Oh boy, oh boy!

Everything is AWESOME!

I purchased the digi files of our Legoland photos (we're missing a few files and hoping to get that sorted out soon!).  But here are the gems we do have.  We loved Legoland and had a great time!  I highly recommend going with your kiddos ages 4-9 ish.

Jonas update July 2014

HUGE good news!  While there is still a lot going on and everything, I just wanted to share with you all that Jonas has been seizure free for 1 month!!!  30 WHOLE DAYS without seizures!  We are still tweaking meds and coming off some (and hopefully more...), but we have been so thrilled and THANKFUL for these recent seizure free days!

Also, Jonas is no longer on the keto diet.  We think it may have been helping slightly, but we discontinued after 4 months.  The pros (that were minimal at best) did not outweigh the terrible cons of the diet.  Doing the keto diet with Jonas was one of the hardest things I have ever done in my life, so major kudos to those that do it long term.  I would have loved for it to have worked and happily stuck with it, but it wasn't giving us the benefits we'd so hoped for.

But, again, the wonderful, fantastic, amazing news is that his newest medication (#7 I believe) is helping!  We just pray none of the scary side effects come upon Jonas!

Keep the prayers and good vibes coming, it's working!!!  Thank you!

One Year

I've been doing a lot of reflecting today...

This evening marks the one year anniversary of Jonas' first seizure.  I was still over the moon excited about a very unexpected pregnancy, that I had just found out about the day before, when it happened.  I have never in my life been so out-of-my-mind terrified while it was happening.  There have been some doozies since, like the first day the doctors told me I ought to consider brain surgery for Jonas.  Yeah, I was so physically ill over that thought that soon after the phone call I actually threw up.  Then, there was the phone call where we discussed the fact that Jonas was not a candidate for that particular type of surgery.  I cried huge body racking sobs for hours.  Scared to death of the ketogenic diet, we did it anyways.  Unfortunately, that has not been our answer either.  We have weaned him off the diet and he is again on a normal 4-year-old-boy diet which is great (the keto diet was SO incredibly hard on both him and me), but we are still without control over these seizures.  We recently started him on his 6th, nope, I think it's his 7th anti epileptic drug (AED).  We've surpassed all the "normal" first-line options have have moved on to the stronger/scarier side effect ones.

We are still in a state of uncertainty, but keep looking forward and hoping for a bright future for our Jonas.  Please keep the prayers on Jonas' behalf coming, we need them!  Thank you for all the love and concern over the past year!  Epilepsy is a marathon and we are deep in it.

Jonas update

You are probably ready for another update on Jonas' condition.  As you may have gathered, Jonas was found NOT to be a candidate for surgery.  This was really hard news to take, I was so hoping that surgery would be his miracle.  After talking with the doctors about some other options for Jonas, we decided to start him on the ketogenic diet.  Many people have wondered why we didn't consider a diet therapy before this point with Jonas, healing with food, and "it's more natural", right???  Well, this diet is anything but healthy and "natural".  It is very hard on both him and me, on top of the "not healthy" part of it all.  Jonas new diet consists of about 90% fat, 8% protein and 2% carbohydrates and everything has to be calculated for and weighed precisely.  There are no "free" foods for him, every tiny thing has to be accounted for.  There are many foods he cannot eat and has to take a slew of supplaments because he is no longer receiving the vitamins and minerals you'd get from eating a "normal" diet.  If you are interested in learning more about the ketogenic diet I highly recommend this book.  It's very interesting and a quick read.  Jonas' diet, growth and blood work are monitored closely by his "keto team" (which consists of 2 dietitians and a nurse practitioner, along with his regular neurologist and epileptologist).  The ketogenic diet is typically started in the hospital (as we did) and begun by fasting to let your body burn off all the sugars in your system.  This diet is supposed to keep your body in "starvation" mode, which creates ketones in your blood.  It's not quite fully understood what exactly is helping with keeping seizure activity down on the diet (again, read the book if you want to learn more...), but it works for over 1/2 the people on it ("working" can mean a variety of different things, from complete seizure freedom to 50% reduction in seizure activity).  We are still in the "tweaking" stage of the diet for him, and he has had several seizures since starting, but we have seen some changes in the severity and amount of seizures he's been having.  Hopefully we can work out all the kinks and get to a good place with this new therapy.  Thanks again to all our friends and family who have given us so much help and support through all of this.  And please, please keep those prayers for Jonas coming!

