Sunday, December 15, 2013

Jonah update


A post I started December 15:
Jonah has been doing great! Since my last update on him he has had 2 longer seizures that he could still communicate with his eyes and also smile but not talk or anything. They were weird but each time he finally came out of them by himself. That was a while back now so hopefully we won't see any more of those. Other than that, he has only maybe one per day of a quick one second seizure always while sitting so he has not hurt himself since the start of the diet! Praise God. As I am making 2013 yearbooks it's hard to look back at some of those summer pictures with so many bruises. With that said I'm also glad we waited until we could get in down at the Mayo. (Update, today the 17th, he had 3 drops...bummer. They were all mild though)
 His ketones have been mostly large, tonight they were extra large. I think it does have some to do with how fast he eats his food. If he gets the whole ratio down quickly, he seems to have higher ketones. 

We made chocolate covered pretzels this past weekend with sprinkles and m&ms. At first I tried to hide making them from him. But, that didn't work so well so he ended up helping us make them! We told Jobah that they were for gifts and we couldn't eat them. He did great!! He helped dip, sprinkle, add m&ms and put them into the container once dry. He didn't even try to eat one!!  

One of the apps Jonah really enjoys is the Easy Bake oven app. You get to make, decorate and eat cookies and cakes. I think he enjoys playing with pretend food. He knows we have our food and he has his. He knows that his food is his medicine that it will help him not have bonkers. 

Update December 28:
Things have been okay for Jonah. He has been having more seizures lately. I would say an average of 4 per day. Similar to pre keto. 

Before he started keto his drops seem to be trigger related, meaning if he was very upset he would have a good chance of having a drop. Well, once he started keto the trigger related drops seem to diminish. Well, fast forward to now and it seems as though his trigger related drops are coming back. 

Also, he has been having this new kind of seizure that is new to him. It's wired, during this new seizure he is aware of what's going on I'm pretty sure because his eyes can track you, he can smile and he usually will put his hand up to indicate to us he is having one. But if you didn't know what to look for you might not when know their was activity going on. Most of those are short but a couple have been long. It seems if I tickle him or something he will often break out of it.

There's so many variables on what could be causing these new seizures. One being he has gained a couple of pounds and maybe he needs his Keprra increased.  He's on a pretty low dose. 

I've been told that there's a lot of tweeking the diet. We really haven't done any tweeking yet. We go back down to the Mayo on January 6-7. Jonah will have an overnight EEG followed by a visit with his Nero and dietitian. 

Barb and Jim are still making all of his meals, so that is awesome!
Jonah is still producing large ketones on a 1.5:1 ratio which is great!
Actually, I have started recording things on a chart that has increments of one half hour so I can see any trends or red flags and today so far (it's 10:30pm) he has only had maybe one! Tonight his ketones have been extra large so maybe that has something to do with it, I don't know.

Friday, December 6, 2013

recap of the last 3 months in pictures

A big reason why I started this blog back in 2009 was to record some sort of diary or scrapbook you might say of our family.  The last 5 years have been filled with so many highs and lows; from losing my vision to family vacations to additions of our family to Jonah having seizures......
With that being said, the focus here for the time being is to update friends and family on Jonah, I don't want to leave out my other 5 treasures.  Enjoy these pictures of our family of 8 over the last 3 months:


video

Thursday, November 28, 2013

First haircut :) :) :(

Justin took Ethan in last night for his first haircut. :) & :( My baby is turning into a little boy. 
Before:
After:

Wednesday, November 27, 2013

Please don't think we are asking for donations but some people have asked what we might still be in need of for Jonah. Here is an updated list:

A couple more small spatulas
  
 A second small cooler/lunch type insulated bags for traveling with meals: The one we have is a called a Pack It. It is very cool but any brand/kind will do.

Urine Ketone Strips: (available at pharmacy):  Walmart sells them at half the cost of Target

Toothpaste: I need to check which brand. http://www.eco-dent.com/special-care.php Flavors: Original Mint, Cinnamon or Lemon Lime

Medication/supplements:  Money to put towards his medications and supplements.

Special foods: Gift card to a grocery store.

O Clear Water: Sold for sure at Byerly's, not sure where else. Any flavor.

Bicford flavorings: Small bottles are fine. https://www.bickfordflavors.com/  They are familiar with keto diets if you call.  Otherwise, flavorings can be ordered on their website.

