Quick Jonah Update

Since he has picked up a cold, Jonah has had 10-14 recorded seizures everyday. That's not including the sub clinical ones. Please join me in praying that these will stop after his cold goes away. Also join me in praying for wisdom for his doctor. That she will lead us in the right direction to stop Jonah's seizures. Please pray that his little 3 year old brain will just stop seizing.

* Update 2 days later......

His cold seems to be getting better, yesterday, he only had 3 recorded! I hope today he will the same or less. 

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.

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. 

 

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. 

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. 

Random thoughts

Families who homeschool should definitely read this magazine-
http://thehomeschoolmagazine.com/
It is really encouraging. They give lots of advice, tips and resources.  Now, they offer it digitally for FREE! It is worth downloading the app.  

Joanh had another tonic clonic seizure this morning. That is now 3 in 5 days. I just don't get it.  They were all pretty mild but still, I hate when he has those kind.  

I can't believe my Vanessa is riding the Doodle Bug.  It seems like just yesterday she was riding around her Power Wheels around the yard. Time goes by so fast, to fast.

Thank you to everyone who called us today, sent out emails, stopped over, and prayed for us today.  It was a hard morning.  I am just so thankful to have the support of all of you.

This is a short one, but, I just want to share what a good day Jonah had. He had ZERO drops today while I was with him. He was at my moms for a couple hours and he had only one at her house. Then, we went to an access picnic at a park and he had zero there also.  Praise God, praise God, praise God!! 

Happy 3rd birthday, Jonah

This was a very special birthday for Jonah. Next year be may not get to enjoy cake and sweets like he did this year. With the kind of seizures he has, one of the most effective forms of treatment is a diet. The ketogentic diet. It is a high fat low carb diet. You basically train your body to make energy out of fat I stead of carbohydrates. So, we wanted to make this birthday very special. 

To celebrate we had a family gathering at grandma's house with family. Thank you all who came out to help bless Jonah today. 

He had a very fun day. Raspberries in bed with dad to start the day, a doodle bug ride down to the park, water and bubble fun with his new toys, going over to grandma's to hang out with family, eating cake, opening a few more presents, plus more. 

It seemes like he was just my little skinny thumb sucking baby and now he's already 3. Enjoy your kids when they are still kids. It goes so fast. You will miss it. You won't be able to turn back time and relive it or change the past. So, make each and everyday count. Before you know it they will be gone, out on their own. They will have their own families.

To my Sweet Jonah, I love you so much. More than you will ever know. My prayer for you tonight and every night is for God to heal you from your seizures, completely heal you.