Update

I guess it's time for an update on Jonas.  My last post on his epilepsy was that we were waiting for more tests and excited about his new medication (#4).  Unfortunatly, Jonas has failed that medicine and is currently on his 5th anti-seizure medication (and still currently taking 3 of them daily), which gave us success for a couple weeks, but has shown signs of failing (more "break through" seizures) as well.  Talk of #6 is underway, but there is a school of thought on these medications that says once you fail 2-3 of these types of medicines there's only about a 5% chance of actually finding a medication that will reasonably control your seizures.  It's crazy how fast life can change and what you might find yourself contemplating...

There were some answers from December's tests/hospital stay.  The doctors are pretty sure his seizures are focal (meaning they originate from a single place and not from many parts of the brain), this is good news.  Because of the way his seizures "cluster" it muddled the information and they didn't get a super clear definition on where that focal point may be.  Jonas will be headed in for another couple day hospital stay with more testing to try and find his seizure focus soon.  The purpose for these tests is to find out if he'd be a good candidate for brain surgery.  Yes, I did just use the words "brain" and "surgery" in the same sentence discussing my baby boy.  I know this may sound totally nuts, but I am truly hoping that he will be a surgery candidate (depending on where the focus is and the risks involved with operating on that particular part of his brain).  They are pretty sure there's no way he would grow out of these seizures and surgery is pretty much the only way to possibly go off medications at some point.  (These medications are so hard on him, and us, and it breaks my heart for him to be taking so many).

There are certain diets out there that can help control seizures and we will be meeting with the neuro clinic's dieticians next month to discuss his diet options (ketogenic/modified atkins diet).  Both are low/no carb diets (and truthfully not very "healthy" diets...).  The ketogenic would be more restrictive for my carb-loving boy.  To be honest, these diets scare me, but I will do whatever it is that he needs.  Perhaps my own selfish carb-loving-ness is at the root of the scariness...  But seriously, how is a 4 year old supposed to understand why he can't have that cookie that he see's his friends eating.  I just don't know...  Maybe some of my fears wil be calmed by next month's consultation.  For a side note on the keto diet I have been following this blog that a mom of a kindergarten keto kid writes.

Prayers on Jonas' behalf are very much appreciated, keep them coming!  My biggest prayer right now is that they find the focus and can operate without much risk.  For many, it can take years to come to the place that we find ourselves in, it hasn't quite been 7 months since his first seizure, and even that feels like a different lifetime.

Please pray with us that we will find the right information to help Jonas and pray that we will have the strength to do what is best for him.  Thank you from the bottom of my heart for all your kindness and support!

O Christmas Tree!

Merry Christmas!!!

 

Merry Christmas!

Four years old.

I can't believe my babies are 4 today!

As I tucked them in bed last night and reminded them of their birthday, they both expressed their desire for balloons!  I was happy to oblige!  No parties or frills this year, not even home-made cupcakes...  The past few months have been rough, so I let myself off the hook a bit.  It was easy and I enjoyed my day with my two favorite 4-year-olds.

 

Decorations provided by King Soopers and Aunt Millie.  Cupcakes provided by King Soopers.  Presents provided by our wonderful friends and family!

 

 

(Jonas' atempt at holding up four fingers...)

 

Good job Elliott!

 

I think I only re-lit the candles 5 or 6 times this year.

 

These cupcakes were yummy!  Vanilla cupcakes with vanilla bean buttercream and vanilla cream filling.

 

The boys got these birthday crowns at preschool and they wore the ALL DAY LONG!  It was kinda funny because Elliott had a hard time saying "crown" and he kept calling it his birthday corn. 