Kids Foaming Hand Sanitizer Alcohol free  Smart & Silky

Extra expense cost in driving to the Mayo  His next appointment is early January.

More small glass containers with lids. We have found that some of our containers are already getting small cracks in them. 

Colored straws: We go through a lot of those. :)

Crafts, stickers or other small things: We are trying to get creative this Christmas and do more crafts or other things instead of baking cookies and what not that is food related. 

Again, these things are just an idea of things we could use for those who are already asking. 

Thanks in advance.

Jonah continues to be doing great on the diet.  We really won't know a whole lot about his seizure control until early January when we go back in for another 24 hour EEG.  It seems like he is having less seizures than before he started the diet but I really don't know being at the hospital they said he was having 3-6 an hour of which we had no clue.  




Jonah's three favorite faces!!









Monday, November 18, 2013

Quick update

Jonah continues to produce large ketones on the 1.5:1 ratio. I'm so thankful for that. The higher the ratio the more creative you really have to be to get in all of that fat. 

If he is upset or maybe really tired he will still have a drop seizure or maybe an eye flutter. Overall, I feel relaxed  about him running around outside, at the store or at church without a helmet on. Before the diet he would pretty much wear his helmet anytime we would go out of the house. It was quite the chore to get him to wear it all of the time. We never knew when he would drop to the ground. 

I'm going to talk to his dietitian tomorrow to see what the next step to move towards complete seizure freedom is. 

Here's James and Jonah with his helmet:
And here's now:


I love to see his face with NO bruises. 


Monday, November 11, 2013

2 week update

I'm sorry to all of you who have been waiting for an update on Jonah. I have been so tired at night that I haven't been up to writing a post. 

Jonah is doing great with his new diet! He eats it wonderfully. Things he never used to eat like macadamia nuts he even enjoys enjoys and asks for now. Macadamia nuts are on his free foods list. He is allowed one free food each day if he is really hungry. So if he gets really hungry we are allowed to give him 1 macadamia nut, 3 black olives, 25 grams of lettuce or 3 filbert nuts. 

It has been a huge gift from God that Barb and Jim have taken on the huge task of preparing Jonah's meals. It really is not an easy task. It can take hours to make a few days worth of food. The fine tuning process like how much raw ground beef will it take to make one small  hamburger patty that needs to weigh 27 grams. 

We are really thankful to all who have stepped in and blessed us as we try to heal Jonah's brain. Thank you to all of you who continue to lift Jonah and our family up in prayer, we feel it. Thank you to my mom who has been coming over EVERY weekday to help out. Thank you to everyone that has donated supplies. We are using every single one, from the pack it to the small containers to the tiny spatulas. Thank you for the meals you had given the rest of our family as we are still trying to figure out how to feed Jonah his "magic" food and then also provide a decent meal for the rest of the kids at the same time. Thank you for monitary gifts for the medical bills that are pilling up faster than we can pay them. We are turley blessed. 

So, the question of the night you guys are probably wanting I know is....

1. Has the diet helped? In short, yes, I think so. Usually if he has a seizure now it is usually trigger provoked. For instance, if he is very upset and crying. I am comfortable with him not wearing his helmet. 
2. Is Jonah still having seizures? Yes, but I would say less. The only way to know for sure would be another EEG. At the hospital they said he was having 3-6 an hour, which of those we would only see maybe 2-3 per day. Today he didn't have any! 
3. Is he producing ketones like he should? The first 2 weeks have really been all over the place. One time I will get a negative reading and the next small and the next moderate. So it has really been changing a lot. His dietition has already increased his ratio from a 1:1 to 1.5:1. Today though he had very large ketones all day. He haven't had that high of ketones since we left the hospital. So that is great, hopefully they will stay up so we don't have to increase the ratio again. Every time we have to increase the ratio he gets less carbs( fruits/ veggies) and more fats. 
4. Does he get hungry with limited calories? Yes, we are working on that. It is really hard when he is crying because he's hungry and it's not time for the next meal yet. 

Jonah eating his veggies at grandmas
His tiny hamburger
This is his favorite meal. He asks for eggs everyday. Bacon 5g, egg 30g, cheese 5g, butter 10g, fruit 80g, veggie 80g, cream 55g




Tuesday, October 29, 2013

Diagnosis

MAE or Doose Syndrome. That is the definite diagnosis given to Jonah. We had always thought that since his second opinion, but wanted a definite diagnosis from an expert in epilepsy/Doose syndrome/ketogentic diet. So, after researching doctors, we came across ours. Here she is:

http://m.youtube.com/watch?v=j828eDvAPuY

http://m.youtube.com/watch?v=cdBqYbmxt3o

After the 24hour EEG at the beginning of the ketogentic initiation we were told. 

