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.
With three children, or even without three children for that matter, I could always use help with the housework.
The kids helped me quite a bit today. :-)
The good thing is they think working like this is a HUGE treat, or "reward" if you will. Being able to spray cleaning products, does not seem like cleaning to a 5 and 6 year old. It s waaay different than me asking them to clean their room or put their clothes away.
I have a lot on my mind, especially with the upcoming Fourth of July weekend. A lot of feelings and thoughts that I can't quite get together yet. Mostly about the anxiety and the different aspects of Epilepsy that no one really realizes. No one, including people that have been battling this beast with us. the things that seem so small , or not even part of epilepsy, but in reality , would not even be relevant in our lives, if the beast would not have ever entered it.
So with that being said, I promise to update, hopefully every day this week. I have been avoiding the blog, as I have not known how to deal with what I am actually feeling inside. Well, that, and the fact that I have still been dealing with a 102 fever. mommies are NOT supposed to be sick...there is simply no time for a mommy to be sick. She has too much to do!
Here is a pick of Sweet "Mini Coop" at 3 weeks old. He now stays awake for a couple hours in the morning and a couple hours in the late afternoon. this is huge, as we honestly thought something was wrong with the kid, as he slept soooo much! it's been 5 years since we were parents to a newborn, we are relearning everything....well, at least I am.
Drag your thoughts away from your troubles... by the ears, by the heels, or any other way you can manage it. ~Mark Twain
the sun, lounging in the pool, long days, and pretty flowers.
lately, though, summer is just a big ball of stress.
A couple of Jake's major seizure triggers are heat and lack of sleep.
so in trying to prevent seizures, We try very hard for him to get enough rest and stay cool.
It kind of seems unfair to me, as summer vacation is a kids dream. Jake and Addison would like nothing more than to swim all day long, come in to eat dinner and then swim some more.
As much as I, a sun worshipper, would love to adhere to this schedule, it has proven to be awful for Jake. While we try to set limits for Jake, Addison is also effected.
Looking for things to keep them busy on these long summer days in the Texas heat, has proven to be quite a challenge.
Jake has been slowly recovering and regaining seizure freedom from the mistake of missed meds two weeks ago.
However, yesterday we tested the limits for Father's Day.
The kids swam all morning with my dad. They came in for lunch and a short nap and then hit the pool again with Matt for several more hours.
We put Jake to bed fairly early, as we recognized the business of his day. However, within 30 minutes of him falling into a slumber he had 2 tc's.
Uggghhh, it is so difficult to balance what the kids needs and wants are.
On top of brainstorming ways to keep the twerps busy, I have found myself dealing with a 101-102 fever the past couple days. I am sure this doesn't make their days any more fun, as all I have wanted to do is feed the baby and then rest on the couch.
I have happened to find an awesome snow cone shack that certainly helps to cool us off on these hot days, and even found shrinky dinks to help occupy their time in an air conditioned atmosphere.
But lets face it, as fun as these new adventures may be, they only last a short time and are certainly not as fun as wasting away the long days of summer outside.
(Jake is barking like a seal)
The kids present to Matt...it was framed in a horizontal, 3 window, black frame.
and finally, this is how the kiddos wrapped up the day. Addison rocking and reading to her little brother.
Then followed that beautiful season... Summer....
Filled was the air with a dreamy and magical light; and the landscape Lay as if new created in all the freshness of childhood. -- Henry Wadsworth Longfellow
As of 5:12 pm, Tuesday, 6/8/2010, there is a brand new addition to the Peters' family. And he coudln't be cuter. We are so blessed by our lil' guy. Addison and Jake are just smitten and can not wait for us to join them at the house!
Of course, nothing can be "easy" for us, so the day was quite interesting.
It started at about 4:00am with Jake having a 20 second nocturnal tc. I was appalled, as this was longer seizure than I have recently come accustomed to. Jake also lost control of his bladder. He has not done that in numerous months. Obviously, I was quite baffled and disturbed and threw any more sleep out the door.
That seizure was followed by another one about 30 minutes later...and then another one soon there after.
After about 6 seizures and loss of bladder control 2 more times, between 4 and 6:00am., we finally just woke him up.
This, as expected, put an end to those nasty things.
In between seizures , I, of course, started brainstorming, "what had changed", to make this particular night a "break through" night. I 't didn't take long for me to realize, that in all the excitement of getting ready for the early departure to the hospital, we had forgotten to give Jake his night time meds.
So around 4:45, I quickly made thee decision to pull the trigger and give him one of the missed drugs and then wait a couple hours to give him his "regular" dose of the rest of the medications.