I love these boys SO much!  I can't imagine my life without them.

A new awareness

This post is very personal and sensitive to me right now, probably always...

I've kept pretty quiet about this on the blog and social media, probably because I'm still trying to come to grips with this and understand all the facets of my life that are now forever changed.  My emotions are all still pretty raw over what has come to pass in recent months.

In June our lives had a major change come upon us.  On a Saturday evening, while visiting my family in Utah, Jonas had a seizure.  I was right there.  I witnessed all of it.  I had a major melt down-freak out-panic attack.  He was convulsing for about 1 minute, but it felt like an eternity.  He couldn't breath well and turned purple and my panic quadrupled.  My parents were away, but my sister was there and I screamed and screamed for help.  Becka came and called 911.  Jonas' seizure had ended and his color was returning and he had fallen asleep.  The only thing I was sure to do in this situation was to have him laying on his side.  I didn't realize sleep was normal after and I was quite anxious over his sleepyness.  The paramedics arrived and Jonas and I rode in the ambulance to the hospital.  I never want to do that again!  Jonas was breathing and stable, but still sleeping.  At the hospital they put in a line to draw blood for various tests.  He also had a head CT.  He had bonked his head earlier in the day and they wanted to check for head trauma.  His bloodwork and CT all came back normal and after a couple hours we were released.  We were told that it was probably just a one-time thing likely do to exhaustion.  Nerves still raw we went back to my parents house.  We were told if he had another to go to the children's hospital in Salt Lake because there really wasn't anything else they could do at that hospital.

We hoped for the best and believed that it was truely a one-time incident.  However, the next morning Jonas fell off the bench while eating breakfast and had another seizure, very similar to the previous night.  This one was slightly shorter.  My dad and brother gave Jonas a blessing and Jonas, my dad and I headed down to Salt Lake City.

At the children's hospital they ran some other tests, an EKG and a chest x-ray.  All were normal.  Being his second incident the doctor prescribed him an anti-convulsant medication that he would now be taking twice daily.  We also recieved a perscription for a "rescue" medication for a prolonged seizure.

The medication took Jonas a bit to get used too.  It made him really dizzy and uncoordinated for over a week.  He was such a champ and taking this medicine twice a day.  He had always hated taking medicine before this, so it was a major blessing that it wasn't a fight to get him to take it.

Our plan was to see a neurology specialist once we got home from our trip.  We stayed our entire planned 2+ weeks in Utah and made some great memories.

During the time this was all going on I had found out that I was pregnant!  I actually found out the day before the first seizure.  This was most unexpected and very exciting!  Unfortunately, soon after arriving back home to Colorado I miscarried.  Raw is the best word I can use to describe how I felt at that time.  This was my second natural pregnancy and my second miscarriage.  Luckily, I was able to take comfort in my two beautiful boys and not go into that deep depression I let myself get into after the first miscarriage.  I'm still terribly sad about it, but have felt bouyed up and have mostly come to accept it.

Once home, I made an appointment for Jonas to go see a pediatric neurologist and we were lucky to get in fairly quick.  During the appointment the doctor thought the two seizures he had in Utah were connected and could be considered one event.  The two doctors we saw at that visit both thought it was probably just a one-time occurance as well and thought that we should go off the daily medicine, but not til after a couple more tests.  Jonas was to have an EEG and an MRI.

The day after that first neuro visit, Jonas had another seizure.  After consulting with the doctor that day he decided to up Jonas' medication dose.  This was mid July and Jonas stayed seizure free through the tests.  Jonas had his EEG at the end of July and his MRI in mid August.  Then we had a follow up appointment at the neuro clinic.  Both the EEG and MRI came back normal and didn't show any strange brain activity or leisions.  Because of that mid July seizure the docs were a little hesitant for him to go off medication, but I felt strongly that we should try it and just see.  We didn't like the medication and the side effects.  It was causing Jonas to be more aggressive and physical and angry and we didn't like that at all.  They were ready to prescribe a different medication and had us take it with us "just in case".

