2 years ago...

2 years ago today Michael had his first seizure. Looking back, we have come so far. It has been a long and arduous road and we have learned so much. We have lost friends along the way, but have also gained so much more. Our love and family bond has become incredibly strong. Our perspectives have changed and things that used to seem important, aren't so important now. We still have a long road, but feel so blessed for where we are today. We would like to thank God our Lord and Savior. Without Him, we would have had nowhere to turn. Also, the angels who touched Michael, and our family and friends for all their love and support. Thank you and God Bless~

Strides for Epilepsy 2010

Briana and I did our 2nd annual 5K Strides for Epilpesy in Denver City Park this past Sunday. It was wet and soggy but cleared up a bit during the walk. Despite the weather, we had a blast! I had some great friends of mine come out to support the cause which really meant a lot! We are looking forward to next year!

Funny well visit

I took Michael to his well visit a couple weeks ago.
Leave it to Michael to say what's on his mind. It was our pediatrician and a resident. When the resident walked in, Michael immediately looked at him and did the "I'm watching you" sign. That's when the fun began.
Then the resident was doing the exam and proceeded to take Michael's shoes off. Sometimes Michael wears his shoes without socks so they can get pretty stinky. So when the resident took his shoes off, Michael said, "smell my feet." The resident said, "that's ok, I can smell them from here." In the meantime, our doctor is tearing off paper from the exam table and having a paper fight with Michael and Landen. There was paper everywhere. Then when he was testing Michael's reflexes, the resident tapped his left leg and Michael made his right leg go up. He was being a total clown.
Finally and the best part... after the resident was done with his part of the exam, our pediatrician finished by listening to Michael's heart and such. Michael then said, "your breath stinks." We were laughing so hard at this point. The doctor said it was b/c he had an Italian sandwich for lunch. I told him not to take it personal b/c he tells me my breath smells like eggplant!!

A Milestone....

Yesterday we decided it was time for Michael to "re-learn" how to ride a bike. He learned when he was 6 yrs. old like most kids, however after he was diagnosed with epilepsy, one of the first things the doctors said was, "no more riding bikes in case he has a seizure and falls."
Now that we have been seizure free for a year now, we decided it was time. Michael was very scared. It took a lot of coaxing and persuasion to even get him in the car to go to Walmart. He cried saying he was embarrassed. It broke our hearts but we kept encouraging him.
We finally chose the bike and headed to the school to practice. Within 2 minutes, Michael was off and riding. The smile on his face was priceless, I wish I had my camera! We kept telling him how awesome he was and how proud we were, but more importantly, how proud he should be of himself. I told Michael as he was riding, "you faced your fear and conquered it!" He said, "yes, I faced my fear and blew it up!"
When we got home, I told him to go ride around outside with his friends. Once again, the smile on his face lit up. He happily told his friends, "I learned how to ride a bike today." His friends were telling him, "great job Michael, you are doing awesome!"
This was such a proud moment and special day for us! We are making progress.

EEG

Mike took Michael to have an EEG today to find out if he is still having subclinical seizures or any type for that matter. The results could take up to a week. Depending on what they see, this will determine how we proceed with Michael's current health plan. Please continue to pray for Michael and all the other children suffering from this horrible disorder, especially our friend Aidan. I know they all will fight this beast! God Bless~

The Latest...

Michael has had dizzy spells over the past 1-2 months and he fell at school on Monday and banged up his head pretty good. The neuro team wants him in for another EEG this Friday...hopefully we won't see evidence of new sz activity. Keep your fingers crossed!!

Stopping the Med Wean (for now)

Dizzy spells continue. Michael's teacher also reports that he was out of it and in his own world this previous week...so the sz's may be starting to creep back in-The Beast won't go away quietly. I hate this personally and I hate it for every person impacted by this disease. Strength, Hope, Faith, Courage

Perspective...

Michael mentioned he had a dizzy spell again last night. Waiting to hear from the doctor. Although with our friend's son in a medical induced coma to stop his seizures via burst suppression, dizzy spells don't seem so bad. My heart breaks for them. I don't know what I would do if that were my son lying there. Prayers to Aidan, Karen and Ben.

Med Wean-Keppra

The med wean (keppra) continues to go well...keep your fingers crossed!! Will have another 5-6 months of weaning for this and then we move on to wean his other meds.

Learned today that one of the kids Micahel met at Children's hospital is not doing well. The Dr's are going to place him in a med induced comma to see if that helps with his sz's...hang in there Aidan! You are in our thoughts and prayers.

Stay the Course & Roll the Dice

Michael has no school on Friday-so we're off to the Dr's to get an update. We're going to continue with the med wean process...as of today-we have been dropping his meds since January. Dizzy spells seem to be the only issue-we'll take it for now!!! You miss 100% of the chances you do not take...

The Beast

So Michael's form of Epilepsy is called "the beast." There are days when you think you've beaten it and then it happens again out of nowhere. Went to baseball practice with him the other day and he told me his his "mind was spinning." I asked he what he meant & it turns out he gets dizzy spells. Have no idea what causes these-could be from the med wean-but just another thing to think about as this process has continued for almost 2 years. It drains you in every aspect and everyday is a fight...fight on!

