All 4 Jake: Normal , at least for now

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

Sunday, March 7, 2010

Normal , at least for now

We are out of the hospital!

Matt was with Jake , as he was admitted Wednesday for the BIG steroid treatment. While it was absolutely killing me, being away from him and not being able to be the one to interrogate the doctor and nurses with questions, I needed to stay at work for in the infamous TAKS test.

I arrived Thursday morning with Addison. We relieved Daddy of his duties. Addison also met and talked with the child life specialist. She has been a having a tremendously difficult time watching Jake continuously seize and be shuttled to and from appointments and hospitals.

The meeting , along with weekly counseling sessions at school, have had a very positive effect on her. She still gets very weepy and sad watching Jake and his everyday struggles, but also understands it a bit more now.

It is so heartbreaking watching both my babies struggle so much emotionally and physically. I want to just yank It from both of them and protect them from all of this.

As we arrived Thursday morning, I was disappointed to learn that Dr. H had already met with Matt, therefore I probably wouldn't be able to bombard him with questions!

Matt however reported that Jake's last seizure was the previous night. That was great news.

Dr. H ended up coming back around Thursday evening and informed me that Jake was doing great! Not only did he look a lot better, so did his eeg!

It turns out by the time we left Saturday morning, Dr. H used the words 'normal" and eeg in the same sentence!! This has not happened in at least 18 months!

You can only imagine our elation right now! I realize things could make a turn for the worse, as they did August 2008, but for now I am praising God!

Not only does his eeg, look very much improved, but so does Jake.

He is definitely swollen from the treatment already, however he is doing so well!

His mind and his conversations seem so real, normal, and clear. I find myself just staring at him while he talks, wondering how things can turn upside down so quickly.

He laughs, he remembers, he jokes, he speaks so clearly the past two days. I am beside myself with glee! I have said it before, but I guess I didn't realize how much he could truly improve. Even his drooling and his gait appear so much better to me!

I honestly can't quit staring at the kid and waiting to hear what comes out of his pretty, little mouth next.

I am , however, cautiously optimistic. We will take one day at a time, but for now we will live and love in this moment! Because here in this moment, with my family all in own house, and healthy for now, I am elated and could absolutely not ask for anything more. I have all I have ever wanted! I could not ask for more!

"I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail." ~Lamentations 3:19-21