GOALS

Well, I mentioned that something was brewing at my house in my last post. 

This is it!

Our sweet neighbors moved this weekend and I wanted to do something for them.  My neighbor on the other side of me and another friend are on the "quilt in a week" program :)

They're awfully good at throwing together a quilt in a jiffy.  So a week ago Saturday I mentioned to my neighbor that maybe we could do a quilt.  

Monday we pooled our fabric together from our stashes and started piecing.  Wednesday afternoon we had it to the quilter.  She had it back in our hands the next day.  I think she did an amazing job!

Thanks so much Leisha!

Thursday night, my two friends and I got together and bound it.  In the time that I did about a foot, they finished the rest of it.  I got my binding genes from my mom :)

Friday night we took it over to my moving neighbors.  They were so grateful and a bit emotional.  I, of course, was emotional too.  They have been fantastic neighbors and we love them.  

The husband told me later that he has plans to build a quilt hanger for it.  We told them it was just the kind of quilt to throw on their couch or at the end of their bed but they think it is "just the most beautiful thing" and they insist on displaying it on their wall.

So, that was one of my goals this last week...to make a quilt...and it happened!

Another one of my goals this past week was to run 20 miles on Saturday.

My two quilting friends are also running friends.  The three of us along with a bunch of other people drove 20 miles up the canyon and started running down.  

I am amazed each time I do a long run at how my body responds.  The last 2 or 3 miles of the run my mind is telling my body that there is no way I can go any further.  When I finish I feel like the was absolutely the last step I could have taken.  However, when I do three more miles two weeks later my body is able to do it.  I started training on my own but the last two long runs I've had Trina by my side and we just chatter the whole time.  It makes the time go quickly.  I tried to talk her into doing the marathon with me but she is otherwise engaged that day.  I told her to record her talking for 5 hours for me to keep me company during the marathon :)

The last goal I will mention also happened on Saturday.

My little Abby enjoys playing on her soccer team, but bless their hearts, they haven't won a game yet...they haven't even scored one goal this whole season.

Well, that is they hadn't until Saturday.

Abby's not the go getter kind of soccer player but she'll kick it hard if it comes right to her.  A corner kick from the other team came right in front of her and she kicked it towards the goal.  I screamed as it barely went into the side of the net!  Everyone was so excited.  She was so surprised that it had gone in.  The look on her face was priceless.  That won the game for them too since the other team didn't score. 

It was a very proud moment!

I love this picture...especially the gap in the teeth.  She's not in pain as it appears, that was just the look on her face as she was running :)

Congratulations Abby!  You scored a GOAL!

Ketchup/ Catsup/ Catch Up

Happy Birthday Grandpa "O." (a week ago).

When I told Josh it was your birthday he really wanted to take flowers up and visit your grave.  However, our day was extremely hectic and so I told him we would do it later. 

We made it up on Monday night.  I hope you don't mind the kids wore their jammies.  I knew by the time we got home it would be late and I can't abide trying to get the kids ready for bed when they're already tired.  So we got ready for bed before we left.  Although, the kids talked us into stopping by Aggie Ice Cream afterward (it took a lot of convincing - not!) so they did have to rebrush their teeth when we got home.

It was a pleasant visit...short on account of Ben, but very pleasant.

I always leave a flower for Janeen too.  My heart breaks for you and Grandma.  I can't imagine losing a baby.  Now you are with her though.  It will be a happy reunion when Grandma comes.  We're doing our best to keep her happy and comfortable until that time comes though.

Thank you for being you Grandpa.  I have happy memories of the farm, your jokes and your tough love.

I love you.  We all love you and you are missed.

Ben had his preschool testing today to see if he qualifies for Special Ed.  

We met with the classroom teacher, the Physical Therapist and the Speech Pathologist.  

Ben played really well with the PT while the other two talked to me and asked questions about Ben.  But then it was time for Ben to come to the table and work a little bit and he didn't want any of that.  He did get very excited wen he saw the fish tank though.  They let him feed the fish and he thought that was pretty neat.  He did not sit quietly and show them what he knew though.  There were a lot of "no"s and squirmings off my lap.  I promised the teachers that he's not always so grumpy.  They promptly assured me that they found him adorable and he was just fine.  I know that they will love him as they get to know him better but he sure wanted to let them know today that he has a stubborn side too. 

They even let him feed the turtle a worm.  :)  

The turtle was not in a very active mode and so I don't think Ben even noticed any life in the box.  He wasn't being patient enough to wait and watch him poke his head out.