February '09-Neuropsych at DCH

This day would be at the top of my "lowest moments" list.
We were scheduled for a Neuropsych to begin initiating Michael's IEP for school and to gage his neurocognitive functioning and to assist with clinical management. With all the seizures he was having, this particular day was horrible. It was an 8 hour test with 2 15 min breaks and a 45 min. lunch. I had my 9 month old baby in tow waiting outside for Michael to be put through a mirage of testing by the hospital's psychologist.
He was having so many seizures that day, they weren't even sure if he would be able to finish. He was hallucinating and saying words and colors that weren't even there. Having drops and absence left and right.
The final outcome was heartbreaking. He went from grade level back to kindergarten level. We rec'd an 8 page heartbreaking report. Weaknesses were noted: Verbal memory was far below average, expressive language skills, including naming and verbal formulation as well as attention and executive functioning skills, including working memory, response inhibition, self-monitoring and planning/organization. Verbal memory was also far below average. "These findings are likely related to Michael's medical history. Children with epilepsy are at greater risk for cognitive problems."

My little boy was slipping out of my fingers...I felt so helpless, how was I going to save my son?

Dr's Appt Today

Jenee took Michael to the Dr's today. Pretty basic appt...however they wanted to know why weren't following the medication wean that they had suggested. It was just that, a suggestion. Everytime we make any changes to his diet / meds...we're always sitting on the edge of our seats, watching and waiting. Epilepsy is not an exact science...all we can do is get out of bed like we did the day before & go get it done.

Cool News-Michael has joined chess club and has picked up the game quickly. I love playing with him.

Thanks everyone for your kindness...it goes a long way.

What SZ's

Within weeks of that late May event...Michael was sz free...at least from what we could see. Which of course is not a guarantee. It's all about Hope, Faith, Strength, and Courage.

Mom and family were a great support for us during this entire time...I think they had every church in the country praying for Michael. She lit a candle for him every day. We were receiving precious pendants, Holy water, Holy oil and cards and gifts. Priests, Nuns and children all over were praying for Michael. Our priest gave us a St. Michael pendant-it is Michael's favorite item from all of this-St. Micahel is is the protector and defender who killed the beast.

All we can say is that we're thankful for every day that our my little boy comes back to us.

We still have a long road ahead of weaning the meds and diet but we are taking each day as a blessing...things are starting to look up!

May Miracle...

Jenee was putting Michael to bed, and he said, "I hope the angels come again tonight." My wife said, "what do you mean honey?" He said, "angels have been coming in my room at night and touching my head." Jenee came back to our room to tell me what Michael just said. We both were in awe.

The next night I put Michael to bed and asked Michael if the angels came again? Michael said "yes."

I asked Michael if he talked to the angels, if he saw the angels-he didn't, he said "he just felt them touching his head."

This happened two nights in a row in late May.

May 2009

Coming up on a year...what was keeping us going? What was keeping Michael going? He was still having massive sz's. In early May there were a few days that he had almost 100 sz's per day. All we could do was watch, wait, hope, and pray.

It was probably our lowest moment...

Jan-09-New Drug Approved by FDA

Read about it on the internet...why not give it a shot??

Talked with Dr. at Children's...not much research done that she is aware of and only has one other patient on Banzel. Let's go for it...not much else working at this point.

The only other thing keeping us going-our faith and the prayers from others that knew our story.

Oct/Nov/Dec-when it rains it pours

I don't even remember all the drugs Michael was on at this point. We were starting to see upwards of 100 sz's per day. Had to put Michael on Ativan and Lorazepam to stop the seizures. It was like watching a drunk kid, he couldn't walk or say his ABCs. Heartbreaking to see your child like that.

Took a couple of days off from work and Michael and Dad flew to Boston to go to Mass General to see their specialists.

Learned about a potential new treatment (diet) LGIT. Why not-let's give it a try.

No luck yet-Michael was showing signs of cerebral palsy at times...I remember a call with one of the Dr's from Children's-all he could say is he remembers Michael and he is "so sorry were going through this." Doose Syndrome presents in rougly 3-5% of all epilepsy cases.

Drugs and More Drugs

The sz activity was non-stop...he was now on Keppra and Lamicatal. We increased the dose of Keppra quickly.

I stopped keeping a spreadsheet of sz activity in August. It was too draining and it was the same thing over and over again...we were seeing anywhere from 20-40 sz per day...all different kinds of sz's.

School was just around the corner...get the plans in place: Medical Documentation/ER Plan/Staff Training/Individual Education Plan

We were spinning. Life was out of control, at this point I was more concerned about our Daughter-the adverse impacts on her were tremendous...she will always be my hero...she really helped pick up the load and helped take care of our newborn!!!

June/July 2008-things are getting worse

I started to keep a spreadsheet to document the sz's that Michael was having...we were calling the neuro ward almost daily at Children's hospital to keep them updated with our documentation.

While driving home toward the end of June we were on the interstate 25 when Michael had a grand-mal sz. I was driving-my wife was screaming to pull over-I was yelling at Briana (10 yr old) to time the sz and then yelling at my wife that we were 5 minutes from St. Anthony's...I got off the highway and pulled into the ER entrance of St. Anthony's...we decided not to go in-we were dealing with it. He was breathing again.

From July 4th - July 12th: Micahel was having about 15-20 sz's per day...those were the ones we saw...so it was probably more. He was having drop attacks were he would just fall to the ground, as well as absense sz's were he would just "zone out."

The neuro team was concerned and wanted him back in for another EEG on 7/14.

That morning 7/14, I was helping him brush his hair and teeth and he had a sz. I literally caught him in my arms as he fell. He stopped breathing for about 20-30 seconds, we put him on his side and watched...he was blue...but started to breath again within 20 seconds or so. Took him to his EEG appt in the am.

Dr. from Children's called back that afternoon...his EEG had changed. The Dr was a little vague. I asked alot of questions-eventually the Dr told me that based on his various sz activity, this put Michael in another class of epliepsy.

July 15th: Got the call from the chief at Children's-his Dx: Doose Syndrome / MAE.