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.
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
Thursday, September 24, 2009
I called the Hogs alright.
The pig has entered the house! We are now living with the swine and the BEAST!
The Peters' have been quite busy lately. Between doctors appts., a week full of in services, a sick little girl, and a boy that had a long weekend of seizures.
God is good, and a break is in the near future.
Next week we will head back to beloved Florida for a week away "from it all!"
The beast, the swine, and others may follow, but we will all be together, at our most favorite place on earth!
I have some pictures of the photo shoot, for the make a wish national campaign and some videos as well. Jake was a ROCKSTAR! He had way more patience than me, and really played the part , as the actor! I am soo proud of him!
Stay tuned for the takes of the shoot!
We, Brandy and I, are looking to change the blog up a bit, if yo have any suggestions, please let s know!
God Bless~ Christine
Sunday, September 20, 2009
I will start with the freshest tears on my mind.
We had the amazing opportunity to go to the Roundup for Autism last night. What a spectacular event. What an amazing cause!!! Silent auction, good food ,good wine, good friends, good date night night, and amazing emotions!
I sat there and cried at the event. Cried? I am unsure why. But yes, cried. I assume, because I was dumbfounded by the event and the awareness that an event like this can lead to.
No Jake is not autistic, or on the spectrum, but hearing, watching and respecting the cause, did bring tears.
I have said it before and will continue to say it...Jake "was given this " for some reason. I am still unsure why and what our calling truly is, but i know we have some sort of part in God's plan for this damn Doose syndrome!
Wednesday, September 9, 2009
Better us than the twerps, though!
We had a couple of big phone calls this week.
The first being:
Jake has a sponsor for his wish!
The North Texas Chapter is hosting Wish 100. This is a bicycle event here in Plano that we had planned on attending, because Jake is a " wish kid."
A couple days ago, however, I received a call at work stating that UBS raised $6,000 or more and is sponsoring Jake and his wish!
Wow! Words don't explain the way I am feeling.
Because Jake has a sponsor, we now were invited to join in on the "Ink Party." This is a pre-race party where the wish kids get to "decorate" their team's legs!
Oh the tornado will love being able to wreck some havoc on others ..."legally!"
Go here to check out the event details:
I also received a call that Make a Wish wanted Jake to do a photo shoot!
I sent them some of our pictures from the Dallas Cowboy game and they apparently thought Jake was cute, who wouldn't?!:-)
Therefore, they asked if I would be willing to get him involved in a photo shoot for the National campaign.
Hello?! Of course we would!
We went last night to the photographers casting call. She took a few pictures of Jake and now we wait to see if he "made the cut."
Such amazing opportunities!
I HATE the fact that he can even qualify to receive a wish, but since he can I am glad we are able to have the opportunity to touch others lives.
In Jake news:
His Depokote levels turned out high again. Therefore,we had to cut back on, yet, another dose of the medicine. As much as I hate side effects, seizures pretty much suck and scare the crap out of me.
Last night was his first night without his afternoon dose and it didn't go to well.
Jake was up all night long.
Not only was he up, I suspect some or several seizures.
I woke to "the sound" on the monitor. I ran in after waiting awhile, as I was sleeping and kind of forgot the
"sound" only to find him very postitcal. He was "clucking" like a or clicking his tongue for several minutes as I lay with him. This tells me that the seizure was a lot longer than the ones we have been seeing that are under 20 seconds. I suspect this one was at least 1-2 minutes. Hopefully, that was all it was. I am riddled with guilt for not running in there sooner and not knowing how long "it" really was.
I then picked him up at school, lifted him up and felt major arm twitching. This certainly scares me sooo much!! I hope we don't regress and that this is all just with drawl symptoms, as I have read to expect much like a heroin addict or alcoholic coming down from their high.
In good Jake news.....It is UNBELIEVABLE to me that he now, once again, takes showers by himself!
He was doing this before the beast entered our house,but has not in over a year.
Jake now takes showers by himself.
God Bless~ Christine
Tuesday, September 1, 2009
While at school Friday, I got a call from Make a Wish. My heart stopped! Was this the wish? Jake had wished to go surfing back in July, but nothing has been set in stone about the trip. On the other side of the line was a coordinator from Make a Wish, not necessarily granting Jake "his wish", but inviting us to an awesome outing!
They had tickets to the Dallas Cowboy's game at the brand new stadium! I couldn't pass them up, even knowing Matt had already made plans during game time.
The kids and I would go and ask my parents to join us. needless to say, it was an awesome experience! The kids have grown up routing for Da'Boys. They donned their Romo jerseys and we headed out! The stadium is ridiculously cool. It was no stadium, in my opinion, but a 5 star hotel. There were "napkins" with the Dallas Cowboy star in the restroom, as opposed to a blower or paper towels!
The kids had hot dogs, nachos, cotton candy, and bought hats as souvenirs! It was GREAT fun!
I was very worried about the game starting at 7:00, Jake's bedtime, and what that change in sleep pattern may do for seizures.
So as expected, Jake asked to go home at halftime, I am surprised he made it that long.
We were driving maybe 20 minutes when he sacked out.
We were driving about 40 when the seizure hit.
It did scare me, as I had not seen one like that in quite a while, but bless my parents, they were speechless in fright.
We soon got home and I put Jake in bed with me. He had been sleeping in his own bed, but I was a little worried "I might miss something" if he wasn't with me.
As I lay next to him feeling his breath on my cheek, I prayed.
I prayed harder than usual. I prayed for healing, for strength, and for understanding, if he may "relapse."
I lay there and prayed.
Eventually I fell asleep, but was awakened by Jake.
His face was over me.
he looked at me and said "Mommy don't worry the angels are here. They're taking care of me."
I asked where Jake, where Jake" show me!"
He pointed and said everywhere, especially my head.
I still get chills recalling this event. I still don't know if I was dreaming. Al lI know is I feel peace again.
The following morning the kids and I went on our walk.
What did we see?
Addison pointed him out as he flew in the street next to us. She said, " Mommy is that Jake's hawk?"
I said, It is indeed, it is indeed.
Have I not commanded you? be stroong and courageous. Do not be terrified, do not be discouraged, for the LORD your God will be with youwherever you go.
God Bless~ Christine
( for the hawk story go to Sept 27, 2008)