It was kind of a fun hour because Josh went to this same preschool when he was Ben's age.  They loved Josh and asked how he was doing and said that watching Ben was like having little Josh running around all over again.  All three are very nice ladies and I think Ben will enjoy his time there.  

As far as projects go, all I can say is something's been a brewin' at my house.

Further details to come...

Saturdays: Shin Splints, Soccer, Seaizures and Sprinklers!

This time of year Saturdays = soccer.  This is the first year we've had two kids in soccer so the schedule's been a little more hectic.  Last week we got Matt to his game a little late.  Right off the bat a kid from the other team scored.  When he saw that he said, "They need me in there."  Ummmm...I hope he's not getting too confident. 

 Soon after he was put on the field and scored five goals over the course of the game.  At the same time, Abby was on a different field realizing that she really enjoys being goalie.  Andy said she stopped several goals and didn't seem afraid to go right up to the ball and pick it up. 

The last couple of weeks Saturdays have also meant seizures for Ben. 

 (He loves to play on the playground when we go to soccer games...especially the slides.)

 Last Saturday he had a mild seizure during each soccer game.  Then for the whole week he didn't have any other than his myoclonics.

I've been waiting and warning babysitters that he's due for a big one but it didn't happen until today.  

Andy's parents took us out to lunch after soccer.  We went to a fun new place in town. 

 Of course, Ben was not happy to sit and eat but wanted to be outside walking around.  Nancy was kind enough to oblige.  Josh went with them since he had finished his lunch.  After a few minutes he came running back in and said that Ben was having a seizure.  I went outside and he was going strong.  It lasted a couple of minutes and then he was out cold. 

 As Ben was sleeping in my arms outside the restaurant, Merill came out with these chocolate mustaches for the kids.

When you're training for a marathon Saturdays also mean long runs.  Only every other Saturday is a super long run though.  Last week I did 17 with a good friend.  It makes the time go faster when you're talking.  It truly was a miracle that we did it.  For me because of my injuries and for her because she has been out for a while with foot surgery.  I think the longest she had gone since running again was 8.   She was a trooper.  But boy were we shuffling at the end :)  Thanks Trina!  It was a blast.

So today I only did 8.  Next week I'm aimin' for 20.  I'm pretty much scared.  I'll let you know how it goes.

Well...sprinklers.  Abby and Matt have been begging the last several weeks to run around in the sprinklers.  We hadn't been able to convince them that they would be freezing if they were wet in 60 degree weather.

Today, it was definitely warm enough so Andy was kind enough to set it up for them and give them the go ahead while I rested my head on a pillow for a while.  (Thanks Hon :)

Josh is out of course because of his foot so it was just Abby and Matt...

 

for a while anyway...

Andy said he just couldn't help it.  Ben was standing pitifully at the window looking out at the other two.  So he took him out to just watch.  However, one thing led to another...

He had such fun!

And his helmet dried out nicely.

One other thing that we've been doing the last few Saturdays (It didn't start with an "s" and so I didn't put it in the title) is indoctrinating Abby on Anne and Gil.  

I figured it was time she needed to expand her horizons beyond Star Wars and move on to some classic chic flicks.  You can't get more classic than this:

She seems to be really enjoying it even with me jumping in and explaining things and reminding her to pay attention because "this is an important part".

I'm sure next Saturday will be filled with more of the same; running, soccer, maybe sprinklers, hopefully some Anne but we can do without the seizures.

You Know Your Children are Star Wars Fanatics When...

 First off, I have to apologize for my last two posts.  They were both quite negative.  This post is much more lighthearted and will hopefully not discourage you from reading my blog like the last two probably did...

Anyway...

In the last four days I have had three moments when I thought, "Wow, maybe my kids watch a little too much Star Wars.

The first one was on Saturday when the kids were allowed to choose a movie to watch together.  The fight I mean, discussion that ensued was not about which of the many, many movies we own but which episode of Star Wars to watch...there wasn't even a question that it would be Star Wars.  (I think Episode 6 won).

Just for the record...I try and encourage the older movies.  They have seen episode one a few times, episode two maybe once where we skipped the sandpeople scene and episode three never.  I have not even seen episode three.  We'll keep it that way.  The old ones are just classic.  I know I didn't appreciate them when I was younger so it's kind of fun to see my kids enjoying them now that I enjoy them too.

