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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Christine and Jake have returned home from Cook Children's. They have set the stimulator to activate every 12 seconds and have stopped taking the AED they began on Friday. From tonight until tomorrow morning, if Jake seems the same as he was at the hospital, they are to return back to Cook Children's,check in and stay over a few nights. Dr. Hernandez seemed quite worried and did not like what he saw when he observed Jake, but could tell the stimulator was doing it's job and helping. Now that it is set for every 12 seconds, he is hopeful it will help even more. That, along with stopping the "new" med should get him back on track. They may then be able to pinpoint the cause for the increase in seizure activity.
Keep your prayers coming, don't stop. Pray for the same things as mentioned in the previous post. Knowledge, patience, answers, care, strength, hope and peace for the Peters'. Peace that they are doing God's will and choosing the right paths.
2 comments:
yes,PRAY PRAY PRAY!
I will add that the improvment between the seizures has been amazing! I stopped by two mornings ago to find him snuggled on the couch. After a few minutes, he shouted "I'll get it!" and ran out of the room. His grandmother and I looked at each other quizically and he returned with my make up bag that I had left there.
He did throw a few things at me, and I got a few hits as he gets aggressive sometimes after a seizure.
Yesterday, I went to administer the "butt medicine" as his Grandmother was a bit nervous. He saw it and layed down and said "you can put it in my bottom". He was very sweet and I even got a hug that I hadn't recieved in soo long! Before I left, He looked at me and said "I'm sorry". Babi explained that she had told him he needed to apologize to me for the hits yesterday! He then let me give him hugs and kisses! It's so hard to have his personality back and at the same time watch him seize about every minute. It breaks my heart to witness this and I cannot imagine what this does to his mother! When my son has one seizure, I go around crying and in physical pain for days. Christine's strength is truly amazing and God given and I am so blessed to see it!
Brandy...thank you so much for the updates, yesterday I had the peters family in my immediate prayer chain all day and received so many updates of people praying for Jake!! The POWER of prayer! I am glad to know that they are home! I hope that Matt too, is feeling better and can be home soon! We will continue to ask God for well, so much right now, but most of all for God to begin to shed light on the track to getting Jake better! Thanks so much for filling us in!! God Bless! Julie Pool and Family!
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