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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Seizures suck!
OK new medicine...supposed to control everything and make life great...sucks!!! at least so far!!
ugghhh, we are
soo discouraged and don't know what the heck to do.
Basically, Jake had been having a seizure
the past couple days, about every hour. And if it is not a seizure, he is recovering from a seizure, so his speech an mind are not "quite right."
After more than 6 months I truly thought we would be further along
than this.
Our next move, stay tuned, is Austin, for the Cares Clinics, and then Germany , for stem cell research.
Call us crazy, but we need to save our little boy!
It is a funny thing about life; if you refuse to accept anything but the best, you very often get it.God Bless~ Christine
PS~ I am truly trying to note more details, but it gets sickening at times...I am recruiting friends to blog for me!
2 comments:
Do whatever you can to help him- "whatever it takes" remember that???? PHS???? Explore every possibility you can and in the meantime just pray to get through it- we are all here for you. Focus on the good times- easier said than done, I know. I wish I could just scoop him up and take it all away, I have no idea of what you go through daily to see Jake like that. You were chosen for this, just be strong and give it to God when you want to yell out SEIZURES SUCK!!
Let me know if you do come here so I can help out. I want a shirt too but can't come to the stroll. I am upset about that but I have a job fair to go to. Anyway, you are doing a great job even if at times it doesn't feel like it. Take a moment and reflect and refresh. We are all here for you.
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