4 A.M. alone...even through streets that I felt were safe in the daytime and that I was very familiar with.
(missed you Trina!)

So Abby's single goal that she made a few weeks ago remained the only goal for the team the whole season.
Bless these girls' hearts though!  They played hard and were super fun to watch.

Wednesday, 2 of the Up to 3 ladies came for their last visit.  It's so fun to watch him play with the toys they bring.  He liked this frog puppet so I just stuck it in the back of his shirt to be silly but he wouldn't have it any other way after that.  If it fell out he had us put it back in and he resumed playing with the other toys.  It was pretty cute!

I know you can't tell by his face, but Ben really does love these ladies.  They've been great!  I love them too and we will miss having them in our home each month.

Abby had her 1st grade program yesterday.  She sure liked learning the songs and singing them around the house.  I love to watch Abby sing.  She puts her whole self into it!  I was amazed when she got up and recited a memorized paragraph so confidently.  I had no idea she was working on that.

Most of the time Abby's gaze was focused on the interpreter that was signing off to the side.

Way to go Abs!

I don't have any pictures of this but I think it is noteworthy.  About half way through the year Josh's teacher sent a note home saying she would like him to be a part of the Gifted and Talented class that met each week.  What fun!  Josh was eager to participate.  The last several weeks they've been working on Podcasts.  They wrote their own script and came up with their own props and everything.  The teacher of the class works with several different schools' gifted and talented programs and so she had a night last week where they all came together and showed off what they had done.  It was fun to sit with Josh and watch his podcast that he had done with his group. He had a big grin on the whole night.
Well done Josh!

I found this cute scene in Ben's bedroom after I put dinner together last night.
Ben had had a few minute long shake 'n stare seizure in the morning ( I don't know the technical terms for all the seizure types so sometimes I make up my own names).  Those always wear him out the most.  He had not slept well the night before and on top of it all he didn't have a nap due to Abby's program at the school.  Andy had gone in to play with his trains with him...I heard some crying after a quite a while and then it was quiet and this was the end result.
I think they slept for about 30 minutes before Andy tried to move his arm out from under Ben and he woke up.  I went and got him and sat down on the couch with him and he fell asleep again within minutes.  That really surprised me.  I enjoyed the snuggle and tried to catch a little shut eye myself...might as well...but couldn't really fall asleep.  After about 2 hours in that position I was able to wriggle my way out from under him and get some things done around the house while he continued to sleep.
Finally, at 9 p.m. I woke him up to give him his dinner and meds.  I knew that around 3 a.m. I would pay for that long nap that close to bed time. After dinner he went right to bed without a complaint...he saw the other kiddos going to bed and even suggested with his signs that it was time for him to go too.  Well, I thought he would be awake in his crib until midnight but not a peep was heard from him until early in the morning when he gave me my cue to come sleep on his floor.  Okay, he won't be able to go back to sleep for quite a while I thought.  Oh what joy when he only talked/signed to me for a few minutes before he lay back down and fell asleep (have you ever tried to read sign language in the dark?)

Sorry for the novel...I promise this is the last thing...it was too cute to pass up.
As I entered the living room from the kitchen to get Ben ready for bed, this is what greeted me.  How adorable is that?  I don't think I have ever seen Matt holding Ben on his lap like this (usually Ben won't stand for it and worms his way out of Matt's arms)
They sat there quietly playing with a new train app that we found for Ben yesterday.  (Ben has a bit of an obsession with trains)
Well, needless to say, it was a few more minutes before I had the heart to tear Ben away from his big brother.

Love it!

