Oh boy, oh boy!

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!

Day in the life | February 24, 2014

I must say, that life is a bit different from the last time I did "a day in the life"...  Here's my post from April 30, 2013.  This time around I used only my iPhone and it features only me and Jonas at the Children's Hospital.

6:27 am

The beginning.

 

7:31 am

A little too familiar...

 

7:58 am

No more liquid meds.  All pills, poor 4-year-old boy.

 

8:10 am

Guardian.

 

8:17 am

Our view this time around (through a really dirty window).

 

9:38 am

IV time.  He's so good at this.  No tears.

 

10:19 am

Asleep while we wait.

 

11:01 am

Not confined to our room this go round, so we got to check out the playroom.

 

11:28 am

Keto training for me.  Prepping Jonas' meals for tomorrow.  (Heavy cream, cheese, hotdogs, butter, applesauce, peanut butter, olive oil).

 

12:14 pm

Jonas is done fasting, but he doesn't get food yet.  Today he only gets this KetoCal drink.

 

12:25 pm

Hanging out, trying to get the boy to drink the KetoCal.

 

2:14 pm

This is how well the KetoCal is going down.

 

3:14 pm

Yes, I always bring bribes, I mean treats for the nurses.  Gotta make sure we are the favorite patients.

 

5:08 pm

Mommy food.  I ate this salad in record time!

 

5:48 pm

New reading material.

 

8:55 pm

Snuggles.

 

9:25 pm

Bettime routine with the hospital sink (I really do hate pedistal sinks...).

 

10:13 pm

My digs.  Yes, I brought my own blankets. Nite, nite.

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!

500

Happy 500!

This is my 500th post on this blog!  I've posted about many topics here on this lil blog of mine; different jobs I've had, moving across the country, moving across the country again, infertility, IVF, TWINS, cake decorating, NASCAR, family, photography, food, epilepsy, airports, shopping and the list goes on and on...  I started this blog in 2007 and I've had quite the life journey in these past 7 years.  Where will life lead me over the next 500 posts?  We shall see!

Go eat a piece of chocolate or grab a Diet Coke and celebrate 500 with me!  I'm going to go and enjoy the last couple pieces of Christmas toffee hanging out in the fridge and pretend for a minute that my boys would let me take a nap.  :)

Big news!

I'm SO excited to share with you all that I made the Project Life Creative Team 2014!  I'm very honored to be a part of this amazing group of ladies.  (I'm still pinching myself.  Me!?!  They picked lil old ME?!).  I'm excited to share with you throughout the upcoming year!  Welcome to my piece of cyber space.

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.

 

Potty update.

So, I bought the potty seats and the boys have overcome their fear of sitting on the toilet (thank goodness!).

I decided to start out easy...  The boys go potty at bedtime.  Right before pj's go on, or right before the bath if it's a bath night.  They get undressed and take turns going peepee (no poop yet, we'll get the pee down first).  They'll go a little and need cheers and applause before going some more.  This will repeat a few times and then it'll be the others' turn.  I love that they both clap and cheer each other on.

After a couple weeks of this routine I thought maybe we should make an outing of it and go buy some underwear.  I helped the boys pick of some underwear at Target and talked it way up for them...

They were excited to get something new, but I'm afraid that they were a little confused about their use.  They were excited about new Lightning McQueen and Toy Story "stuff".

Later, (after naps) (and after I washed the undies) I wanted the boys to try them on...

 They both didn't really like the new under garments and wanted them off.  Being the "mean" mom that I am, I made them wear them for a little while. 

Jonas kept pulling them down around his ankles and enjoyed strutting around the house that way.  (He'll probably kill me for taking this photo someday, it'll be a good one to show his future girlfriends).

After a little bit the boys were content to wear them (barely) and had some fun jumping on the couch (mostly) naked.

(for some reason this photo reminds me of Tom Cruise in Risky Business...  haha!)

