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, April 16, 2009

On bended knee, prayers are needed...

This is Brandy, Christine's friend, updating the blog as they are en route to Cook Children's in Fort Worth. They have an appointment with the neuro at 1:30pm. Jake is not doing as well as hoped. Although Christine's previous update (prior to the Century Club post)spoke of improved clarity and a decrease in seizures, they are back and with a vengeance. The past two mornings he has woken up with "tons of seizures and multiple TC's". To remind you a "TC" means TONIC CLONIC (Grand mal). Her little Jake falls unconscious, muscles tensed, and falls down on the spot. This is the Tonic Phase. Then his muscles will contract and relax rapidly, causing convulsions and his eyes roll back. That is the Clonic Phase. Imagine witnessing this and just counting the minutes on your watch to see how long it lasts. If I remember correctly, she has clocked one at 11 minutes before (maybe even 16). Can you imagine? Gut wrenching. After the convulsions cease, he will fall into a "Post-ictal sleep". He has had 3 of these, as of 9:30am this morning.

Please pray for strength, the doctor's knowledge, patience, courage to ask questions she may not want to know the answers to, a plan, a backup plan, Christine's extended family, Jake's caregivers, Addison, anything and everything that will help JAKE. Is it a diet, medicines, a mix of medicines, surgery? What? What is it going to take?

On top of all this, we also hear Matt has been in the ER in Houston with a major bug, vomitting and what have you. He is expected to come home tonight or tomorrow.

I will update as I get information. There is power in prayer and we know HE is listening. All 4 Jake.

3 comments:

Dana said...

Brandy:
Thank you for the updates! Hopefully the doctors can adjust the VNS to actually work for Jake and figure out what the few successful days were composed of that differed from the past 2. I cannot even imagine what they are all going through. I also cannot imagine going through it with my husband out of town, not to mention in the hospital himself! Like Julie said on the other post, let's hope this is the rock bottom and this doctor's appt. will be the beginning of the climb up!

Anonymous said...

Brandy, Thanks for keeping us updated. I will keep them in my prayers. I hope they can get answers. Susan

Fawn said...

Poor little Jake! Poor Christine! I'll be praying for them.