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 13, 2008

Every time I get "comfortable" with all "this" we regress. This regression is just a little, but all too weird for me. Jake has been having more seizures, and some of these bigger ones. Not necessarily "tc's" but bigger drops. He was getting to the point, that I think he could sense a seizure coming on, so instead of dropping, head crashing, chin knocking, he was kind of "melting." I could see in his eyes he knew what was going on. Looking at a three old with this "look" is just weird. Especially when this 3 year old was, 3 months ago, soo normal, or as the grandmas like to say gifted. The Grandmas still think all this is going on because he is too smart and his brain doesn't know what to do with everything coming in. This weekend we have been back to "hard head knocks" followed by twitches, that scare me that I "tc" is soon following.

We will swing by the neurologists office tomorrow. :-) I don't think they know what's about to hit them. I am loaded with brownies for the nurses, b/c of all my daily calls. I surely hope they allocated a bunch of time for us, as the questions may never stop.

Starting from the first hospital stay, we have always given Jake, what we thought was, open ended promises, we have sworn to Jake with "when you get better," "after this poke," when you get your stitches out," "after they take this blood for the ump-tenth time," we will go fishing. The "We will take you fishing" ALWAYS subdued him. Jake would then go into describing countless Sunday mornings, sitting with Daddy watching some boring fishing show, that the both of them thought was better than sliced bread.

This is the kid, who staying at the hospital, and more people than I can imagine, gave him books, coloring books, games, etc......only wanted to read "Texas Fish and Game" or Texas Wildlife" or the Cabellas catalog.

Well...our open ended promises are coming true!!! We usually go to the "beach" every year with my best friend, and maybe some other best friends and their families. Each year it changes, as to what "best friends" may be able to make the trip due to illness, newborns, or pregnancies. This year I am unsure why we didn't go, but it was all for the best. We usually go late July...if we would have gone this year with Jake, who knows what would have happened. The Lord works in mysterious ways.

Back to the point...My best friend and her family are graciously offering , of maybe after much begging, their beach house to us for a week. One of Jake's dreams is coming true!! He can run on the beach, roll on the sand, go fishing at 4:00 am with his daddy,not wear the darn helmet every time he wants to play, and most importantly spend time with the family he has missed so dearly during hospital stays, Daddy's stints at work, or Addison going to school.

We leave for Santa Rosa beach bright and early Wednesday morning! The family and I are elated and can not give enough thanks to the family that made this happen for us. This is probably one of Matt's and My's most favorites places on earth and we can't belive we are actually given the opportunity to go.

We are so blessed by this vacation and truly feel that Jake will get better because of it!

God Bless~ Christine

3 comments:

Julie said...

You are going to have a blast at the beach- this is going to be so awesome for your family- to be together and reconnect without the daily stresses!!!! I wwill be thinkging of you every morning at 11:27 ;)

andie said...

This trip is truly going to be one of a kind. You need and so does the family. Have a great time!

Lisa A said...

Will miss you dearly, but am soo excited for you! Can't wait to hear the neuro report!