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,

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. 

 

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.  

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. 

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.