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


Tuesday, May 26, 2009

Memorial Day

We had a fun, long weekend. It gave me a glimpse of what this summer may hold, in only 8 more days!

The kids swam, swam, and swam some more. I am not quite sure how they managed to stay in the frigid waters so long, but they made it happen. They would emerge from the cool pool with purple lips, goose bumps, and shaking limbs, lay in the sun wrapped in towels to get some warmth back in their little bodies, only to once again, dive back in in a matter of minutes.

Our dryer got a major workout, as I always had a toasty towel, fresh- from- the -dryer -towel ready to go after each swimming session.

Jake has been wanting a mohawk for awhile now, so I did it! I took him to the hair stylist, to snip his gorgeous blonde locks off.
It hurt!
It hurt so much to see those curls fall to the ground and pile underneath his chair. However, Jake was proud as a peacock, sitting in that chair after telling the "hacker" he wanted a mohawk.
I made sure he knew "faux-hawk" would be sufficient and waited for the torture to end.

Hiding under all that hair is such a bloated little face. I am certainly ready for this balloon face to deflate. I am embarrassed that I don't have a better picture to share, but he is so busy lately, I have to take what I can get.

The kids had a great time cruising with Papa in his MG.

We all went to my brother and sister in laws house for some swimming yesterday.

The kids and I, before all "this" started back in August, would go, or try to go once a week during the summer and on Labor Day and Memorial Day to greet the troops who were coming back from Iraq for RR.

We had planned to go yesterday, however the 7:55 arrival time was a bit too early for my over sleepers. They were disappointed to say the least.

Jake knew we were heading to the Memorial Day party and announced "I can't wait to see the soldiers and give them hugs and say Thanks!"

He thought they would all be at my brother's, because the day was for them. He repeatedly asked me, "when will they get here?"

It has been a while since I have blogged. I am feeling a bit guilty about that, but finding the time while waiting for a seizure, is quite difficult.
Jake has been doing great in regards to seizure control! However, he is not "quite right." I am unsure how to explain it, but something is just off.
He stumbles, drools, can barely hold his eyes open, and takes 3 naps a day.
I know this sounds awful, but when he is on he is on and is great. I believe that is why the kid stays in constant motion. If he slows down or sits still, these side effects hit like a ton of bricks.
I can't say he has been "seizure free" for the past 2-3 weeks, as I think we may have had some little tonic clonics in the wee hours of the morning. These are only lasting 2-5 seconds, however they "are happening" so I can not therefore say we have been seizure free.
I watch him constantly just waiting for him to drop to the ground. The anxiety and tension that comes with this waiting is unbelievable.
I pray that this is the beginning to the end, but we can never be 100% sure of anything any more.
Never let the future disturb you. You will meet it, if you have to, with the same weapons of reason which today arm you against the present.
God Bless~Christine

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