The second moment was last night when we were doing "Family Home Weeding" as Andy called it.  We were tackling the weeds in our newly planted area out front.  Ben was in his stroller as usual.  I would so love to let him roam free but I just wouldn't be able to keep my eye on him while I work so he ends up in the stroller.  Anyway, I mentioned to him that he was a trooper.  Abby immediately responded with, "Yah, a Storm Trooper!"  Ha!

I wonder where she got that idea :)

And finally, today, while eating lunch, Matt, in all seriousness, was explaining "water vador" to me.  How the water collects in the air and clouds and then comes down as rain.  That's "water vador".

Oh Boy!  Do I love my kids :) but maybe we need to cut down on the Star Wars...just a bit...

By the way, all of these pictures were taken last Christmas break at Grandma and Grandpa Bryan's house.  The kids always put on cute and creative plays.  

Always a joy!

I also have to give credit to Andy, the genius behind Josh's Darth Mal mask.  Well done hon!

Whoops...I missed my meds!

First off, let me say thank you to those of you who commented on my last post.  Complete strangers offered words of comfort and hope as well as good friends and wonderful family.

I forgot to add on that post that Ben did have some positive moments that day also.  He picked up on two new signs..."pig" and "baby".  I should have taught him "baby" ages ago since he loves them so much.  He gets excited every time he sees one in person or on a movie or in a book.  It's always exciting for me to see him start using a new sign.  Some other recent ones include "help", "juice", and "car".  It's wonderful to be able to communicate more and more with him.  It makes everyone happier.  Speaking of happier...that's how things have been around here the last two days.  Ben's eating normal food again until we decide what to do about the diet.  He's not sick at all like I suspected during the diet trial...so that's a "yeah!"

Well, I said above that things have been happier here...until this evening...

In a nutshell, I have been on antidepressants for the last 13 years.  I've gotten to a point where I'm not on a very large dose and I only take it every few days because I don't feel like I need it daily.  Sometimes that makes for a hard crash though if I go too long without it.  

Things all kind of came to a point tonight.  I had had a poor moment with Josh during his piano lesson (what is it about piano lessons and attitudes?) Ben was pretty needy (wanting me to hold him), I realized I needed to run to WalMart fast and buy sweats for Matt and Abby to wear under their soccer uniforms for both of their games tonight since it was so cold outside..., I was planning on picking up pizza for dinner, and I was running late (as usual).  

I left the house (and a crying Ben) at about ten minutes to five.  Our first soccer game was at 5:30.  I left in a terrible mood because I was mad at myself for being behind schedule and I knew it would make the rest of the evening behind schedule.  While standing in line to check out at WalMart I did something that I do when I'm giving into my depressive state.  I picked up a Reese's Peanut Butter Cup and added it to my "to buy" pile.  I eat...and it's usually chocolate...it's feels even better if I'm trying to lose weight at the time.  I ate it all up as I drove from WalMart to Little Caesar's.  I sat in line too long and then when I got to the window the poor kid asked if it was okay if the cheese was going to take 2 or 3 minutes longer.  I looked at the clock, I looked back at him and must have looked somewhat upset because he very sincerely apologized.  I reassured him that it wasn't his fault and then asked if I could just have two pepperonis instead please.  I knew my kids would not be happy.  Andy's the only one that likes pepperoni...and even though we tell the kids to just take it off, we know it pulls all the cheese off with it..and who likes pizza without cheese?  Anyway, something to look forward to when I got home :)

Oh ya, and on the way home I realized that Josh had scouts at the same time as the first soccer game...in like five minutes!

I dreaded entering the house when I got home.  I knew I would be a mess trying to get the kids ready for soccer and eat dinner and be nice about it all at the same time.  I definitely did not succeed at being nice.  When I'm in that kind of mood it's just such a downward spiral.  

Bless Andy's heart...he knew what a mess I was and so he had tried to do everything he could to be helpful and have the kids ready as much as he could when I got home.  

I won't even try and recount what occurred in those few minutes but I will say that it included two trips for me into the bathroom so I could just cry...which I had absolutely no time to be doing.

I ended up grabbing Abby and Josh, dropping Josh off at scouts and taking Abby to her game.  We were almost 15 minutes late.  Andy and the boys followed a bit later.  

 

  A friend that I hadn't seen in a while walked up to me right away and talked to me for quite a while.  That helped me normalize a little bit.  A few minutes after Andy came with the boys it was time to go pick Josh up from scouts so he took Matt and did just that and then headed to Matt's game.  I stayed with Abby and Ben (who insisted on playing on the playground).