Monday, October 28, 2013

Update

The point of this diet is to produce ketones. His ketones were high in the hospital and so they lowered the ratio from 2:1 to 1:1. That was 4 days ago. His ketones have still been in the moderate range which is good. That is until this morning. When I checked he was at a trace to small for ketones. Throughout the day and this evening he has been at about the same.

I don't know yet if the dietitian will need to increase the ratio right away or wait and see if it changes. It's really nice being on the lower ratio but we will do whatever. 

Also, I will be talking to his dietitian tomorrow because Jonah is very hungry. I knew he would be hungry but I don't think he needs to be this hungry. He asks for food all the time. He cries for food. He asks for food that he never even used to like. For example, he used to spit out macadamia nuts. Well, on this diet he is allowed one free nut, yes only one. Anyway, when I gave him one he suddenly likes them and cried because I wouldn't give him 2 or 3. I hate it. I hate not being able to give him food when he wants it. It is so hard to watch your child cry because he's hungry and not be able to do anything about it. Hopefully tomorrow we will be able to raise his calories. Worse than that though is to see him have seizures like a tonic clonic (grand mal) or to watch him just fall over out of nowhere and hurt himself. His doctor said herself, this is the BEST treatment for what he has.

This is a change for all of us. We have a lock on the fridge and freezer now. The kids know they can't eat food in front of him. He just doesn't get it. Yesterday he saw Subway on the table and started looking around crying and asking where his was. He jut doesn't get it. He's only 3. 

Sunday morning in his sleep at 6:15AM he had a tonic clonic seizure. A short one but still it has been over 2 months since he's had one of those.

I will end on a good note, he had ZERO drops or any noticeable seizures today!! 

Please keep Jonah and our family in your prayers. We could really use them.

Thanks.

Friday, October 25, 2013

Going home

I'm exhausted tonight. Today has been filled with a lot of highs and lows...

Highs:
*Coming home. Seeing the other kids!
*Jonah ate all of his breakfast, dinner and snack.
*The new incentive donut jar is working great.
*Jonah put enough "donuts" in the reward jar to go on a tractor ride with dad.  

Lows:
*Throwing up his lunch from the mayo.
*Having a couple drops
*Sneaking orange juice a Huge set back. Only a tablespoon can take him out of ketosis. 




 

Thursday, October 24, 2013

Day #3 of the diet introduction

Today started out pretty good. He ate all of his breakfast.

 We tried to get him to swallow one if his pills vs crushing it and mixing it in a syringe with soda. That didn't go do well. After almost an hour of trying to convince him to swallow it, yet another meal had already come. So, we crushed the pill and put it in the syringe. Bottom line is that made him throw up. 

The his doctor came in and we ended up getting rid of one snack and lowering his ratio to 1:1 because we know he is really good at producing ketones. Good news! 

He ate okay at lunch. He had all of his ham and crackers but not what he really need to, the fat part of it. 

Between lunch and dinner jonah was GREAT! He was a really active happy playful little normal 3 year old.

For dinner he did great, ate everything thanks to the awesome kids coach or whatever you call them team! They set him up with a new reward system that he gets to put a donut in the bucket every time he takes a bite and then when it folks to a cartoon checkpoint, he gets a reward. It took a good half hour, but praise God he ate his food!

Cream is one of the hardest parts to give him. I'm hoping that with the outpatient dietitian we can move away from the cream some. 

We get to go home tomorrow! We are thrilled yet a little nervous. It's going to be really hard until we all get into a routine and what not. 

KB's







Wednesday, October 23, 2013

Day #2

Eating is not going go great for Jonah. Breakfast and snack both ended in him having a fit and what seems like seizure activity(not a full blown tonic clonic but still..). Lunch wasn't much better, he are about 50% but still was not enough. This is a sample of a dinner:
Thank you so much to all if you who have stepped up to help us yet once again. Someday, I hope to pay you all back. 

He was able to get the leads and cap off him from the 24 hour EEG. We did get the results back from that right away but that is going to have to be a post of its own. I'm very tired. 

