seizure free & loving it

 We got to go to Indy!  I was so afraid of having to cancel because of illness...but Suzy improved through the day last Sunday, so we hit the road.  I will let the pictures tell the highlights of the trip we made. 

Of course the reason for the trip was to go to Jack's neurologist appointment.  Everything looks good for him, and our Dr. had encouraging things to say.  Dr. McGuire is a such a genuine & sincere doctor.  She loves her job and kids, you can tell that by how she interacts with Jack and our other kids.  I love her sense of humor and her down to earth personality.  She told us that statistics show when kids like Jack who have a normal MRI (meaning no masses or cysts on the brain) but an abnormal EEG is abnormal (meaning a tendency towards seizures -with no explanation of why they happen) Usually there is a 50%-60% chance that the child will outgrow them.  She also encouraged us by telling us when the seizure happens in the front of the brain, like Jack's~ there is a better chance of outgrowing then.  Also his prognoses is good, because he does well at being seizure free on only one medicine and on a low dose of the medicine he takes.  All things that remind me how much I have to be thankful for.  He has been seizure free for 10 months!  Praise God!  So for right now he will stay on his current dosage and re-visit the neurologist in 6 months.  Jack will need to be seizure free for 2 years before the Dr. will take him off of medicine.  So very much to be thankful for this Christmas season.  My heart is completely full, for healthy children that are asleep in their beds tonight and seizures that are a distant memory.  

While in Indy at Cracker Barrel for breakfast...

William: "Are we going to pray?  I know it's going to be embarrassing but we gotta do it."

Donovan: "William it's not embarrassing.  This is a Christian nation, lots of people pray."

William: "o.k. well let's do it."

jack

My fear monster is back. The nagging little tug that pulls these strings and teeters between almost forgetting what happened last night and then remembering and having this fear pierce through my heart. Making me want to find that little 7 year old of mine and not let him out of my sight. Last night another seizure came. It lasted about 5 minutes. It was awful & scary. We held him, and felt helpless and we watched Jack's lips turn blue, his face grey, and him be totally unaware that we were there. Watching as he seemed to be choking on his tongue, wishing there was something~anything we could do to stop it. After it was done, he passed out. We carried him to our bed...and watched. Wanting to sleep...wishing I could get the ugly fear to stop replaying the seizure in my head. Telling myself....He will be o.k., far more children~have it far worse, this seizure could've been longer~more severe. Praying for him. But then giving way to tears...again. Glad for once to listen to Jack snore~knowing he's sleeping peacefully. And listening to his daddy snore beside him, knowing he got it from him. It has been 6 months since he has had a seizure. I wrote about it here.

Our Neurologist has told us when his seizures are over 10 minutes that we should call 911~ under that time frame to keep him home and follow up with him the next day. Which is what we did today. He changed Jack's medication and increased the dosage. We follow up with the Dr. for bloodwork in 2 weeks and again in 6 weeks. The triggers are many~we suspect that it was because he was over-tired and exahusted. It was around 11 p.m. when he got to bed.

I need your prayers if you can support me that way. I'm trying to balance healthy concern and fear. Letting go and letting him return to normal everyday activities. Letting him be in the basement to play with his sister, letting him go off to school in the morning, and this little guy has a birthday party this Friday to go to for his best friend. Wanting him to go and not all at the same time. Wanting to let go and let God be God~Wanting to let Him strengthen me, and refine me. But letting my fear get the best of me at times.

