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


Thursday, September 25, 2008

I changed Jake's slide show music to a song from "Mamma Mia" that I thought was pretty appropriate. Jake and Addison LOVE this soundtrack and know many of the words to most of the songs. Not only is it fitting, as Jake constantly begs to listen to "Mamma Mia", but the title says it all.

"I have a Dream"

Jake, like any other kid has sooo many dreams and aspirations. However, these have changed drastically over the past 6 weeks. They are no longer dreams of "when I get big I want to be a fire fighter" or "I want to go to Disneyland again." Unfortunately they have changed to much simpler things that I and , I bet many, take for granted. He now dreams of climbing up on the playground, going to the restroom with out some one holding on to him, not having to wear his helmet as he walks across the hard woods in our own house, not having to "stay on the grass" when we are on a walk. He dreams of sitting at his dinner table, instead of picnic breakfast, lunch and dinner on towels in the family room, playing baseball "next year", playing hockey "next year", and swimming with Addison. (according to Jake the past is "last year" and his future is "next year")

These dreams have also changed for my family and me as well. We now dream for the day that, the boy who was walking at 9 months and climbing by 10, can walk out of bed on his own, a morning that he won't have 4-5 seizures before he yells "come and get me!", a day when we don't have to use a video monitor, as he plays 20 feet away in the playroom, a day when he can hold his own fork again, or not get frustrated when feeding himself. I am looking forward to a day that I can see all these toxins, we call medication, actually helping his body not harming it.

As parents we dream of so many things for our children. I can not believe how drastically mine have changed.

I will continue to dream and have faith that maybe one day we will wake up from this horrible dream.

God Bless~ Christine


Brandy said...

bawling. I don't think I realized, as I am sure you have not wanted to talk about, how the little things have changed. I don't think I really sat and thought about those little, but now very big, things that are so difficult. Thank you for sharing. It will get better and you will reach that place. He will walk on the sidewalk and he will climb the monkey bars. He will. It will just take time. I love the new song. If you feel like burning me a copy of Mama Mia - feel free. I'd love to get Ian to love Jake's favorite songs!

Sharon said...

Christine, Brandy has told me all about your story, and your blog. I came out here this past Monday to begin reading. I made one mistake. I began reading it at work! I was bawling my eyes out. Having 2 kids myself I cannot even imagine coping with this. He will get better, he is going to play football, and baseball, and he will have a normal life. You have a lot of strength, and so does he. He sounds like a fighter. Not that I matter here, but I under went open heart surgery at the age of 4. I am here to tell my story, and he will too. You are a very strong mom. You and him are so blessed to have each other. My thoughts and prayers are with you and your family.

Sharon (B's friend in FL)

Lisa A said...

Wheesh! That entry needed an "you're about to cry your eyes out" disclaimer! I will never forget our night of climbing, swimming, and dancing under the stars before this hell started! How blissfully unaware we were. We will get back there, my friend. Jake is one tough cookie and he will get through this. I love you!

Jennie said...

I can no longer read this at work. I can't do it without crying. Oh my gosh Christine.............I don't even know what to say.

Julie said...

Ugh- I don't know what to say to that- because I cannot even imagine how I would cope with having to deal with all those things you are.

Thank you for sharing C- it means a lot!!!

You DO have a fighter on your hands!! Think forward to the day when he has his own children- he will have a feisty little boy, and you will laugh as you think back to your own feisty little boy.

This is only temporary.