We are battling again :-(

The last few weeks have been a bit difficult for Cameron. He began having an increase in the frequencies of his seizures so we followed with our usual increase in meds. Normally he takes a couple of days to adjust but this time it hasn't been so easy. He now battles with lethargy and an inability to stay on his feet for any length of time in the mornings. It has gotten so bad that I've had to pull him from school until we figure out what's going on as it's just too unsafe for him. He will wake up at 7am and by 8 he's asking to go back to bed. Most every morning these last 2 weeks he's taken 2 naps before noon. Also, last Saturday, he woke up with a stutter that has progressively gotten more severe with every passing day. In a recent discussion with a neurologist I've decided to break his dose up or 3 times a day instead of 2 in hopes that the smaller dose of meds in the morning (which is the same dose he was on before the increase) would allow him to gain some stability and be less tired. But hat hasn't proved to be the case. So off for blood work we went last night. And the lab screwed up the tests so results I should've had his morning, I now can't get until tomorrow. I just don't know what to do for him. What if all his med levels are within normal range? What then? What could be the cause for all these sudden changes? I have to believe that it is meds simply because by 4pm, he's back to being as close to normal as possible for Cam. I'm beginning to wonder if I need to request that another long term monitoring study be done; however, that would require another solid week in the hospital. But I don't know what else to do. He can't continue to live like this. He can't go to school. *sigh* well, I guess we'll wait to see how his tests come back in the morning. On another note, I have a child psychologist/behavioral therapist coming out to the house tomorrow night! I am so excited for this visit. I am so frustrated with the anger issues Cameron seems to have. And am at wits end with how to deal with it. I cannot wait to learn some new tips and tricks!!

These Are Some Of The People That Made This Trip Possible

I apologize for the lateness of the thank yous but here they are:


Dan Burl @ FiberTech - 1st donation
Aunt Sharon -wonderful family
Aunt Sybil -wonderful family
Beverly - my Godmother
Cameron's Nana
Jen Savino- Cameron's 1st Vision Therapist
Shannon Haley - Cousin
2 guys from MetLife
Kush Patel @ FiberTech
John Sciortino - Segar & Sciortino
Debbie Davies - Segar & Sciortino
Erin Boardman - Segar & Sciortino
Michelle Hodge - Segar & Sciortino
Amanda Hastings - Friend
Nicole O'Brien - Friend of a friend
Mary and Joe Buono - Family
Shawna Henderson - Sister
Scott Henderson - Dad
Lorenzo Vergne - Brother

And all of the numerous companies in this office complex that donated over a hundred dollars in returnables!!!

Beginning the push!!

I have started the push for fundraising and adding team members!! I brought Cameron to his Musikgarten class tonight and "Ping," a light went off. Where better to begin my search for support in raising awareness and funds for music in hospitals than at a children's music class. Tomorrow I will be making flyers to bring in because Ms. Karen has been so wonderful by saying she'll pass them around. Yay! Also, an I know this may sound far fetched, but I have also tweeted to Ellen in hopes that maybe she'll take interest, and also because I'm sure so many people read her tweets that the odds of people around the country clicking the link to my team website and/or this blog are pretty good. At least I'm hoping so. Honestly, I'm not even interested in donations from them, simply looking to educate as many people as possible about Cam and his condition as well as the awesomeness that is The Stroll for Strong. Anywho, I am so excited for all of this and truly hope I will gain as much support as I'm hoping. I am networking for he first time in my life, and this is the first time in my life that I've made connections that have made it possible to network. I have never felt so good about myself. I love raising awareness and support for causes that are near and dear to me and it doesn't get much nearer and dearer than the 2 loves of my life, my babies, my boys, Cam and Nic!! I <3 them both more than life itself and would give them the world, if possible, but since it's not, I figure I'll give them something else, something better, a beautifully innocent childhood, the belief that if you want something bad enough, you need to fight and work hard, and that if you cannot do it by yourself, there ARE truly generous people out there that are willing to support and help you. Cameron will be raised to have the confidence to believe in himself and his ability to accomplish anything his giant heart desires, and Nicholas will have that as well as a deeper understanding that people with special needs are no different then you or I, and deserve to be treated with just as much respect as any other person. Both of my children are and will continue to be strong with deeply seated good morales and love, lots and lots of love, and hugs and kisses!!! K, here's the link to my team page: http://www.helpmakemiracles.org/team/moore2love

Apologies for not keeping up....

