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


Sunday, January 18, 2009

Mission aborted and more

Many have been wondering how the diet has been going. The diet is not going. We aborted this mission after a week, less 4 pounds, lethargy, dehydration, increased seizures and fevers.

We were beginning to lose our little man again,much like the many blogs that started this site. He was having a difficult time forming sentences, having motor control, and with loss of strength. Our little guy was leaving us, so we pulled the plug.

Was it the diet? Who knows, but we needed to decrease our variables in Jake's life, to fine tune our knowledge of what may trigger seizures ans cause adverse effects.

We are still weaning on to a new drug and off of a drug, he may have had a fever that week, I went back to work, after staying with him for 2 weeks straight, and we started the diet. We were really unsure what was causing Jake to disappear again, so we chose to remove at least one variable, the diet, and see what happened.

The first day after starting Jake on a normal diet again, he joined us! He was back! We were still having many seizures a day, but his personality and spirit were once again with us.

We will indeed retry the diet if need be, however we want to wait until we are completely weaned on to this new medicine.

and More (the comedy)

My sister in law finally "got it", I think. We were visting her early last week and we had an incident that i think made her appreciate the comedy, that is the Peters household.

Lisa and I were sitting at her kitchen table, as the kids played. Jake walked passed me to go to the playroom. I followed for some reason. Maybe to watch him, maybe to go to the potty, who knows, but I followed. I am 2 steps behind Jake when he....(all together now)...."bites it" and hits the linoleum floor. Jake and I are now about 10 feet from Lisa, but around a corner. Because there are 5 other kids in the house, I try to nonchalantly, let Lisa know I may need a little assistance. I calmly announce to her, "Jake fell, it doesn't look good."

No response.

me: "Yeah, this is not pretty, help?!"

no response

me (over Jake's wailing): "it's dripping, it's dripping.

By now blood has drenched my socks, the floor, Jake's shirt, and is pooling in my hand that is cradling Jake's mouth area.

me: "Hello? "It's dripping, it's dripping!"

now I See this hand creep around the corner with a wad full of paper towels.

Phew, Now I can assess the damage and cleanup a little bit of ourselves before tending to the floor.

Lisa is still unresponsive, but hands me more wads of paper towels!

Apparently blood freaks her out. Welcome to the Peter's family.

About this time Matt calls.

I am sitting at the table with Lisa, on the phone with Matt.

I proceed to tell him, over Jake's wails, all is well. Matt continues to ask Jake to quit crying. At this moment I rip the phone from Jake's ear, as Matt can't see the cause of the crying and I didn't want to upset either of them more.

Right about this moment, as I hung up the phone, Lisa snapped a photo of "the scene." The humor, to her, was that I was reassuring Matt that everything was hunky -doory and she was witnessing something quite the contrary.

Blood was embedded in the diamonds in my ring, in the groves of my fingers, the cuticles of my nails, and was still oozing out of Jake's mouth. This was after the frantic "clean up."

"Every thing's fine!":-)

We probably could have hit the er after this incident, as his frenum was completely torn, there was a huge gap, and another added slice, from the New Years Day massacre. However, I am not sedating my baby for cuts that will heal on their own, but just take longer to do so.

"Laughter and tears are both responses to frustration and exhaustion . . . . I myself prefer to laugh, since there is less cleaning up to do afterward." [Kurt Vonnegut, Jr.]

God Bless~ Christine


Fawn said...

Oh, Christine, I really feel for you. I never want to see a tonic-clonic seizure ever again, but scary as they are (and potentially dangerous) the seizures I hate the worst are the drop seizures. Jade has had so many injuries from them. How sweet of you to be reassuring Matt so he wouldn't worry. I wouldn't be able to not tell my husband if I were on the phone with him right after a bad fall like that.


andie said...

You are unbelievable!! I wish I could do more to help you and your family. I wish I could tell the world of your strength. Keep it up and my prayers are always with you guys.

Brandy said...

wow...I am so glad you have such a great sense of strength and calmness. Not to mention, your unbelievable support system. I don't even know Lisa, but am so thankful for her. Isn't it nice to know that you are not going through this alone? In so many ways we are all on this journey with you and just remember that you are never alone. We are ALWAYS here for you and it is quite apparent, Lisa and the rest of your family are not only, behind you, but right beside you. Love you and miss you. Kiss that boy for me...

lisa a said...

Yes all~ because of her calm voice and lack of scary words, it took me awhile to realize that I need to get clean up supplies. When I turned the corner, it looked like a massacre had occured in the hall and I had to ducck away to keep from fainting! God only gives you what you can handle, which is why my children are not squrting blood every day! He obviously know that Christine has the strength and sweet soul to get her child through this~ and with a reassuring smile to all!