Praises that Jonah was able to run around without being connected to a bunch of wires. They have 2 great children's play areas. Today they had a fall party that Jonah was able to go to. At the party he got to paint a pumpkin, go gourd bowling, fishing for prizes plus more. 
Also, I'm so thankful that Jonah are his entire snack tonight of cream and a bite of apple sauce! Oh and he seems to be great at making ketones so that is another positive. So far we are able to stay at a 2:1 ratio with the diet. That is really good news. 

Good night,
KB's

Day #1

Well... It's been a long day. They are great here at the Mayo. Very friendly and accommodating. 

The day started out not so great with the fitting of the EEG cap. He did pretty good with that. After we were settled back in our room he was not happy. He wanted to go out if the room, get the hat off his head, it took a lot to get him to eat his first keto meal. He was sad and cried a few times. Also, he has had a lot more seizure activity because he's in an environment that he his not liking. 

The second half of the day went a bit more smoothly. He ended up falling asleep. After his nap he was pretty happy and ate his snack great! I am so surprised how small the portions are and how much butter I had to spread on 3 crackers. 

Thanks everyone for your support!






Monday, October 21, 2013

Here we go...Jonah is to be admitted on Tuesday, October 22nd, 2013 and our lives will be forever changed once again, Ketogenic Prescribed Diet





So here is the deal for those of you who don't know what this whole thing is about.

Jonah will be starting the Pediatric Neurologist prescribed diet which is called the Ketogenic Diet on Tuesday. (You can find out more on the diet here.)  There is a wealth of info on the web about this diet and we are very happy and nervous to start this potential game changer for Jonah.

The doctors up until this point have attempted to give us an idea that our Jonah will more than likely need to be on medication for his entire life due to the type of Epilepsy he has. (MAE as it is commonly referred to, or Doose Syndrome)  We have been looking all over the place for a doctor that would be able to first exhaust the resources available to her/him with finding out as much as we can find out about what Jonah has and what he does NOT have and then continue on with a potential cure for his condition.  That is where this gets tricky, most doctors have come to the point that once a child has started to have multiple seizure types such as our Jonah they are convinced that the best course of action is heavily medicate them, which obviously will alter their quality of life.  That is why I started to do my own research into what all of the options are, and I mean all of the options.  Surgery, prescribed diet, multiple medications, praying, overall diet changes, and doing nothing were really what I came up with.  So I was intrigued by this doctor out of the Mayo in Rochester that was really on my train of thought when it comes to treating root cause and potentially curing the seizures all together.

That is when after visiting our second opinion doctor out of the St. Paul area we were pressed to come up with someone that might be able to assist us with putting our best foot forward while attempting to give Jonah the best chance at beating this thing.

So it comes down to this: medicate him with more pharmaceutical drugs and hope that they will work, and more than likely continue to treat symptoms of the seizures and deal with the many side effects that they bring, or to go straight to the point where most families that are in our situation find themselves inevitably anyway after attempting to treat their child with medication over the course of years with failed results, only potentially giving the condition time to destroy pathways in the brain that might have otherwise have been spared if the diet had been started sooner.  So for us we are thinking of it this way, it is better to start off with the diet as even if it doesn't work at least we will know that and at least we attempted to go the path that could have resulted in Jonah being seizure and medication free after the diet has run its course.  So the chance of Jonah being seizure and medication free is the best option for him right now and the only known method for that to happen is this Ketogenic Diet and it can only be administered via a Dietitian Team and a supporting Pediatric Neurologist, to which we have found both to be very responsive to our overall plan so far.

We are not a neurologist and don't attempt to understand all of the stuff going on, however we are Jonah's parents, and we think if we get him off medication and on the diet and he is able to be seizure free for 1.5 to 2 years his brain is a powerful thing and hopefully will be able to heal itself along with God of course having his hand in all of this Jonah might be able to look back at this time and thank us for trusting God.

I want to thank the Irvine family for sharing their story as that is what lead us to Dr. Wirrell.  (Please take a minute to read about them here.)  Their story was so similar to ours we couldn't ignore it, and bring it into our options list.

Below you will find out some stuff that the doctors and the dietician team have come up with that we will more than likely need over the course of this at least 3 to 4 month trail that will hopefully turn into his long term treatment.