Seizure Cry

This morning at 6:30 I woke up on Ben's floor (my new bed) to the seizure cry.
Often when Ben has one of his tonic clonic (grand mal) seizures, he starts with a cry (this is a very good thing since sometimes he's in another room and I wouldn't know he was having a seizure otherwise). It is a very distinct cry because it is broken and jerky.  Every time I hear it my heart starts racing a little bit and I go into emergency mode.  One time I was in my local craft store and heard it.  I looked around me but couldn't fine the source.  It stopped but then I heard it again a minute later.  When I heard it a third time I went searching.  Finally I found a mother with a small girl in her cart who was crying (probably because she couldn't have something she wanted).  No seizure going on...apparently it was just how this little girl cried.
Well, back to this morning...
I got him out of bed and just held him in his room thinking it would be over quickly.  After about a minute I decided it wasn't going to stop soon and I needed to be timing it so I slipped out into the quiet living room.
I held him there for a few more minutes.  Andy came out and saw what was going on and grabbed the Diastat in case.  At five minutes I administered the medicine.  At ten minutes Andy gave him a priesthood blessing.  At 15 minutes I called 911.  I hesitated before I dialed because it's always such a big deal when they come.  Last time we called back in October at my parents' house the seizure stopped as the ambulance was on it's way.  They still came and checked everything out and then strongly encouraged us to take him up to the hospital anyway.  They kept him there for over an hour to observe him and make sure everything was okay.  We knew he was fine...we knew what to look for...there was really no need for us to be there but the paramedics told us to go.  Nothing against them...I know they're just doing their job, but we felt like we knew what to do and could handle it.  Anyway, all this went through my mind in the second before I called.  As I spoke with the woman I began crying...because that's what I do these days :)  I hadn't cried to the 911 operator since his first seizure...I felt so dumb.  After I sobbed out our address, phone number and what was happening... "Wait! Stop! Never Mind!"...he finished.  I'm so glad she asked if I still wanted an ambulance instead of just sending it on it's way to check things out.  I told her we were fine and breathed a big sigh of relief as I hung up.
Little, exhausted Ben fell asleep immediately.  I held him for a few minutes and then made him comfortable on the couch.

This seizure was scary to me not just because it lasted so long (I know this is relative since some kids with Dravet have seizures that go many times the length of this one),
but because Ben hasn't had a seizure in his sleep in ages.  
Seriously, I think it's been over a year.  He was still sleeping in our room at the time.  We were hesitant to move him in to his own room several weeks later but I got into two habits that helped put my mind at ease - 
1) I prayed each night that if Ben needed me I would be made aware (and then did my best to have faith in that prayer)
2) I made sure our bathroom fan was off so I could hear him...we've always slept with it on because we both like the white noise while we're trying to fall asleep.

Now I sleep in his room 1/2 the night anyway (as mentioned above) but I will continue in these two habits to help me rest easier the other 1/2.

So, thank goodness for the seizure cry even though I really don't like to hear it.

Monday, May 21, 2012

Thoughts on the Ketogenic Diet

So for the past two weeks we have been doing a not nearly as strict version of the keto diet.  Meaning, we've been only letting Ben eat the foods that he would be able to eat on the diet but we haven't been weighing them and giving him as small of portions as he would if we were doing the real thing.  
Our intent was to see if he would be able to handle eating just those foods for an extended period of time.
My understanding was that it wouldn't affect his seizures since he wouldn't be going into ketosis because he would be eating too much to have that happen...follow me?

playing with his cookie set

Ben surprised me and ate much more of the food than I expected.  There were only a few times where he absolutely refused to drink his cream.  I found out that he loves hot dogs but is not a fan of bacon.
We did have many hard moments that ended in a multitude of tears.
We ended up eating on the couch or in his bedroom a lot so he wouldn't see what everyone else was eating...especially when we got pizza last week.
Towards the end of the second week I noticed he had stopped asking for "fish" (crackers).
It was so hard to tell him no every time he asked.  

Singing with Elmo

Yesterday in church we sat in front of a family with little children.  Ben turned around and looked over the pew at one point and saw a little bowl of cheerios.  Oh boy did he get excited!  The mom knew Ben was on a special diet and felt so bad that she couldn't give him any.  Ben started screaming and so we took him out.
Then there's the sacrament...Ben really looks forward to the bread and water during Sacrament meeting.
At first I thought I could just distract him when it went by but he caught a glimpse.  I went ahead and passed it on down thinking he might not mind that much but that was not the case.  I had to have them hurry and pass back down a piece of bread to appease him.
Then in nursery he has to leave the room while the rest of the kids have their snacks.  I pack a sippy cup with water in it for him to drink as he roams the halls with a nursery worker during that time.
It breaks my heart.

