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


Wednesday, September 17, 2008

Still waiting.....While at Childrens Hospital we custom ordered a helmet for Jake, as his seizures changed from tc's to drops. This drop, or atonic seizure, is why we ended up in the ER after being released from our 2nd hospital stay. He was using the restroom, "dropped" and cut his chin open.

The helmet was supposed to take 6-8 weeks...after seeing too many black eyes, knots on the head and bloody lips, Matt and I decided just to pay outright for the darn helmet to speed things along. This "speed" is waiting another 4 weeks! Today, I swung into a sports store around the corner and they have youth hockey helmets with chin guards! I was able to, luckily, cancel the darn "custom silver, to be like Romo," helmet, supposedly get my money back and finally get the kid a helmet he is in LOVE with!! Why did I not think of this 6 weeks and 8 stitches ago?! So now Jake has a helmet with a full face guard that he is in love with and mommy can have a little more peace of mind. The biceps are awfully sore from carrying around a 3 year old everywhere we go, in fear that he may fall! Although I will miss the instant workout from carrying him, I am mighty glad he can now walk places on his own.

God Bless~ Christine

1 comment:

Holly Phillips said...

Christine, my heart goes out to you. As a parent, I can only imagine all of the things that go through your head on a given day. Your Jake sounds like a real trooper, and I have faith that he will soon be back to a normal toddler's life. Not that it's much use, but I am a pharmacist, so if you ever have questions about meds or just want a second opinion, please don't hesitate to ask. You can e-mail me any time at hollyjphillips@msn.com. God bless!