The cost on the right is only my guess, the reason I am putting this list out here is I know that many have asked how exactly they can help, well this is really a tangible way that folks can help with what we are going through, not everyone wants to or can watch our children as a way to assist.  (Not minimizing folks that have watched our kids, cause that is awesome)

Scale for weighing food (must be gram scale with 1/10 accuracy): $40
Small plastic storage containers for small amounts of food: $20-$30
Screw-top plastic beverage bottles for liquids: $
Small rubber spacela's to scrape every morsel of food: $
Measuring Cup/s marked with milimeters (small) $
Bendable Plastic Straws: $
Small oven safe dishes for microwaving: $
Small cooler/Lunch type insulated bags for traveling with meals: $
Tooth picks for eating small pieces of food: $
Blender: -Item already
Milk Shake Wand or Small hand beater to whip cream: $
Tape for making labels on food containers: $
Small Skillet (Stainless Steel)
Bathroom Digital Scale for weighing your child: $
Urine Ketone Strips (available at pharmacy): $
SnoCone Maker: $
Coconut Oil: $
Toothpaste (Tom's of Maine): $4/$5
Fuel Costs to the Mayo over the course of this: $50 per trip, we'll probably need to visit every couple months 
Medication/supplements:$
Special foods: gift card to grocery store
Small toys or books that can be given to Jonah for incentives when he eats his whole meals- dollar store, goodwill, recycled toys


Thank you for coming along side us in our journey to do everything we can do to help Jonah. 

We will be using this blog as a tool to keep you all informed about how things are going for Jonah. 

We want Jonah to stop having "drops" that can lead to this:



Sunday, October 13, 2013

Happy Birthday Tyler! 15 years old today...


It has proven to be a good day for Tyler.

Enter the Kittelson-Burke house at approximately 8:15 when Tyler decided to roll out of bed and shower and get ready for the day.  He proceeded to the front door of our house to put his shoes on when I stopped him and said, "Happy Birthday", to which he replied, thanks, I guess, then I said he might want to wait to put those shoes on...

I grabbed 2 boxes of shoes from my bedroom and brought them both out and instructed him to pick one, and the choice couldn't be based on price, I was hiding the price tag for each pair, he had to judge for himself without my influence which pair he liked best or didn't like for that matter and go with what he liked.  Tyler ended up choosing the lower cost shoes and all was right in the world, for just a second.

I then showed him the cost of both pairs and then offered him one last out, he could return both pairs and get a fraction of the cost of the lower priced pair, however he declined to take me up on that offer.

Then I grabbed some more stuff from my bedroom and he was happy to see me bring out some clothes.  2 pair of Urban Jeans; 2 t-shirts (1 Coca-Cola 1 Pepsi Cola), and finally a hoodie that I thought he might like, ZooYork.

Anyway I let him know that he needed to pick his favorite pair of jeans cause we needed to return the other pair, to which he quickly quipped that he would spring the $25 for the pair that I was planning on returning, and so his smooth and slick approach proved well for him.

We went to church (on-time), he didn't complain much and we each took part in communion and then we said our final good-bye's to a couple that we have known for a long time, Jesse and Andrea were honored on stage and were game enough to even stand as if they just married to hug and greet those that just wanted to wish them well.  I took the opportunity to do just that, now normally I don't do hugs, but this such occasion merited such an action, and action that carries with it a deeper meaning, especially coming from me, a hug from meaning that I wish them well, that I wish them continued focus on God and to be that pilliar to which they were to so many at Quarry including me.  And so I hugged each of them with baby Ethan in arm to let them know that they are simply going for now to be obiedent to God's calling, it isn't for me to understand but it is for me to also respect their obiedience.

Obedience is a peculiar notion when it comes to young men.  My Tyler is generally a good kid, and doesn't push the limits too much, but when he does he knows that he needs to rein it in and simply say that he is sorry, no matter how backhanded his sorry is, he does it and attempts to move on.  Tyler is an intelligent, strong willed, and thoughtful young man when he wants to be, he just doesn't want to be all the time I have found out.  There are many things he can do better than me at this point, I'll just name a few...

~Run faster than me
~Play Call of Duty better than me
~Play Halo better than me
~Write better than me
~Play Pokemon better than me

Before I go too far, I'll leave it at that, so far I am taller than him and I make more money than him, for now anyway.