Riding the "neigh" at Great Grandma O.'s house

Anyway, yesterday marked the end of the two weeks.  I was anxious yet hesitant to call the dietitian and tell her how things went.  I kind of thought I knew what she would say...but I didn't want to hear it.  She was very encouraged when I told her how he had done and feels that he would be a good candidate to have success on the diet.
Yup...I thought so.
I was hoping that the fact that he hadn't always finished the full amount of cream would be enough to discourage her but she didn't seem to worried and talked about ways we could either hide the cream in other things or adjust the ratio of the other parts of the diet to compensate.

"How were his seizures?" she asked.
Okay, so he typically has 2-3 tonic clonics a week and about the same of his staring/turning blue seizures.
During the two weeks of the trial he only had one tonic clonic and no staring seizures.
His myoclonics (the quick jerks) did not seem to decrease at all.
I asked her if it was possible to have seen a change in his seizures even though we weren't really doing the diet.  She said "of course"...he was probably in mild ketosis during those two weeks.
I hadn't understood that and thought that ketosis was something you arrive at after a period of time not something that has different levels you can achieve.
So...if he did that well while only slightly mimicking the diet, how well would he do if we went ahead and hospitalized him and really went for it?
I should probably be really excited at this realization but I'm ashamed to admit I'm not jumping up and down.  
This is hard...really hard...emotionally, physically and it effects the whole family...not just Ben.

I asked her a couple of questions that I had while reading the book that is required before initiating the diet.
It talked about the breath of the child changing scent.  The book described it as a sweet smell.
I noticed, even when we did the two day trial several weeks ago that he had what I call "sick breath".
A feverish breath.  It happened again during these two weeks.  Sometimes it is really strong.
The dietitian said that yes, she has heard it described similarly...sick as opposed to sweet.
I know it sounds really silly but I used to enjoy when Ben was close to me and he would breath in my face.  I always thought he had a precious little smell to his breath.  I don't want him to lose his sweet baby breath.
The other question was about Ben's understanding of this diet.
The book stated several times that many kids on the diet are so strong and will refuse tempting foods that are offered to them because they don't want to have the seizures.  Well what about the kids that don't understand that?  How do you explain to your two year old that doesn't really have the understanding of a two year old that he can't eat what everyone else eats because it's bad for him?
I asked the dietitian if she had any ideas of how we could help him comprehend this.
She suggested to talk to him about it a lot...even if we think he's not understanding.
She also said to start using a sign for "seizure" and try and associate it with the foods that he can't have.
Hmmmmm...okay.  An interesting thought.  I wonder if there's a way that he could understand a sign for something that's intangible.  I guess he knows the sign for "hurt" and uses it appropriately.  He uses "thank you" and "more"...maybe we could help him get it.  I just don't know if he recognizes what is happening to him when he seizes.  Does he even remember his seizures?  It will be interesting to try.

Anyway, after I got off the phone with Eliza I cried.  I cried and prayed that I would have help to know what to do and to be able to do it.  I prayed that Ben would be able to handle this if we decide to do it.  I prayed for strength.
I've been crying an awful lot lately (I still don't think this new med has kicked in...maybe it's just not going to work for me).  My poor Benji has been seeing me cry too much.  Bless his heart...each time he recognizes that I'm crying he immediately puts his arms out to me to give me a hug and then he looks closely at my face and wipes away my tears with his fingertip.  It's precious.  
Sometimes we cry together and we hold each other.

