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


Monday, October 6, 2008

We had a great time at the Cattle Baron's Ball!!! It was great to get out of the house, but a little surreal as well. We really didn't know what to do with ourselves. Matt's been away from the kids, but only in a work setting, however this was my first "outing" away from the kids since late July at all.

Addison has now, after going to her cousins football game, changed her Halloween outfit to a cheerleader. Jake has also decided he wants to be a football player like his cousin...he wants to also be wearing the same number as his cousin. I am totally fine with this, as long as the costumes are coordinating. I know there will be a year in the near future when they no longer let me dress them in coordinating costumes, but it looks like I squeaked by this year. They have been a cowgirl and horse, Tinkerbell and a pirate, Dorothy and the lion and this year we were planning on Pocahontas and an Indian. I will admit, I am a little ridiculous, as I try to plan "next years" costume while we are trick-or-treating the current year.

I have been told that I must update"correctly" on Jake and his progress. Seizures have really not been the topic on this blog, as I think the activity is way down and I kind of don't notice it anymore. However, whenever people see Jake and then have an opportunity to talk to me after their visit, they inform me that maybe I have gotten too used to it. I guess that point was made even more noticeable today. I took the kids to their peds office and we all got flu shots. Their ped saw us and stopped what she was doing to ask how Jaker-Doodle was progressing. I informed her, "All is great! We have like 10-15 seizures a day!" She looked at me like I was crazy!!

Jake is having seizures anywhere from 5-20 times a day. However, they are getting much shorter and appear to be more clustered at the same time of day, as opposed to 5-20 all day long. The drunkeness also appears to be dissipating a bunch too. He still has his moments when he can barely hold his head up, but it is no longer 3-4 hours long.

I don't know if I have gone into total "mommy mode" during all this or if I am getting my strength from another friend I have met since this all started. Although we have never actually met, I have met a Friend who has a little boy about Jake's same age. He and his family been battling this a lot longer than us and he has much more intense symptoms. While I was having a my own pity party a couple weeks ago, I heard from her and her son was paralyzed from this monster we call epilepsy. While consulting doctors, they assured her "this is fine, it's normal, it will only last a couple days." He did get better, but then he was paralyzed on his one side right after this. How is this normal? And as a parent how can we not ask why? and why aren't you helping? This is not normal. Our sons were just walking,talking,playing, running through fields,planning their next big expedition. Now they can't see past their next specialized diet of next set of meds.

I think what I believe, which never hit me before, as I teach several kiddos with epilepsy, is no one truly knows and it is a very complicated disease. I believe we don't have "answers", because no one really knows. Even the best of neurologists don't really know. I believe they know what kind of meds can work on each type of seizure, but even that is unpredictable. Many of these kids with epilepsy, on meds, never get "used to the new drugs" in their system as Jake seems to be doing.

We have a loong way to go. We are on only 20 mgs of his Lamictal, and we need to be up to 50mgs. That is by increasing 5mg, every week(Friday's for us). We have our next , much anticipated,nuero appt. next Tuesday. I am anxiously awaiting it, as I have millions,if not trillions of questions noted on my little journal. Of these, most include different diets, or herbal treatment.

I hope and pray that through reading this blog people become more aware of epilepsy. I think most people are like me and think "no big deal." However there is still soooo little known about it that is truly scary.

God Bless~ Christine

1 comment:

Jennie said...

I can't even imagine what you have gone through. All I know is that your son and daughter melted my heart the other day we were there. You are so strong and I admire your courage and strength through at time most people would turn away from God and life and you have never waivered. You are truly amazing Christine and adore you and your family. you guys are awesome.