Right after that visit we began to taper Jonas off the medicine (its not good to come off these types of medications too fast).  After a week or so the dose was pretty low and Jonas had another seizure.  At that point we decided to fill the new prescription and give this new medication a try and hope for no seizures and no crazy side effects.

The next couple months were a blur and a total nightmare.  The new medication didn't help and the doctors thought it could actually be making things worse (in some rare cases this can happen).  October was a mess of trying several different medicaitons, using the rescue meds frequently, adding in other rescue type meds on a daily base, a 13 hour ER visit because of uncrontrollable vomiting and prolonged and clustering seizures.  October 2013 was so incredible hard and completely exhausting.  My mom came out when it was particularly rough and ended up taking Elliott to Utah, which was such a blessing.  The ER visit happened while Elliott was gone and that was so great I didn't have to worry about him as I was caring for Jonas.  Matt was gone a lot of the month with one trip lasting 11 days.  I'm so glad October is over.

Jonas has tried and failed 3 seizure medicines and is now of his 4th.  This new one is showing promise and we are at "stable-enough" place to begin to taper off the medications that aren't helping (the doctors didn't want too many variables going on with the medicines so he wasn't going off the ones that weren't working, they were just adding new ones until he became "stable").  My poor baby is on 4 daily meds twice a day with a special vitamin with his morning doses and he has two types of "rescue" meds, for different types of emergencies.

Jonas' preschool is aware of everything and really supportive with our new trial.  They are trained on and keep some of his rescue meds at the school.  The poor guy has missed so many days the past few months and the meds are all still keeping him a bit foggy and uncoordinated and it's a struggle at school.

We are very excited to be tapering off the medications that aren't working and will hopefully be down to just the one before the end of the year.  We alse have a few more tests coming up in December.  He'll be having a sleep study and another EEG and another type of scan called a PET scan.  This EEG will be 5 days and he'll be inpatient at the children's hospital.  We are hoping to get lots of good and useful information from these tests and hopefully they will giude us where to go at this point.

I have been truly happy to work with the doctors and nurses at the neuro clinic.  They have been amazing and so compassionate.  I talk to them on nearly a daily basis reporting seizure activity and scheduling visits and tests and talking about Jonas' ever changing meds schedule and pretty much just everything.  I'm pretty sure Jonas' neurologist/epileptologist is actually younger than me (which made me feel a bit old) but I love that he's young and fresh and eager.  And all the nurses are great and they all know me pretty well now...

I don't really know if fortunate is the right word, but there is a gal at our church, whose daughter suffers from epilepsy as well, and she has been such a great support to have.  She's the chair person for a local epilepsy support group and I'm starting to get involved and find support through local groups. 

Oddly enough, November is Epilepsy Awareness Month, and the color is purple, so grab a purple ribbon or wear a purple shirt in support of Jonas and all others suffering from this disease!

I'm so grateful for my wonderful family and friends who've been so helpful and supportive during this hard time for our family.  We are so happy to be at a certain point of stability with Jonas and are eager for more information of what can be helpful for him.

 

Halloween 2013

Ahoy there Mateys!

Happy Halloween from these candy-craving 'lil scallywags!

 

 

Honeymoon album

Since this year we celebrated (and by celebrated, I mean went out to dinner 3 weeks after the fact and called it good... Matt did send me beautiful flowers on our actual anniversary, it wasn't forgotten) our 10th wedding anniversary.  I really wished we could have celebrated in Hawaii, but since that was just a dream I decided to finally print photos from our honeymoon cruise and put them in an album!

I decided to do this Project Life style using one of the PL mini albums.  However, I didn't use any of the PL core kits, I instead purchased a Hawaiian themed digi scrap kit and made my own PL style journaling and filler cards using Photoshop.  I really had fun doing this and putting the album together.  Enjoy!