As I stood there and watched Abby's game I realized how ridiculous it had been for me to stress out so much about their soccer clothes.  For some reason, I had thought it was important that their sweats match their uniforms.  There were girls running around out there in all kinds of colors and things.  I totally could have found stuff at home that would have worked.  What was my deal?

Ben had a small seizure on the playground and after Abby's game (in which she played very hard) we moved on to Matt's.  

My mood had mellowed but I was still not happy with myself.

The thing is, I get so upset about how upset I get.  I feel awful for the way I treat my family and that just makes me more depressed.  Not a good cycle.  

Anyway, Matt's game was a delight!  This was his first soccer game ever.  We kind of knew that he would enjoy it.  He's always been the athlete of the family.  He was right in there kicking away, not afraid of anything.  He had such a grin on his face the whole game (unless he had game face on that is).  He even scored a goal or two.  After the game, because there was a bit of confusion as to how many he had actually scored, Andy said, "Matt, did you score one or two goals?"  Matt responded happily with, "I scored three!"   It made me happy to see him finally get to do what he's wanted to do for so long and excel at it also.

Ben was so excited to have another playground to play on.  He also had a small soccer game of his own going on with Dad.

Josh was a great support! 

I think I had cheered up sufficiently by the time the second game was over and don't worry...I've taken my medication now so I should be good to go for a few more days :)

Wow!  I don't know if I dare hit "publish" on this one.  I feel like maybe I've crossed the line between keeping it real and baring my soul that nobody really wants to know about.

Forgive me if it's the latter.

Dravet Syndrome Blues

Having a child with special needs is often a blessing.  However, there are some days that are quite challenging.  The last two days have been that way for me.

I don't ever want to sound like I'm complaining so if I do...please tell me!

I want to be a voice for Dravet Syndrome...my hope is that other Dravet moms (or any mother of a child with special needs for that matter) will read this and feel like there is someone out there that understands.

So if I ever cross the line into "pity party for me" territory please know that that is not my intention and kindly let me know...okay?

Back in January we were told by a specialist in Chicago that she would highly suggest trying the Ketogenic Diet for Ben's seizures (see this post).  I was afraid she was going to say that.  I had heard about it and how hard it was to implement and that it had only about a 50/50 chance of reducing seizures to any degree.

In March we saw our neurologist here and he supported us in that idea and had a dietitian contact us.  

She said that she would send us some sample meal plans to try with Ben to even see if he would comply with the diet before hospitalizing him to initiate the diet.  She told me the four main food groups in the K.D. were:

1. Cream

2. Fats (oils, mayo, butter etc...)

3. Very little protein

4. Very little fruits/veggies for carbs

She suggested that I try and get him to drink straight cream and eat straight butter and that if he would do those two things it would make life a lot easier on the diet.  Yuck!

 I received the email with the meal plans and was shocked by the portions of these things.

Here is a sample meal that we tried last night...

Every meal she sent starts with approximately 4 oz. of heavy whipping cream.  Thankfully we can dilute it with water :)

The rest of this meal includes 2 tsp. of ham, 1 Tbsp. of cooked carrots and 1 tsp. butter.

He wouldn't touch any of it.  

Earlier in the day he had a couple of sips of his "eggnog shake" (cream, oil, vanilla, strawberries and liquid egg) but was not impressed and 1 1/2 tsp. of peaches.  That was all he would eat of the diet.

It was super hard to keep him away from the rest of the family at meal times.  He and I went in another room during dinner.  All day he requested all the foods he loves with his sign language...popcorn, fish crackers, juice...he would cry each time I told him no.  Talk about a heart breaker!

Today it was somewhat better and at the same time worse.  Better because he was eating most of the foods given, but worse because I knew he was just eating them because he was famished and I kept seeing this pitiful face looking up at me as he ate.

For breakfast he gobbled down the Tablespoon of scrambled eggs and teaspoon of peaches and drank all of the cream.

For lunch, he again, eagerly ate his 1/2 hotdog (really? I can give him a whole 1/2?) and 1/2 tsp. ketchup.  At dinner time he was super sad because he had been asking for his other foods and we had been telling him no.  I made the kids prepare their own dinner (Andy was gone to meetings) of cereal as out of sight as possible so I could prepare Ben's 1 tsp. of ground beef and 2 Tbsp. of green beans with butter.  I sat him in my lap knowing he wouldn't touch it in the high chair.  He kept crying and crying.  All day he had acted very low physically (sitting on my lap most of the day and not having much energy to play) and emotionally (he's usually so happy and humorous but today he was just glum).  He was not himself and I had wondered if he was getting sick...he kind of had the sick breath going...or was he just starving?

