Chuck E Cheese

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Tonight, we celebrated Jonah's birthday at Chuck E Cheese. His actual birthday is not until Saturday, but, we will be having a family birthday for him that day. 

We all had a fun time at CCs as we always do. I love seeing Jonah so happy!! I'm so glad that the meds he is on have minimal side effects and that seizure distorter has not taken my little boy from me, the little boy that I know.  I pray that it never will. 

Praise God!!

Today Jonah only had 2 seizures!! That is the least he has had for a long time. Please keep praying!

Thanks

11 months

I can hardly believe my baby is 11 months already. His first year is going by so fast. Sometimes, I wish I would have more time to enjoy him as a baby. 

Some thins he is now doing:

Says "mama, dada, ball"

Waves

Claps

Likes to play "patty cake"

Starting to stand on his own

Is starting to take a step here and there

Loves food (not the baby food)

Goes crazy web he sees a freeze pop (of course cause he's had a taste from his siblings)

Only gets up maybe 2 times a night(instead of 4)

Has 4 teeth

Gives 5's

I sure love this boy!!!!!!!!!!!

Update June 17

Jonah had a pretty good day. I don't really know what to say sometimes when people ask how Jobah's doing. I usually say he is good, which is true but really he is still having drop seizures on average 10 times per day. 

A drop seizure is an atonic seizure that causes him to lose muscle tone for a second. Sometimes, it's just his head dropping and other times it's his whole body so he falls to the ground. Also, included in the 10 or so he might have an absent seizure for a second or two which is where he just zones out. Often a absent will turn into a drop. So, if we see an absent we go to him right away incase he will fall. 

Getting back to why I tell people when they ask how things are going...

Jonah is a very happy smart little boy. He is not missing out on anything right now. He loves to run around outside, ride his power wheel, ride his trikes, jump on the trampoline, color, paint, listen to stories and so much more. He just had these seizures that he could potentially get very hurt by. 

He is wearing a bike helmet when he goes outside or if we go to a store or somewhere. 

We have summited the paper work to try to get down to the Mayo do a third opinion. We'll see what happens.

Father's Day 2013

Jesus is my rock. Without Him, I don't know where I would be right now. On this Father's Day I want to thank my Father, my Heavenly Father. Thank you for so many blessings you have blessed me with.

 Thank you Jesus for my husband, I don't know where I be without him. Thank you Jesus for my 6 kids. Every single one of them. I love them so much, more than they'll ever know. Thank you, Jesus, for my parents and relatives. Also, with out them I would be lost. Thank you Jesus for healing my eyes and my body. Thank you that I can see. Thank you I can walk and talk and think and smell and taste. Help me not take any of those things for granite. 

Thank you for my house. To be living here in Monticello, MN USA is a blessing. Help me not to complain about how small it is or how the grass is mostly dirt or how the new neighbors put up a fence where the kids used to play kickball or the mess. Help me be thankful of the memories we are making in our home, even if it is small. 

Thank you, Father, for giving us Dr. Esponoisa. I know she came from You.

Thank you for my husband, Justin. He is an amazing man. With out him I would be lost. He takes care of me and our 6 children. He cooks dinner, he hangs out with each of our kids (tractor rides, bike rides, Pokemon, basketball, reading books, coloring, trips to the park....), he fixes our car, fixes our computer, keeps up our house ( new floors, broken outlets, flooding basement...), makes a milk run when we're out, goes to work every day to provide for us and so many more things.

Pray please pray for Jonah

Good morning.

Will you all come along side us and keep praying for Jonah. Also please pass on this prayer request to any if your pray circles. We need as many people praying as possible.

Just an hour ago, in his sleep, Jonah had another tonic-clonic aka grand mal seizure. Although it was mild it really shook us up. We thought those ones were completely controlled.

He has also still been having these small seizures which are called atonic where he will just lose muscle tone which will cause his head to drop and maybe fall over and absent seizures where he will just stare. Both of those only last a couple seconds and are usually within a few hours of waking up

We had a second opinion with another neurologist and he had another EEG which both went very bad. We were not happy with the second opinion. The neurologist where we had the second opinion thinks he has a rare epilepsy syndrome that does not have great chances of fully controlling his seizures. On top of that what he thinks he has can cause degeneration of cognitive skills. We think there is just not enough data to make that diagnosis right now.

We are currently setting up a time where when can get a third opinion at the Mayo clinic.

Please be on your knees for our little Jonah. He needs us right now.

Thank You

Kristi

We have a dr. appointment tomorrow with Jonah's neurologist. It's a follow up from his initial appointment.

Please pray for that appointment.

Praise God that Jonah has not had a major Tonic-Clonic aka Grand Mal seizure in 20 days!!!

He has been having these what seem to be mini seizures that will only last for a second or two within an hour of waking up. He has also started having them occasionally throughout the day. So, we have not let be on his own very much out if our sight. Justin and I are both very tired by the end if the day.

The meds that he is on seem to have little side effects. Once in awhile he says that his eyes hurt but I'm not sure far that's all about.

I'm a bit scared that his dr. will increase his meds again, change them or add an additional medication. But at the same time I don't want him to keep having these mini seizures.

I will try to update tomorrow after the appointment.