Since Ben was napping this time I wiped away my own tears and went and rested on my bed for the remainder of "quiet time".  I knew that I wouldn't be able to fall asleep so I picked up a book that I'm totally engrossed in.  Nie Nie's book...Heaven is Here.
I was just at the part where the plane crashes and so I cried through that whole chapter.
And of course my thoughts then turned to how things could be much worse for my little Ben and I shouldn't feel sorry for myself.  The words from another inspiring blog that I follow (The Sullengers) came to my mind... "I can do hard things".  I should probably have that put on a plaque to place in my house if we end up doing this diet.
I just wish that I could help my little guy understand that he can do hard things too...and that there is a purpose behind this particular hard thing.

Love that guy!

Friday, May 18, 2012

A busy day in the Craft Corner

Thunder, Lightning and Rain have been the main characters on our sky stage this morning.
I've been in heaven.   As far as I'm concerned, this is the best kind of weather.

Yesterday I spent a good few hours in my craft corner.  
Let me show you what I came up with.

I had a baby shower to go to last night and so I was going to try and whip up one of these...

donswife.blogspot.com (Apostrophe Designs)
Aren't they cute?
It looked like a pretty slick method to do a baby blanket.
I was about 45 minutes into it before I realized what I so often do...my measurements had needed to be more exact.  My mom always teases me about how I cook because I don't always measure everything.  Sometimes you just don't have to right?  Well, I know it's really important to be more exact in sewing but I thought I could get away with hurrying through this one.  Not so much.  So, when I realized it wasn't going to work I went to plan B and ended up with these.

Burp cloths are kind of my go to when I want to make a gift but don't have a whole lot of time.
I think I've mentioned before on here that I like to pair them with a package of diapers and this time I even went so far as to put in a cute bottle of baby lotion as well.
I love this big fat bee...

On to project #2...
I spray painted these a long time ago...back when I made these, but they've just been sitting on my counter downstairs since then.

They are just dollar store silver serving trays.  I saw the cute idea on Pinterest to use trays as magnet boards.
I bent up a paper clip and hot glued it to the back of each tray 

and then hung them from small Command Strips on the wall. 

I love my little magnet boards...so simple and fun.
I printed off a bunch of my favorite quotes (once again Pinterest)
to put on the boards.

I also thought they would be fun to use when I'm sewing from a pattern and I can have it hanging up in front of me instead of lost in the clutter of fabric on my counter.

At the same time I spray painted the trays, I also did these...

I bought a bunch of odd sized/shaped pitchers from the D.I. and made them mine.  I love what a can of spray paint can do :)

They sit on my bathroom counter downstairs.

Finally, the project that I am most proud of from yesterday...
I have this friend who is such a sweet heart and I love her to death.  I've known her since I was in high school where I met her twin sisters that are my age (they are also treasured friends).  Through the years we have stayed close.  She invited me to attend her book group a few years ago and I met some lovely ladies there.  It was such a fun evening to look forward to each month.  The book group has been discontinued since then so I don't see her as often any more but it's always worth it when I am able to drive out and visit.
Yesterday was her birthday.  I wanted to do something special.
I hopped on Pinterest for inspiration and saw this...

This is from an adorable Etsy shop called "Nellie and Elsie" by Jess Sharp.  Go check it out...she has some gorgeous things!

Anyway...I thought it was a way fun idea for my book loving friend.  I decided I wanted to put her name on it and really dress it up with all kinds of old fashioned embellishments.  I went to town...literally...and bought a ton of fun things at a local book/toy/scrapbook store.  They had just the things.  I also bought paperback editions of Pride and Prejudice and Sense and Sensibility.  To be completely honest, it was rather difficult for me to cut into those beautiful books and ruin them...I got over it though.  This is funny but I didn't even notice that the picture above was a "Pride and Prejudice Bunting" until I went to the site to get the picture.  

I had such fun making this and just hoped my friend would enjoy it as much as I enjoyed making it.
It didn't take too long and I was very pleased with the final product...

As I was cutting out the triangles I enjoyed reading the random pages I had selected and imagining the scene from the classic (really long version) movie.

The books that I bought were on the small side so I had to take two pages and sew them together to get a triangle as big as I wanted. 

I love it and I think she does too!
Happy Birthday Jules!
I might have to make one of these for me too:)