During this time, Elliott wet 2 pairs of undies and Jonas 1.  They totally don't quite "get" the underwear and knowing when they have to go potty, so we'll put the undies aside and stick with our bedtime potty routine for now.  I think we'll re-visit the underwear in the Fall.

They know what to do on the potty, just not the don't-go-potty-in-your-pants idea...  We'll work on that.  Here's a couple of closing photos for you... 

Potty time!

It's Potty Time!

Yikes!?  Really?!?!?!

I just bought a potty seat for the boys (they were on sale at Babies R Us recently).  We aren't full on hard core potty training yet, we are just warming up to the potty.  Up til not the boys would freak out if I sat them on the potty, but this new seat is really helping.  We are working on going potty before bath and/or bedtime.  They have both gone pee-pee a few times, we'll work on poop later :)  So far so good.  I still think we need to get a little better about communicating before we go full on potty training.  Baby steps, I guess.

Stroller

I know this probably gets annoying, but I just have to give another (yes, another, sorry...) shout out to my stroller and the Baby Jogger company!

We have the Baby Jogger City Mini Double stroller and I absolutely LOVE it!  It is by far my favorite baby/toddler accessory!  We were blessed to have been given a couple of strollers when we found out we were having twins.  We started off with the double snap 'n' go stroller (given us by the lovely Woolley family).  It was the perfect way to start!  Being just a stroller frame it was lightweight and small.  But babies grow and another friend had twins so it was time to pass the snap 'n' go on.  Then, we used the Graco tandem double for a bit (thank you Jimenez family) and it worked for us, but it was big and heavy and after a few months I started considering a side-by-side.

Up to this point I had yet to spend any of my own money on a stroller, so I was trying to justify the purchase (which was hard because we had the Graco and it was in perfect condition...).  I did some serious research before deciding on the City Mini Double (I watched every single double stroller video on babygizmo.com more than once).  I was torn between the Bumbleride Indie Twin and the City Mini Double.  Both had advantages and disadvantages over the other, but in the end I chose the City Mini because it cost less (over $200 less, so big deal), it folded more compactly and it weighed less.  I couldn't be more happy with my choice!  And a huge thank you to the baby boutique, Shower Me With Love, I was able to get it 30% off!  Most of the bog box stores (Babies R Us, USA Baby, Buy Buy Baby...) have some nice 20% off coupons, but in the fine print at the bottom all "luxury" stroller brands are excluded, bummer, so again check out the boutique stores, they have coupons too without all the big corporate fine print :)

I love this stroller for so many reasons, but here are my highlights.  It is a dream to push!  Even with my 25, 27 lb boys I could push it with just one finger and I can maneuver it with one hand.  It is super easy to fold, just a little yank and it collapses flat.  It fits in my car perfectly.  I leave it in the car most of the time.  I can even get a huge Costco load in my car with the stroller in there too.  And it's as lightweight as they come for a double.

Unfortunately, lately we have been experiencing a little problem with the stroller.  One of it's front wheels kept locking in the "straight" position (you can either have the wheel swivel, or lock in the straight position) all the time.  The lock position is really annoying when at the grocery store or mall, or just walking to the park).  After a particularly frustrating Target shopping experience (not all the frustration was brought on by the stroller wheel...), I loaded the groceries and boys into the car and immediately (while parked in the Target parking lot) called Baby Jogger Customer service.  After zero wait time an actual person answered and I explained my problem.  It turns out that the stroller had a 1 year warranty, but unfortunately we've had the stroller about a year and a half.  Bummer, except that the fabulous customer service rep said that they would replace the wheel for me at no charge anyway!!  And, they would also send me a second on in case the other front wheel started acting up!  What an awesome company standing behind their products and helping out their customers!  I'm not sure how much it would have cost to replace the wheel, but I'm guessing it'd be around $50 or so!  I was already emotional that morning and I teared up a bit.  A few days later the new wheels showed up and we are back on track.

