J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


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Thursday, November 26, 2009

Happy Thanksgiving!

Happy Thanksgiving! We are so thankful to be where we are today in our new life with Doose Syndrome. Jake has come so far and we have been educated on so much the past year. Thank you to everyone who continues to keep us in your prayers. The power of prayer is truly amazing. Check out where we were with this darn Epilepsy stuff last November. and where we are now! I can't believe that he was able to walk on stage by himself. Sit on stage and I did not fret about him falling face first onto the floor! God Is good! Remember God's bounty in the year. String the pearls of His favor. Hide the dark parts, except so far as they are breaking out in light! Give this one day to thanks, to joy, to gratitude!” Henry Ward
video
video

Saturday, November 21, 2009

quick update

Matt took Jake to the Neurologist in Fort Worth on Wednesday. I had called a day before with questions and concerns and gave Matt a big list of things to ask.

Dr. Hernandez was more worried about Jake's nocturnal tc's , than apparently we had been. He scheduled an appointment for December 17th. If Jake is still having seizures at night we are to be admitted to the hospital. We had inquired about another IV steroid treatment , as it seemed to be our saving grace last April, when Jake was averaging 100-200 seizures a day. The child was having more seizures than he wasn't. We were admitted to the hospital for about 8 days and given the iv treatment. Since that day Jake emerged from the 9 month "walking coma" he had been in for so long.

The seizures lessened, the drooling let up, and the little man's personality returned to us! After a couple weeks we even were brave enough to take of the darned blue helmet!

So I am very torn about the thought of another iv treatment. I saw firsthand how this sort of treatment can help and am very anxious about how it may improve even his current condition. However, this will entail a 4-5 day hospital stay. Which will release us a day or two before Christmas. I am nervous for the side effects, the aggression, and the swollen appearance that comes with steroids.

I want him to be able to remember this Christmas as a very Merry one. Last years was riddled with knots on the head, stitches and seizures.

We do trust the Doctors at Cook's very much and know that they truly have the best interest of our little man at heart. So whatever decision they make, we believe it will be the best for our Jake.


"The first time you're broken, you don't know you'll be healed again, better than before."
Sharon Olds

Friday, November 13, 2009

Staples and seizures!

This has been a wild and crazy week! Jake got to bring home Mo, the class pet. It was great fun watching the kids interact with Mo. Jake even got to show what a great role model he could be. We ventured into Gap one afternoon. This sort of errand is usually nothing less than a MAJOR beating. Kids running, shoes flying, clothes falling....major beating to say the least! This particular afternoon, I gave Jake the job of showing Mo how to act. That had to have been the best Mommy -Idea I have ever had! Shopping was actually peaceful, as Mo and Jake sat by a wall and counted bananas, or whatever it is that monkeys and boys do together. I didn't actually care what they were doing, because I knew I didn't see them running or hear them yelling!

Mo went to the park with us,
and even got to take a trip to the ER.

Jake once again found himself with a laceration. He apparently go into a fight with a wall, while trying to wash his hands at school. However, this time it was not in the usual spot, the chin. Now it was the side of his head. So stitches wouldn't do the job, we had to call in the big guns...Staples! I think he is trying to make sure we are always on our toes!

Jake and Mo were troopers. neither of them shed one tear or even flinched as the staple gun pierced into his head. I can't say the same thing for me.:-)



;

Jake apparently loved the experience so much that he was most upset when I told him we were done and it was time to go. The twerp wanted to spend the night!

The good news?! I am assured that he fell, simply from the grace his mommy gave him and this was not a seizure!


The bad news? Jake has been having many seizures during the night, Or nocturnal tc's. They are not lon genough to even use rescue meds, but long enough and plentiful enough, that I once again drag him into our bed late at night, as to get a better nights rest. As opposed to running down to his room, when the monitor emits even the faintest of sounds.

Please pray that these seizures stay hidden at night and that this is not the sign of the damn beast trying to rob our house again.
Be content with what you have, for God has said, "Never
will I leave you; never will I forsake you." So say with
confidence, "The Lord is my helper; I will not be afraid."


- Hebrews 13:5,6

Sunday, November 8, 2009

a week late- oops


Geez, I notice the trend on all the blogs recently....I promise to get better about keeping up! I must do it. Life is just whizzing by and you're missing too many great things!

Lets go back a week and let me introduce you to Sir Jake and Lady Addison!


Halloween, as always, was an awesome adventure! The kids, and Matt and I, had a fabulous time!
So completely different from last year.
Last year we did have a great time, don't get me wrong, however circumstances were completely different.
Last year at this time Jake was having multiple seizures a day. He was drunk on drugs, and needless to say the anxiety level was quite high! Jake cruised the streets last Halloween in a stroller. When we allowed him to get out, one of us was right there either holding him, or close enough to him to catch him when he fell. We worried about drops, about crowds, about excitement, about strobe lights, and mostly about him getting over tired.

Although, there was a little anxiety this year, in regards to his stability. Halloween 2009 was much more relaxing than the year past.

We headed out quite early to a street a couple blocks away that is notorious for their extreme decor. The area is riddled with police officers controlling traffic and crowds, kids running to and fro, and ghosts and ghouls a plenty.

Jake was so enamored by the the look
of everything he wouldn't even carry his own treat bag. I overheard once even telling a candy giver, "No Thank You!"
The kid was so excited to be able to run without too many restrictions he could care less about the candy.

He slayed dragons.



and even fought Kings.

My heart fluttered as I watched him run, laugh, sing and play! My little man has come so far and I am so proud of him!

We had an awesome Halloween 2009!


Every day I look at something different around the house that "takes me back." Whether its the overflowing bowl in the cupboard with the numerous failed drugs that only made my son sicker, or the calendar noting the seizures and the timeline to wean on and off a new drug.

Many times it is his pull ups that he still loves to wear. I can't believe my 4 year old went back to diapers after not wearing them for so long.

The highchairs that kept him confined to his seat to eat so he wouldn't fall over and the baby monitor that sits on my bed side table, so I will be able to hear even the faintest sound.

Our little man has come so far! I am so proud of him! Many days I can't believe where we have been and I can only imagine where we will go. I can only pray that we Will never go back to where we were before!

"God moves in a mysterious way
His wonders to perform;
He plants his footsteps in the sea,
And rides upon the storm."


God Bless~ Christine