All 4 Jake: Embarressed

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

Monday, August 9, 2010

Embarressed

I am so embarrassed that it is so long between posts. I keep telling myself I will get better and then I go to look at the date of the last post and it is weeks not days!

Therefore, I will post this evening, however, it will be short and boring.:-)

We went to the neurologist today. I so look forward to these trips. I am not sure why, but I literally count the days between appointments. The visits usually take all of 15 minutes, which are far less than the hour car ride there and back.

Today was a good day.

Last night we put Jake to bed and within 20 minutes he was already seizing. That sucks! Even spookier, is when you watch him on the "night cam" on the video monitor, the seizures are much more disturbing than in person. His eyes are wide open and glow like some demon child. Then there is the delay. Uggh it weirds me out even to recall the way it looks.

However, even having seizures last night so soon upon falling asleep. Jake has been doing much better.

Dr. H noted it, as have a few friends that don't see Jake all the time. The have stated that his gait is much more steady and his speech is much improved. I don't always notice these " little things" as he is my shadow throughout the day.

Dr. H said that this improvement is most certainly because the seizures are diminishing in number and in length! YEAH!!

So although seizures suck, I am so very happy to be seeing fewer and fewer of them.

Lately the biggest "Jake dilemma" is his excessive talking and question asking!! The child never quits!! We ask him "Jake do you ever stop talking?" and his response is "yeah, not so much?"

Although, the nonstop verbage is QUIT annoying, I remind myself of the many months when he was barely verbal. And when he did talk you could barley make out what he was speaking, as his words were so jumbled with nonsense, drooling and slur.

So, as the non stop drilling of questions continues I try to remember these times and be thankful for the thousands of :
"Mom, why, how, what's....?"

For this annoyance I am so very thankful!

Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful.”