 

Photos: 2012. Week 40. Sept 30-Oct 6

Sept 30

Sunday evening my sister, Becka, gave birth (just 6 minutes after entering the hospital...) to aa beautiful baby boy.  Ender Robert Cragun.  We were able to Facetime a bit :)

 

Oct 1

IT IS TIME!  Potty training bootcamp started Monday morning!  We took a modified "3 day" approach.  I'm pretty sure we went through at least 20 pairs of underwear on the first day.  Here, Jonas is trying to figure out what the underwear is all about.  They are definitely cool, because they have Woody on them...

 

Oct 2

We were sans pants all week, so mommy wouldn't completely loose it under ALL the laundry.  I must admit that potty training is the HARDEST THING EVER!  Especially 2 at once...  ALL my attention had to be focused on these 2 rascals.  In this photo the boys were droping monster trucks down the railings.

 

Elliott and his underwear...  And now he prefers his apples whole...

 

Oh my!  This photo is too funny not to include...  Jonas wanted to check out where his potty was going.

 

Oct 3

The boys have a new favorite snack!  Popcorn!  Jonas LOVES helping and watching it pop.  Our little stir crazy popper is so much more fun to watch than microwave popcorn (plus it tastes yummier too).

 

By the end of thes potty training days, wrestling and tickling is all anyone wants to do.  Mommy is exhausted!

 

Oct 4

Potty training is wiping everybody out.  Unfortunately, (for everyone...) mommy is only allowing 1 hour nap.  Jonas fell right to sleep and Elliott fell asleep in the rocker.

 

Thursday, after (short) naps, we ran to the county building to turn in our voter registration (yikes!  last minute!).  This is the flag at the county building with storm clouds coming behind it.

 

Oct 5

Thursday's storm clouds brought the first snow of the season.  The boys watched the falling snow excitedly from the kitchen window.  They still need some new winter attire.

 

Oct 6

These boys definitely LOVE bathtime.  They now have a thing for hanging out on their tummies the whole time.  There is barely any room for both of them on their tummies.

 

This week in an INSTAGRAM:

Sunday snuggles with Elliott.

 

First snow.

 

I found Woody and Buzz on the floor like this Saturday morning...  Friends til the end!

Photos: 2012. Week 39. Sept 23-29

Sept 23

Aren't these beautiful?!  My little adventure of home-made croissants was a total success!  I'll definitely be making these again.

 

Who doesn't enjoy a little game of peek-a-boo in mom & dad's bed right before bedtime?  I LOVE these two crazy boys!

 

Sept 24

We have a new favorite movie in the house.  Wall-E anyone?

 

Elliott found a ladybug in the backyard.  His first reaction was to scream and try to smash it (he probably got that from me...  I do not like bugs AT ALL!).  But, Daddy showed him that laybugs were nice bug friends.

 

Sept 25

(iPhone pic)

Trying to find outfits for family photos is SO HARD!  I spent way too much time this week putting together different outfits and texting Tara for advise.  This is my current plan...

 

Sept 26

Jonas & Elliott are getting more and more interested in what goes on in our garage.  This week, Matt changed my breaks and the boys sat there in the doorway watching him the whole time!

 

Sept 27

Fall is definitely HERE!  Gorgeous!  I hope some of these leaves stay for our family photos in a couple weeks!

 

Sept 28

I love that we live so close to the grocery store.  We can take a walk there when we just need a few items.  Yep, it was a pj walk to the store kind of day.  Got to enjoy these stroller walks because I think the boys will soon be done with the stroller altogether...  Sad!

 

Sept 29

The boys finally learned how to "pound-it"!  I've been trying to teach them since they were teeny tiny, but they finally got it!  Here, Jonas is practicing with daddy.

 

This week in an INSTAGRAM:

Lunch at Costco.  J & E make the perfect pair.  Elliott only eats the hotdog and Jonas only eats the bun...

Photos: 2012. Week 38. Sept 16-22

Sept 16

Oh!  My heart!  I think this is my most favorite photo ever!  Sunday's race was over early enough for Daddy to spend a little time playing with the boys in the backyard.