Although it was terrible to see such early morning happenings and they couldn't have happened on a worse day, iIwas glad that there was a reason for the madness.
Matt and I departed for the hospital at about 7:00, after we got Jake settled with his Granny.
Upon arriving at the hospital, we were "checked in" and Dr. Garner broke my water at about 8:00 and started Pitocin around 8:10. He took wagers on how quickly this lil guy would make his entrance.
His, the dr.s', the specialist, and the experienced professional, was by 12:00.
We toke his word for it and were releived that by 12:30 we would surely have another sweet addition.
Well, 12 came and went, as did, 1:00, 2:00, 3:00 and 4:00.
It turns this third child of ours was quite stubborn.
Although I was progressing, his head was turned at such an angle that he wouldn't move down the birth canal.
After many position changes and acrobatics on my part, at around 5:10 it was go time.
Can you tell I am excited?
Everyone was shoved out of the room and by 5:12 our lil man was here!
Cooper Austin Peters
7lbs 1 oz
blessed our lives at 5:12 on Tuesday, June 8, 2010.
All it took was one easy push!
He is just a doll and we are so very blessed.
The kids awaiting that first peek
I can not wait to share pictures with you all, however, because my computer is still in the "shop" the and computer I am currently working from is very much a downgrade, I can not access pictures and upload them .
Once I am able to though, this page will be exploding with photos of our little miracle!
As for Big brother Jake, he is caught up on his regular medications and is doing much better. He did have a couple seizures last night, however they were far less intense and much shorter than those of the night before. Hopefully tonight will bring no seizures at all.
“Birth is the sudden opening of a window, through which you look out upon a stupendous prospect. For what has happened? A miracle. You have exchanged nothing for the possibility of everything.”
We have been wrapping up the end of the school year, celebrating birthdays and anniversaries, splashing in the pool, playing on the sun, celebrating small victories and stumbling amongst minor set backs.
My computer has been on the fritz, so this very much makes working and blogging very difficult.
To sum up the past week, without pictures, as everything is on my computer currently getting "fixed" through my school district, it has been a wild one.
I celebrated my 29th :-) birthday, Matt and I celebrated our 10th anniversary, and we rejoiced in Jake being 2 weeks seizure free.
However, last Thursday, I got "the call."
Jake had a big tc at nap, at school.
My heart sank. I had been praying soo hard that this "good streak" would continue. I literally felt like I had been kicked in the gut.
Then, several minutes later, I got another call....Jake had a 102 fever.
I smiled soooo big!! I was so happy!
Why, you ask? because a high fever could mean that the seizure was a febrile seizure and not the works of the damn beast!
After, skipping gymnastics and running Jake ot the pediatrician, we learned Jake has a sinus infection.
I asked for different antibiotics than he was on a couple weeks ago, as I am certain it was causing seizures and we went on our way.
The fever cleared up and we have been seizure free since then, until today. He had a small one at nap. This time, however, no fever...so this is probably the works of the beast.
Also, as we swam, attended the Colonial golf tournament, and simply just observed Jake , we have noticed a trembling in his hands.
This is very frightening, as this is what I so vividly remember his hands doing all the while he was having drops, and jerks. I fear that they could be coming back!
I refuse to get too worked up, until he finishes his course of antibiotics. Hopefully when he finishes the meds, the twitching will too vanish.
Hopefully, after this week is over, the school year ends, and I get my computer back, I will be able to share some great pictures and even better news!
The Peters family has set up a trust fund for Jake to help with hospital bills, ER visits, medicines, and anything else Jake will need for the future. You can help this family out by clicking the secure paypal link below. If you have questions about donations or wish to do it by other means, please contact me at firstname.lastname@example.org. Thank you so much for your support!
Stop!! Before you shop, go to http://www.shop.epilepsy.com/ . All purchases made through shop.epilepsy.com help fund epilepsy research, therapy development, and epilepsy education initiatives through The Epilepsy Therapy Development Project and Epilepsy.com. Almost every store is represented and it tells you how much is earned with your purchase! AWESOME!!!
*Epilepsy is a condition caused by periods of abnormal electrical activity in the brain. The disruption of brain signals leads to a seizure
*More than 2.7 million people in the U.S. have epilepsy. Roughly 200,000 new cases are diagnosed each year
*About 326,000 patients with epilepsy are children 14 and under
*Atonic seizures (drop attacks) cause a sudden loss of muscle tone and collapse. Since the symptoms occur without warning, patients are at risk for serious injuries from a fall.
*Generalized tonic clonic seizures (grand mal seizures) initially cause stiffening (tonic phase) and breathing disruptions (including breathing cessation). The symptoms are followed by limb and facial jerking and a return of breathing.