It was many years ago that I found myself in a very different place starring down the idea that I was to be a dad!  I was 17 years old and had to really come to terms with a many great things.  I could go down a path talking about how my dad wasn't there and how he was an alcoholic, but all in all, I have a dad whom I believe cares about me, however he just doesn't know how to show it.  And so I am learning everyday how to be a better dad for my kids, not just for Tyler but for all of them.  To be able to just say those 3 words is something that has eluded my lips since Tyler was about 8 years old, and so today as I took him to lunch, just me and him sitting at Quizno's eating a meal together, I couldn't muster up the words and say them.  My intention is that I live out my love for my kids in everything I do.  I know there are many quotes about intentions, I commit to this, to say I love you to my kids and wife more.

While having 6 kids wasn't my idea, I sure am glad we did, I love each one of them so much.

I'll end this post with something that have been looking forward to...

To Tyler:

I wish you the best of luck.  I hopefully have given and will continue to give you a good example of what having a relationship with Jesus is like.  You are growing up so fast, don't take it faster than you need to while you are still young.  Wait to get a job, be a kid.  Wait to get a car, learn to use ours.  Wait on God for "the one", God will give you "the one" when you're ready.  Focus on school and do your best, that is all anyone can ever ask, that is what I am asking, just do your best.  You are a natural leader, lead well.  Remember what really matters, not the stuff you get, it's the relationships that you will look back on and say man I wish...  Take time to invest in others and to let others invest in you.  You don't always have to be "doing something", soon you too will be asking where has the time gone.  Enjoy your family.  We enjoy you.  I love you Tyler, I hope you've had a birthday to remember.

Dad.



Monday, October 7, 2013

Results

We have access to most of the results back from the Mayo.

 I haven't had a chance to go through everything but it seems like most of the results came back normal.  He does have a carnotine deficiency which he will need supplements for. You need carnotine to produce good ketones on the diet he will be starting later this month.

I've heard that carnotine supplements can cause an increase in seizures, please come along side us in praying that doesn't happen with Jonah.

He has some sort of lesion on his brain I guess. I don't think it is a big deal though because they didn't call us about it or anything. We read about it on his online charts.


Wednesday, October 2, 2013

Birthday Boy! (One Down, One to Go)

12 years old and STILL smiles for pictures. (I'm lucky)

Today, my second-born son, Shane, proudly accepted that he is now one, yes one year away from teen-hood.

His long-awaited big day turned out to be a blast!

In the midst of receiving numerous gifts, including a newly released hovering Air Hogs ATMOSPHERE, an ample supply of duck-tape, and tons of, yes you guessed it, birthday money.

I think it is safe to say that this happy-camper can drift off to sleep tonight assured that today has turned out to be a birthday that will remain unparalleled by any other for years to come.
 
We love you Shane, have a good one!

-Kristi




written and edited by, Tyler Kittelson-Burke

Monday, September 30, 2013

Happy Birthday Grandma

My mother is 60 today! She is a wonderful mother and grandmother. She always puts others first. A good example of that is tonight for her birthday celebration she choose to go to Chuck E Cheese. She knows how much the kids love it there. I couldn't ask for a better mom.
Here us the banner the KB kids made for her,

Tuesday, September 24, 2013

Jonah's back was hurting ALOT through Sunday. Praise God that he is feeling much better!

As far as his seizures, today he had around 5 drops. That is a high number compared to the last couple weeks. It seems like most days he has been having 1 or 2 per day. Hopefully the number won't keep creeping up.

We don't have any results yet form the Mayo. I will post when we get them. 
 

Thursday, September 19, 2013

Mayo Day #2

Today's appointment went about as good as expected. Jonah sure is a trooper!!  Halfway home his back started really hurting from the LP so we had to pull over on the highway so he could lie down for 20 minutes or so. We gave him tylonal at home and that seemes to help for the most part. Hopefully, he will feel better tomorrow.  

Wednesday, September 18, 2013

One month

Yesterday marks one month since Jonah has had a tonic clonic (grand mal) seizure. Praise God!!

He continues to have the other kinds pretty much daily but I feel as though overall they have become less frequent.

Thanks for coming along side us through this journey. 



Sunday, September 15, 2013

Mayo Update

We finally went down to the Mayo Clinic this past Friday. It seemed as though we were waiting a long time for that day to come around.

It was pretty much everything we expected and hoped it would be. I think it was worth the wait, at least so far. 

Our  journey started at about 6:30am for the 2 hour drive down. Jonah's first  appointment was an EEG which went very well. Thanks for all the prayers. We felt them. They did capture a lot of "activity" on the EEG, but as far as Jonah getting through the procedure he did great. 

