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


Friday, October 3, 2008

We have had a pretty busy last few days. Matt went back to Houston on Wednesday, I have started to take Addison to school, we visited a fire station with Addison's pre-school class, then joined them for a picnic at the park, and went to my nephews football game.

The kids and I were sad to see Matt go back so soon. However, it is just for a short trip, as he will be back tomorrow. Our weekend is pretty non-stop as well. Addison has 2 soccer games, a birthday party and we get to go to the American Cancer Society Cattle Baron's Ball! Matt and I are sooo very excited to get dressed and spend some time together, as we have not had an alone moment literally since the end of July. Although I am stoked about the event and seeing our favorite singer, Pat Green, it is going to be pretty emotional and stressful leaving Jake for the first time too. Babi, was the lucky one, who got suckered into watching Jake and Addison. Not that Babi doesn't love looking after the kids, but since Jake started having seizures, everyone kind of "runs the other way" when baby sitting is brought up. :-) I am certain that everything will go great...I will just have to leave Babi with a hefty glass of wine to calm her nerves.:-)

The fire station was great. Addi's teachers and classmates are outstanding, and it was wonderful for Jake and I to get out of the house and interact. Addison and her classmates were hilarious, as they could of cared less where they were going, they were just elated to be traveling on a field trip in a "bus!" This "bus" was actually a 15 passenger van. By the time I picked Addi up from school this "bus", somehow morphed into a white limo. So Addison now brags she went on a field trip in a big, white limo!

At the fire station, Addison was very proud to shout out her "brother rode 3 times in an ambulance and she had firemen and policemen in her house once." Jake was not impressed with anything until they whipped out the big tools. These included the jaws of life, axes, and chain saws. The kid is certainly all boy.

Last night we were so happy to see Addison and Jake's' cousins and Aunt at a football game. it has been way too long since we have seem them. Unfortunately I was unable to talk and hug the star receiver, however I was able to pull the "old embarrassing aunt" card, as I yelled his name out the car window as he ran off the field...what 7th grade boy doesn't love hearing his aunt yell "I love you Alvarez" in front of all his peers?!

Not only was is it awesome seeing my sister in law and nephews, but the out pouring of love was astonishing! I am used to the stop and stares, with no words spoken at the grocery store, or mall. This experience was so much more touching. Instead of the kids asking their moms why that little boy is wearing a helmet, or why did his head just hit the steering wheel in the shopping cart, or the moms grabbing their kids and saying "look away" "don't stare," everyone came to Jake and I. I was reassured that so many people were praying and they were on our side. Jake didn't have a dull moment the entire game. He played with the older boys, joined in dancing and cheering with the cheerleaders and managed to find several dirt holes to smother him self in. All this playing and the heat did take a toll on the kiddo though. Throughout the game he did have several seizures. But even when he had the biggest of them and you could hear the crack of the helmet a mile away, my sister in laws' friends came to him instead of running from him, as if they could "catch it." I sit here misty eyed recalling how kind everyone was and how "normal" they made Jake feel.

We went up in meds this morning, so I am unsure if it is because of this or his over tiredness from all his activities this week, that his seizure activity has been up this morning. For about the first awake hour he was having some sort of seizure about every 5-10 minutes. We took Addison, went to the grocery store, went for a walk and jog in the park, and he is now fast asleep.

I too am going to try and catch a few z's while I have the chance. I went ahead and moved his bed back in his room a couple nights ago. Although it is great getting him back to "normalcy," I am lacking big time in the quality sleep department. The first night I tried to sleep in my own bed, but ended up getting a blanket and sleeping on his floor. Last night I got the video monitor and noise monitor and set out to conquer my own bed. As comfortable as it was, I think I logged one solid hour of sleep.

Tonight we plan on renting movies, loading up on magazines and spending a peaceful, restful night at home, until we start it all over again tomorrow.

God Bless~ Christine

OH I did go ahead and pull out the old booster seat for Jake. I was tired of the kids eating in front of the tv, on the floor for every meal. Jake loves it, for now, as it is "new" again.

This reminds me...many have been asking how he got that cut on his cheek. Tuesday he was eating a bowl of grapes, on the floor, wearing his helmet. He had a seizure, his head went forward and broke the plastic bowl, resulting in a lot of blood and a "v" shaped cut on his face.


Jennie said...

Oh my gosh, I am like a junkie and was havin withdrawls with out my daily blog! So glad you guys are getting out and about. Jake is adorable. Everytime i look at him he reminds me of Blake. We need to get together soon.
Love you !

Leslie said...

Wow you have conquered a lot this week! You have made some big steps this week, which means your confidence is building! I am sure Jake loved being out and doing things to.

Julie said...

Hope you have fun at the ball!!! How come you didn't send us pics of you in different outfits?? :)