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.

Easter Crafts...Some Old, Some New

Since this is the first year of this blog I get to share all the stuff I've done in past years for each of the holidays.  So it looks like I've been busy, but really I haven't...not that busy.

First I'll share some things I've done in the last few years and then I'll show you one thing that I've been working on for the last few days...my one Easter project for this year.

Starting with Painted, Styrofoam, Beaded Eggs...I tried to make that name as long as I could!

I think I actually came up with this idea on my own!  (I usually have to see an idea first and then copy it).

I just bought a bunch of styrofoam eggs, painted them and then put glue on them in varying designs with a paintbrush.  Then I rolled them in tiny little colorful beads.  They've been kind of fun.

Next up, Torn Fabric Carrots

I made some of these last year and they were fine but then I made some more this year for my mother in law's birthday (she loves carrots) and I like them better so I will be showing you the new ones.

Here they are catching the early morning rays (sorry about the glare).

I'm not sure where the idea for these came from...not from a blog, but I may have seen a similar idea in person somewhere.  Anyway, I've seen things like this online since but I feel like I can kind of take credit for these.

I bought styrofoam cones and chiseled down the sharp edge at the bottom to round it off.  Then I took strips of torn, orange fabric and wrapped and hot glued it to the cone.  For the stems I just took green raffia, tied it in a knot and hot glued it into a little hole that I dug out in the base of the cone.

Here's an inside shot.  Kind of fun!

I definitely remember where to give credit for the next one....Felt, Peep Bunny Bunting!

Dana, from danamadeit.com is super talented and I love her photography.  Her pictures are always bright and cheery.  She always has cute ideas and this bunting is no exception.  She gives full instructions and a pattern here.

A couple of years ago, my sister and I had a fun day making these together. 

I'm glad she saw these and wanted to try her hand at them.  It was tons of fun!

(On a quick side note, when held up to the light you can see the ribbon running through the ears.  Angie's husband dubbed them "Rambunnies" because of this and my husband came up with this cutie...

He loves to fool around in Photoshop.  My favorite part is the pink beard.

It's embarrassing to admit but I don't even really know who Rambo is...it's still pretty funny though.)

 

Okay...moving on to Simple Fabric Bunnies

 

I don't really have a good name for them.  This was my inspiration...so cute...hers were little sachets.  I thought it would be cute to make them in varying sizes.  So here's my version...

 

 

I love the simpleness of them.  I also love the fabric.  It's hard to see in this picture but it's kind of a faux eyelet look.  On the link above she gives you the pattern...super simple and cute!

And finally for my most recent project, Braided Fabric Easter Baskets

My inspiration was from Vanessa from V. and Co. (vanessachristensen.com)

She did these super cute baskets. 

Wow!  It looked awesome but time consuming and a lot of effort.  I wanted a similar look but quick and easy.

I decided to try something and my sister in law said I should do a tutorial so here it goes...

 

I started with a pile of fabric, 

 

a plastic lid from the food storage cans...you know the ones...they pile up because you get two new ones in every box, but why throw away the old ones 'cause hey, they might come in handy some day right?  Andy they did...today!  

 

I also had my handy dandy mini glue gun and some coordinating felt.

 

I traced the lid onto the felt and cut out two circles...one for the top and one for the bottom.  I then glued them on accordingly.

 

 

Next I took three strips of torn (very important because cut fabric just wouldn't have the same look) fabric, knotted them at the top and started braiding.  

 

This was the most time consuming part of the project but also kind of fun.  My strips were the width of the fabric...so kind of long (while I braided the ends got tangled up quite a bit) but it ended up being perfect for my needs.

Tie a knot at the bottom, trim excess fabric close to the knots on both ends, repeat 11 more times and you end up with this...

I'm realizing that Ben must have smudged my camera lens while playing with it recently.  It gives it a nice soft effect don't you think?

Anyway, start gluing the braids around the lid and then on top of themselves...does that make sense?

I did about 6 1/2 braids to get my desired height and then I started layering the top two coils with 2 1/2 more braids.  I felt like the basket was kind of shapeless and I thought that adding a little more dimension would help.  So on the second to the top coil I doubled up the braids and then on the top coil I tripled them.  As I was layering I also added the handle.  I took the last three braids and braided them together so I ended up with a super think braid.  I cut it to the size of handle I wanted, glued the ends together (I didn't want to knot them again because I didn't want the bulk).  I tried to flatten the ends a bit too when I glued them and then integrated them into the layering.  That's probably not a very good description but it's the best I can do.

 

I am very happy with the result.  I made one for each child in their favorite color.  Ben doesn't know it yet but his favorite color will be green :)

They're kind of small but hey, less candy is good right?

 

 

Yeah!  Homemade, sentimental Easter baskets that hopefully my kids will love and pull out even after they're married and look back on with fond memories.

Thanks for letting me share!