 

Sept 17

Elliott found my cowboy boots in my closet and insisted on wearing them around all day.  Even down the stairs...  Quite humorous to witness.  The boots kept falling off between steps and he had to adjust them between each step.  I'm surprised that he made it down the stairs without hurting himself.

 

Laundry, the never ending chore...  I don't mind washing it or even folding it, but I detest having to put it all away.

 

Sept 18

A "chill" moment with Jonas.  He loves the new I-Spy bag from Swiss Days.  The baby is his favorite thing to find.

 

Sept 19

After watching "Forks over Knives", Matt is on another health kick (these happen several times a year).  This week he decided to try "Rip's Big Bowl".  It's a concoction full of various fruits and different cereals and flaxseed and walnuts, drenched in almond milk. 

 

Sept 20

One of my very best friends!  The $1 large Diet Coke from McDonald's.  It is SO hard to resist you!

 

Sept 21

Jonas & Elliott LOVE TV.  A little too much, probably...  I'm loving their new TV watching stance though.  On their tummy with their feet crossed behind them.

 

Sept 22

I've been wanting to try my hand at home-made croissants for a long time and I finally mustered up the courage to try.  The dough was easy enough, but I was most concerned about the "butter square" and rolling and folding and chilling and rolling and folding again...

(I used the recipe on www.annies-eats.com)

 

This week in an INSTAGRAM:

Baking kick this week...  Mmmm... cookies!  (I tried a new recipe and replaced half the vanilla with almond extract, oh WOW!  YUM!  Try that next time people!!!).

 

My little croissants ready for the oven!

Photos: 2012. Week 37. Sept 9-15

Sept 9

Sunday in St. George.  We decided to drive by the Temple and when we got there we decided that we needed to walk around the grounds.  I snapped a few photos because Becka was saying that she's like a photo of this Temple to hang up in her house.  I printed this up in a 16x20 for her.

 

Sept 10

Monday morning me and the boys met up with Brooke & Connor at Timpanogos park.  It was fun to watch our boys play and catch up a bit.  It was also fun that we showed up with the same exact color on our toenails (true friends!).  Haha!

 

Sept 11

I was SO happy that we brought the motorcycle toys to Grandma's!  The boys LOVED riding down the (steep) driveway.  Yes, Elliott is sporting both sunglasses AND pajamas...  The boys both did a good job on slowing down and stopping on the driveway, they are quite skilled on the motorcycles.

 

Sept 12

Ah!  The Store!  (Yes, it is actually just called "The Store").  Great haven of fountain drinks and gourmet cookies.  Daily trips to The Store are a MUST when visiting Midway.

 

Sept 13

It was fun that we were in town for the Our Best Bites book signing event!  I hadn't seen Sara since college!  (We were roomies!).  I grabbed couple of their new cookbooks for holiday gifts.  Great job girls!

 

More bike/motorcycle riding at Grandmas Thursday afternoon.  Camille brought Truman and Bodie over to join the fun.  Jonas and Elliott fell in love with their sweet Schwinn tricycle. (Yes, Jonas does not have pants on in this photo (yes, he does have a diaper on though), sometimes you just don't feel like wearing pants...).

 

Sept 14

(iPhone pic)

Friday was spent driving home.  The aspens were absolutely stunning!  I wished we could have stopped and photographed them up close.  I LOVE aspens in the fall!!!

 

Sept 15

More scenery...  Saturday I photographed a wedding at Chautauqua Park in Boulder.  Gorgeous!  The Flat Irons are my mom's favorite mountains (she grew up in Boulder) so I snapped a few pics of the scenery for her.

 

This week in an INSTAGRAM:

Hotdogs Cragun style!  YES, please!  Delish!

 

Rub-a-dub-dub!  4 boys in the tub!  Truman, Elliott, Jonas, Bodie.  Mine are the ones NOT looking at the camera...

 

Time for a haircut at Salon Zazoo.

 

The results...

 

Elliott snoozing on the way home.