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, April 19, 2009

Didn't

I didn't think I would have the energy to blog tonight, but I find it hard to concentrate and enjoy on my shows this evening, as I watch Jake sleep in the hospital bed next to me.

Jake and I came to Fort Worth on Thursday for a check in appointment with Dr. Hernandez, as Jake's seizure activity had a tremendous increase this past week. He advised some therapies to get us through the evening and if things weren't any better to call in the morning and we would probably have to check in.

Friday morning came. I recruited my mom over early to be another set of eyes for me, as I have sadly become so accustomed to seizures, that I wasn't sure what was "better," worse" or "the same." She advised that 10 seizures in the 10 minutes she had been there ,probably was not normal and that I needed to call the doctor's office.

I called, and as expected we were asked to come to the er at Cook Children's and check in.
So I made arrangements for Addison , as Matt was still out of town, and Jake and I made the long wet, trip in the pouring rain.

We arrived in the crowded er and were instantly whisked away to a back room where we waited to get a room upstairs. The wait was actually quite pleasant, as the nurses and doctors showed amazing compassion and understanding for or situation. I certainly didn't expect that after seeing how busy the emergency room was upon our arrival.

We are still here and will probably be for a couple more nights.

I didn't expect myself to be able to leave Jake's side, however I asked Matt to stay the night last night so I could get a good nights rest and spend some time with Addison.

I didn't want to leave, but thought it would be the best choice for my kiddos.
Addison, Babi, Papa and I met for Italian food. I took Addi to an ice cream shop. We then planned to have a girls par-tee and bond a little, as I told her what an amazing big sister she is.

Well, we didn't make it past 9:00!
We didn't have to spend 10 minutes chasing Jake around the house to give him his meds.
I didn't have to make the trip a millions times down the dark hall to Jake's room to check if he was ok.
I didn't stay awake all night by the blue blur emitting from the video monitor, begging me to get a closer look at Jake.
I didn't have to break up fights over bed space in the middle of the night, as the twerps struggled over the ideal sleeping spot.

I didn't get up and out of bed before 8:45 this morning!! It has been since August, that I have slept past 6:30 am! I logged a full 12 hours of sleep last night and could not feel better.

Although, last night was amazing, I didn't know my heart would ache so much being away from Jaker-doodle and not being able to help him.

I didn't know how heart breaking all of this was to Addison, until she kneeled in bed, in the darkness of the room and begged God to make this stop happening to her brother. For him to quite "busting his chin," having seizures, and staying the night away from her.

I didn't know how much my arms longed to carry Jake to and from the restroom again.

I didn't comprehend how hard it would be to tell my baby girl goodbye once again and that I didn't know when I would be home.

Finally, I didn't realize and still can't fathom how many people are reading about us, praying for us, and helping us get through this bump in our road!

The power of prayer and awareness is truly amazing!

Be strong and courageous. Do not be afriad or terrified because of them, for the lord your God goes with you; he will never leave you or forsake you.
Deuteronomy 31:6

God Bless~ Christine

4 comments:

Brandy said...

Spoken like a mommy. We want to be away from the stress of our children sometimes, but the time away is a reminder how much we LOVE and cherish our children's desire to want and need us. It is fulfilling to know that they need us, and we are so happy to reciprocate. That is our job, born within us and we wouldn't trade it for the world. You are strong, courageous and wonderful, much like that sweet boy of yours. I am so glad you are under the microscope at CC and they can witness all that Jake goes through. Hang in there, and remember how many people are hoping and praying for Jake and your family. It truly is...All4Jake.

Anonymous said...

tears...just tears...but HOPE for an answer feels near in my heart! It will come, GOD answeres prayer! You are all so loved! love ya, Julie P.

Marcia Fisher said...

I just read the entire blog and the tears are flowing and don't seem to stop.

Christine you are so amazingly strong and your words are inspirational. I am glad you have support from your family and friends.

May the Lord send His sweetest of Angels to be with your family and Jake!
You are in our thoughts and prayers!

Anonymous said...

I can't give the words it will take to express what I am feeling or thinking. Just don't lose the faith - we are all thinking about you and your amazing family.