After much crying he finally motioned for his bowl of dinner.  I brought the spoon to his lips and he ate all of it very quickly and wanted more.  Poor kid...I couldn't give him more!  He cried again...and wouldn't drink any of his cream. 

Since this was just a trial and I was emotionally at my wits end and out of meal plans anyway, I finally gave in and asked him if he wanted 'fish'.  Oh the joy!  The minute I put the fish in his lap he was a different boy...my boy!  He gobbled down about 2/3 of a bag and would have had more had I let him.  He was smiling and making his goofy faces again.  It was night and day.

I don't know what to think...would all that be worth it if it decreased his seizures a little?  Is it just this bad at the beginning but would get much better long term?  Should we really try going the tube feeding route (as the doctor suggested) if we can't get him to do the diet orally?  Would I be able to keep up with it all?

I called the dietitian with questions but have not heard back from her yet.

I don't know if I could take the emotional strain...I know it sounds silly but it truly did affect the entire family.

Hopefully we can be led by The Spirit and counseled to do what would be best for Ben.

Not only was the diet a hard thing for Ben today but he gave me quite a scare.

I often try and situate him with something that will keep him happy when I need to shower.  Sometimes he sits on my bed and looks at books.  Sometimes he will push books under the bathroom door to me (I end up with quite a pile by the end of my shower) and on rare occasions he happily occupies himself in another room.  Today he would have none of it.  He stood at the door and cried as I closed it.  I felt terrible but he had his helmet on so I knew he would be relatively safe and I desperately needed to shower.  I heard him crying through about half of my shower.  When I realized I didn't hear him any more I figured he had calmed down and started looking at books or had gone off and found Matt.  I finished my shower and got dressed.  When I opened the bathroom door I was shocked to find Ben lying face down on the floor, motionless.  Oh no! Was this my worst nightmare?  Although I don't like to dwell on it, somewhere in the back of my mind is always the thought that I might lose my angel someday.  Dravet Syndrome has a relatively high mortality rate.  Different scenarios go through my mind randomly and I might even say frequently.  I pray that they will never come to pass but the thought is always there.  

I knelt down and calling his name gently turned him over.  His eyelids slowly opened and he hung limp in my arms.  I had woken him up.  He must have had a seizure while crying at my door that just wasted him and he lay there sleeping.  He immediately fell back asleep as I cuddled him in my arms and wept.  

I know it sounds fairly dramatic but that's how it was in my mind.

I am forever grateful for every day I have with "my precious heart"...Ben.

Easter Festivites

Here's a wrap up of our Easter weekend.

The Easter Bunny comes on Saturday at our house.

The kids were so good and didn't delve in until I came out in the morning.  They had already been up for a while and just watched cartoons.  So patient!

Saturday was such a beautiful day.  I was able to go for a run with a good friend in the morning and then the rest of the day was spent outside with yard work...and yard play.  Abby desperately wanted to read to someone outside on the grass.  Matt obliged.

My two sweet cousins came and brought the kids an Easter surprise which included bubbles.  Who doesn't love a good bubble session?  It was so good for Ben to get out and run around in the grass.  He really hasn't done that a whole lot in his life.  I've resolved to let him do it more this summer closed safely in our backyard.  First I have to get our window wells covered.

Anyway, thank you so much Sarah and Rebecca!  You're always so sweet to remember the kids.

Andy was a very hard worker...our fire pit area is really coming together!

After the kids asked me all day for one I was finally able to put together a quick egg hunt downstairs.  (One blog I follow said that their tradition is to do a night hunt with flashlights.  How fun!  Maybe some year).

Anyway, the kids seemed happy with this and Josh very thoughtfully thanked me for it the next morning.

Here's my cute family before church the next day.  I gave up on tucking Matt's shirt in a long time ago.  It's just not even worth it to try anymore.

His tie is usually that spiffy looking too...he likes to dress himself...what can I say?

Oh boy do I love my cuties!  Andy's one of my cuties too :)

I neglected to add this picture to my last post of Easter crafts. 

Last year, Abby's classmates were each assigned a letter to dress up as for an Alphabet Parade.  Abby was assigned "E".  It was right before Easter so this is what I came up with.  It was fun and fast and I'm glad that she was happy with it.

This last picture is just kind of funny.  The kids made a fort downstairs and Sunday night I found these "Rules for the Fort" on my craft counter. 

My favorite is #3...No making fun of clubhouse name!

Hope everyone else had a beautiful Easter.