If you are on the market for a stroller seriously take a look at Baby Jogger!  Yes, it'll cost you a bit more than a Graco and it won't "match" your car seat (yes, it has a car seat adapter thingy), but you won't be sorry!  And look how cute it is in purple!!!

Sorry, I'm going to go on one more little soapbox here...  If you aren't planning on seriously running, like running, running do not get a "jogging" stroller!  I know it's like the "hip" thing to do, but they are SO bulky to get in and out of the car and heavy and awkward to fold and they really don't make good mall or grocery shopping companions.  Sorry...  just saying.  This particular model is not a "jogging" stroller (even though it's made by Baby Jogger brand...) and I'm not a runner, but I have taken my stroller on brisk walks and even a light jog and it performs wonderfully.  So for me, it's perfect!  Perhaps for you too :)

Name

Clair had this idea to "find" our last names in the New Orleans landscape...  Here's mine:

It was a fun project.  We spent about a half of a day wandering around the French Quarter looking for letters.  "Knox" (Clair's last name) was much easier.  The "N" was the hardest to find, but there were some amazing "O's" and "X's" all over the city.  My favorite is the Fluer de Lis for the "A" (it works right?).

Colorado

I never thought that living in Colorado, again (you all know that's where I was born and raised...  19 awesome years!) would ever be an option for my family.  First of all, my husband hates the snow and cold weather and more so, keeping us from my home state, would be that he has chosen a career in NASCAR, which is deeply rooted and headquartered in the South (pretty darn far from CO).  With all that working against us, a NASCAR job in DENVER, CO has landed in our laps.  Crazy!  I know!  We were in negotiations for quite a while and my stress levels of a possible move and major life change were sky high (fueling my lack of blog posts lately...sorry...).  Matt has now officially accepted this new position and given his current team his 2 weeks notice.  Matt will start his employment with Furniture Row Racing in January 2012.  He will be back and forth between CO and NC until we are all settled out there.  The plan is to pack and find a renter for our house in January and we are hoping to all be in Colorado in February.  We will be keeping our house here in NC, selling right now wouldn't be optimal and there is a chance that we could be back in North Carolina in the future sometime.

While I am sad to be leaving North Carolina (and Matt's parents, and lots of great friends... sad!), I am ecstatic to be moving "home".  None of my immediate family lives in CO anymore, but I have lots of extended family still there and many friends I will be excited to reconnect with.  We will be a 1 day car trip from my parents and my brothers and sisters (YAY!).  We will be back in Mountain Standard Timezone (yay for 10 pm news!) and close to great skiing.  We are all excited for this new adventure and looking forward to living in Denver.

p.s.  If any of you follow NASCAR you will now have to root for the #78 Furniture Row Racing car driven by Regan Smith.

Swahili

While in Utah, my brother-in-law, Chris asked if I was teaching the boys Swahili.  The answer is no, I am not teaching them to speak Swahili even if that's what it sounds like.  They don't speak English, but they do have this fascinating language between themselves.  It's so funny to watch them communicate with each other.  They both use their hands a lot when they talk too.

I'm interested in teaching them sign language so I've borrowed some Signing Time videos from a friend.  I'll let you know how it goes.

New look

I've know for a while that I was in need of spectacles...  I haven't worn glasses or contacts since I was 8 years old!  When I was a baby I had a couple different eye surgeries and needed the glasses to help heal from them.  When I was 8 the eye doc told me my vision was all good and I didn't need to wear them anymore.  That was the best day of my life, up to that point!  I remember being SO excited to ditch the dreadful things.  But over the past few years I could tell my eyes needed some help.  I finally took myself in for a check-up.  And, yep, I need help.  I tried on just about every pair of glasses they had in the place and my favorite frames were some super cute Coach ones and a fab Fendi pair.  Unfortunately, I have these 2 crazy, grabby almost 2 year olds, so $500 specs were completely out of the picture.  I found these babies at Costco and the price was definitely right.  Not too bad, eh?