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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Monday, September 15, 2008

After a pretty uneventful weekend, Thank God, we woke up to a pretty active morning. every time I get comfortable and let my guard down, i feel as if that security gets ripped away.

A week from last Thursday we had a tc and had to give Jake the emergency medicine. This medicine usually knocks most kids out the rest of the day, especially at the dosage Jake is given. Not our Jake...he slept about 45 minutes and then was back to his usual tornado self. One nurse in one of the many hospital stays mentioned that shows his personality...he is a fighter! The next 2 days were pretty rough, we were averaging 20-30 seizures a day. These mostly consisting of "drops." Although these aren't as scary to watch as the tonic clonics (tc's, grand mal), these are probably more dangerous, as he falls and hits his head on our hard woods, the fireplace, a table etc...try to keep a kid who is used to runing through the house confined to the padding of the playroom! The next week we did get much better and were averaging only about 10-15 a day. This past weekend I only counted 3-4 a day!!

I think his little body is slowly adjusting to all the medication in it. He does not tremor quite as much as he used to. His drool and slurred speech have also seemed to improve considerably. I think we are slowly getting our little boy back. It does scare the heck out of me what all these drugs are doing to his body and his brain. I am assured it is all safe, but sometimes I find that hard to believe. This once very coordinated little boy now has trouble with balance, speech and holding a pen.

Addison is the biggest trooper through all this. She is my eyes and ears when I actually step away from Jake. I am coming to realize life is going to go on and I need to let him live. therefore, I have let up on he constant following him around "waiting" for him to have a seizure. This is where Addi has been amazing. She reminds Jake of his limitations (no climbing on the stools, table, windows etc), informs me in much detail of seizure activity ,and never complains! That little girl is amazing. She has been shuttled around from relative to relative , denied things that were once a staple for her, missed her parents, as they left in ambulances or er trips, and continues to be so strong and loving! I need an ounce of what that girls has!

God Bless~ Christine

3 comments:

Brandy said...

She gets it from YOU, you know. You are so strong. Always have been.

April Robison said...

Your family will be on my mind and in our prayers.

andrea said...

Your family is always with us. Dylan feels for Addi and is sad for Jake as we all are. Love you guys.