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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Sunday, January 11, 2009

Simply stated

I feel I need to blog at least a little something , as I have been getting the feared emails and calls "Blog B---!"

I am not sure I have the energy, the spirit, the confidence, or maybe not enough wine tonight.

I still can't fully wrap my head around the turn our life has taken. I am fine with this detour, however I really thought would would be redirected onto the main road by now.

Addison says it best, and it certainly pains my heart for her to carry such a burden. However at every chance she gets, ie. shooting star, first star in the night, letting a balloon fly upwards for a never ending journey, and upon every daffodil, she wishes, simply:

"please let Jake's seizures go away."

She does not wish for herself. For a new barbie, or brand new puppy, but only for the health of her brother.

Addison too, has become afraid of "the phone call." As she stayed at my parents this past night, I called several times to check on her and her return and she was heard in the background almost every time, asking "if Jake was ok?"

This 5 year old dear child of mine, has more spirit, more bravery, and more compassion than I could ever have imagined. I, again, would love to have an ounce of what she has!

She states, ever so simply what we all dream of for Jake.....seizures go away....

~ Children are remarkable for their intelligence and ardor, for their curiosity, their intolerance of shams, the clarity and ruthlessness of their vision. ~

God Bless~ Christine

5 comments:

lisa a said...

oh~ starting the morning with tears...I was so impressed with her wishes in December. You have very special children!

Brandy said...

Lisa, said it best...starting the morning with tears. You do have special children and they get it from you and Matt!! I wish so badly that everything would go away. I hate to see you guys hurting. I love you and pray for you all so often.

Julie said...

Ditto!!!!!

Leslie said...

Tough weekend? What a precious angel Addi is and Jake too! You DO have the courage and strength that Addi does, otherwise you would not have made it this far! Love you!

Jennie said...

We could all learn lessons from our children. They seem to be the wisest and strongest through times of sorry and pain. My 9 year old told me "Uncle Jesse isn't in heaven,". I quickly replied. "Yes his is!, why where do you think he is?" "He is right here mom." as he matter of factly pointed to his heart.
Praying for you. Love you bunches.