We had some time between appointments, so we walked over the the mall for a bit and had lunch. 

After lunch and Barnes and Noble we headed back for the consult with the doctor we have been waiting to see for months. 

She seems to be a great doctor. She w as very nice. She took time with us to explain the EEG and what she thought could be going on. Also took the time to answer our questions. We didn't feel rushed or anything. She seemed to be very through in trying to find the correct diagnosis. She made phone calls to make things happen and to get the other tests he will need figured out so they would be all together. 

Jonah did have a couple drops while we were on the room talking to the doctor. She didn't even seem to be phased by them. She just keep on with the conversation. 

We mentioned the Ketogentic Diet as something we were interested in and she pretty much said lets try it. She didn't suggest any other meds or anything. She said something like if we were keen on the diet she thought that would be a good route to go. We will know within a month or two if it is going to work or not.

We will be going back down there this Thursday for more testing. This will be a long day for Jonah. He will have and MRI, lumbar puncture and blood work all while under anesthesia. Please pray that the appointment will go as smoothly as the last one and that the lumbar puncture goes good without any complications. 

After Thursday's appointment the next time we will go down will be a 3-5 day hospital stay to start the diet and have a extended EEG. 

I'm so nervous and happy at the same time. 
Thank you so much to our extended family and small group that have been there with us every step of the way. From my mom spending more time helping out with the kids to our aunties letting us sleepover, washing clothes, bringing meals, praying for us to our cousins blessing Vanessa with play dates to our uncles and small group helping with our home renovation to our granny's for matching socks. Words just can't express how grateful we are for each and everyone of you. 



Sunday, September 1, 2013

Singing praises tonight

Today we are singing praises and counting our blessings. Jonah has had NO seizures today. I don't know what tomorrow hold for my little guy, but, I know that today he had a really good day! 

Actually, the last couple of days he has only has 2-3 per day. 





Tuesday, August 27, 2013

Ethan's surgery

Our baby had surgery today. He was under the knife for about 45 minutes. 

One of his testes hadn't descended into his scodum so he needed surgery to correct the problem. 

Anyways, surgery went about as good as it could have. Recovery Is going good also. Hopefully he will sleep through the night.:) 

Tomorrow might be a long day. 

Here's our cutie before the procedure,



Tuesday, August 6, 2013

Blessings


Two weeks ago, my family plus grandpa and grandma, went up to Brainerd for a mini vacation. 

We had so much fun!! We didn't have to worry about cooking, cleaning or anything besides relaxing and enjoying each other. 

During the 3 days and 2 nights we were there we went to the water park at least 5 times. The first night we stayed in a kids suite which was awesome! 

We couldn't have left Brainerd without a trip to Nissawa. I love that place! 
This was in the kids suite

This was at the Plaid Festival

Anyway....

As we were enjoying family time little did we know everything that was going back at our house. It was a HUGE surprise. We knew Jim and Barb were getting some people together to maybe paint and clean the garage but they did so much more. We came home to a truly transformed house. What a HUGE blessing. Thank you, thank you, thank you to all who helped!   

Here is a glimpse of what they did:
The new corner bench and table
Here are 4 of 8 lockers they put in. One for all 8 of us
Here are the other 4
Heres more organization of the garage
The new bike racks

It sounded like God really had his hand over this. How everything came together. From people showing up to the furniture fitting perfectly. We are blessed.









Wednesday, July 17, 2013

Ethan



I just can't believe my baby is one. His first year has gone by so fast. part of me is sad that the last 3.5 months that Jonah has been having seizures I haven't enjoyed or spent as much time with Ethan as I would have liked to.  Ethan comes along with me to chase around Jonah pretty much all day. I'm so thankful that he is a very easy, go with the flow, laid back little dude.  I think God gave me Ethan knowing I would need my little baby smiles and baby snuggles to help he get through these hard times. One snuggle from my baby takes my stress level down at least a couple notches. 

Ethan is starting to walk more and more on his own.  He knows that he can get around way faster crawling but once in awhile I will look over to see him taking a few steps all by himself.  He is also starting to communicate more with using gestures.  For example, he has started shaking and nodding his head for things he likes and doesn't like or want.  We haven't taught him as many signs as we have the others yet but he does know some like please and thank you.

HAPPY BIRTHDAY, ETHAN!!!