jack

Monday I took the kids swimming and met 2 friends at the pool. We had an awesome day at the pool and after we spent almost 5 hours swimming we came home and I put Suzy and William down for naps and Jack and I crashed on the couc h. (Isabella is at camp this week) Jack was not happy about laying down...so I thought I'd lay with him to calm him down a little. After about 15 minute s I feel asleep but awoke to Jack twitching and fidgeting. Not unusual for him. He wasn't happy about taking a nap in the first place. We were going to a birthday party that night, and I wanted him to rest up. I told him to knock it off or he could go down and lay in his bed. He still kept messing around, so I told him to go downstairs and lay in his bed to rest. I was half asleep. He got up and made his way to the kitchen to go down. I lay there and listened to what sounded like him throwing a fit on the stairway. Like a temper tantrum because he didn't want to go down. I laid there for about a minute listening to him and got up to find him on the floor in a seizure. He was unresponsive to me talking to him. He was laying on the floor unable to move his legs. He was trying to talk but made no sense. His arms were flopping on the floor. His eyes were roll ed back. I ran out to get Donovan who was mowing the lawn. Who came in and helped me move Jack to the couch. The seizure lasted about 3-4 minutes. We called 911, and the ambulance came. By the time the paramedics came Jack's seizure had ended. His eyes were fully dilated and he was confused and but could answer various questions correctly. Like do you know where you are, your name, how old are you? The paramedics recommended he be checked out by the hospital, so we had a neighbor come to stay with Suzy and William who were sleeping and we drove to hospital. They ra n tests on Jack along with a blood work up and urinalysis. Everything checked out normal. They said sometime kids who are over tired can have seizures and we would chalk this one up to exhaustion. We were to follow up with our pediatrician the next day. They also gave us instructions if he has another seizure to come back to the ER. So we were discharged and got home about 9:30. By the time we got the kids in the p.j.'s and to bed it was almost 11 p.m. Jack was exhausted (like the rest of us) and he fell asleep immediately in our bed. I went to take a bath and when I got out of the bath I h eard this moaning, I ran into our bedroom to find Jack in another seizure. This one was very different. Jack's arms were stiff and straight up in the air. His lower body still unable to move, he made a choking noise as if he couldn't breath. He was turning grey and his lips were turning blue. He kept looking up at the ceiling and could not talk to us. From when I got into my room and noticed the clock said 11:11. I timed his s eizure and it lasted 5 minutes. I felt so helpless, while I was holding Jack during this seizure it felt like he was dying. It was hard to tell if he was breathing, and he kept making such an awful noise as if he couldn't breath. William was still awake and scared. He saw everything. I didn't have time to explain what I didn't even understand myself. We called 911, called Donovan's parents, and the neighbor to stay with the kids until Donovan's parents could get here. The hospital admitted us, started an IV with medication ready and waiting if he would seize again. They took us up to the 3rd floor about 2 a.m. We slept as well as we could, I snuggled right next to my little sweet 7 year old in his hospital bed. He was hooked up to heart monitors, a pulse monitor and IV. I was thankful that the nurses could monitor him from their station, and we could sleep. Jack woke about 5 a.m. yesterday morning with no clue where he was or how he got another IV in his arm. I explained what he couldn't remember and he went back to sleep. We all slept until 8:30. Our pediatrician came to talk to us and recommended an MRI and EEG also was requesting Jack be seen by a Neurologist. Last night about 6:00 we talked to the Neurologist who evaluated Jack and gave us a game plan. He explained to us that some seizures are unexplainable in why they happen. Jack's seizures were not typical. And because he had 2 close together he recommended a medication that would prevent them from happening again. During both of Jack's seizures no harm was done to Jack or his brain. However seizures lasting for 20-30 minutes can cause permanent brain damage. So the nurse started the medication by IV last night and his 2nd dose orally this morning. He will be on this medication for 1-2 years. It will hopefully work to keep all seizures away. It's not a guarantee but this medication usually does take care of them. There are also several o ther medications we can try for his age, if these have adverse effects to him. Jack's EEG did come back with some abnormalities. Showing a tendency to seizures. We are thankful there were no masses or something life threatening causing these seizures. The neurologist is hopeful that Jack could out grow seizures or that he may never have another one on this medication. I am praising God for letting us keep Jack. So many things could have been different in the last 3 days. I'm thankful I was able to be there with him (as horrid as it was) d uring his seizure. I'm thankful he wasn't riding a bike when his seizure hit. I'm thankful for this to remind me how precious life is and how much I take it and our family for granted. I'm thankful for Donovan's parents who took care of Suzy and William, thankful for caring neighbors who came to help us. Thankful for my family and friends who support and call. Thankful for my sister who met us at the hospital and stayed with us while we waited, and brought us meals. I'm thankful for the meatballs and potatoes baking in my oven right now left in my frig by my little pregnant friend. Jack is great. He is his old self, full of spice and energy. At the hospital he had full access to his re mote that controlled his bed, feet up, head up, feet down, head down....he was loving playing with all the controls. He also loved having a remote that controlled full access cable. THEN....he ordered from a kids menu that was brought to his very cool bed. At breakfast yesterday he told Donovan, "I am living the dream dad!" Eating breakfast in bed WHILE watching cartoons. So please pray for Jack if you think of him this week. We are also scheduled to close with our house on August 11, moving on August 10th. So we have a lot of things changing around here.

Leaving the hospital today....sorry bad quality from the camera phone.

My quote of the day comes from Rose's little girl, Sophie. They came to visit at the hospital last night...and during the visit she went to whisper something to her mom. I found out later this is what she said.... Sophie: "Mom, if I get sick like Jack...I want this exact room." Jack had been showing her the controls to his bed, the remote to the TV and his birdhouse he got to paint.