I must deeply apologize for never following up after out trip to Boston. So here is a quick summery: Cam and I flew to Boston in a million dollar personal jet! It was gorgeous and a great flight. Now the visit itself, 95% disappointment. I had made an appointment with a neuro-ophthalmologist, which I had been under the impression that she would both brain and eye, which, if you've read about the condition, would've been perfect. Well, it turned out she was basically an eye doctor. So you all helped me get to Boston for a simple eye exam :-( The disappointment was so intense that I didn't want to talk about the trip with anyone. I had worked so hard to get us there thinking we were going to learn new things. The only thing I learned, and something I hold dear and will keep with me forever, is just how generous people are. I am grateful to have that and feel incredibly guilty that I promised I would keep everyone posted as to how he trip went and how Cameron's been doing. So there's the update on the trip. Now, I'll talk about Cam. Post-trip, Cam was still having roughly 4 seizures a day. We fought with meds for almost 3 months. Then, on Feb. 3rd, his neuro gave us the go-ahead to put him on a new med called Onfi, which had only been passed by the FDA on Jan. 1st. It is in the same class as his clonazepam, but studies had shown it to have a higher efficacy rate, and less side effects. I was excited. On the morning of Feb. 4th, Cam woke up sick so I brought him in to see his pediatrician. Diagnosis: sinus and ear infection. We were given the antibiotic, Cefdinir, and sent home. Now, at this point, we hadn't started the Onfi, we were scheduled to start that night. On that evening, I gave Cam his round of bedtime meds: Keppra, Carbatrol, Vitamin B6, and the newly added Onfi and Cefdinir. When Cam woke up on the morning of Super Bowl Sunday, he was, well, off, to say the least. He was awake for only a half hour before he went back to bed, then slept for another 5hrs before waking up and staying awake for only an hour that time. He also hadn't eaten or drank anything in close to 48hrs. I began to get nervous and placed a call with the pediatric on call doctor. Oh yes, I have to also add that Cameron couldn't walk by himself either. He just couldn't stand up, so unstable and wobbly. It was suggested I bring him into the ED. Turns out, Cefdinir can affect the metabolism rate of Carbatrol, which I have to add, was not in any literature, nor mentioned by the dr. Basically, my son was ODing on 1 of his seizure meds. That antibiotic caused his levels to skyrocket making him severely lethargic and unstable. I was absolutely beside myself. Had I waited until the morning, he would've had 1 more dose of Cefdinir and 2 doses of Carbatrol. I could've unknowingly killed my baby. I could've OD'd him. Even now, my stomach turns and I get tears in my eyes. How could this happen? Why was this "possible interaction" never mentioned? The next morning, I called to speak with his neuro. While telling the nurse practitioner what happened, she confirmed that it wasn't listed on neither the Carbatrol or the Cefdinir's labels. But his neuro overheard and said that, yes, it was a known possibility. Problem being, only he was aware and he hadn't known that the Cefdinir had been prescribed. That led to immediate phone calls from me to both the pediatricians office as well as the pharmacy. And a discussion, 3 weeks later, at an Epilepsy Foundation support group meeting. How could this happen? How could such a serious drug interaction not be mentioned on either drug label? My son could've died!! Thankfully, I trusted my gut/mother's intuition. I will NEVER question myself again! Okay, I don't want to discuss the sad and scary anymore, so let me talk about the weeks following. Since starting the Onfi, Cameron has only had roughly 5 seizures in over 2 months!! And he is also more alert and more stable. Onfi has proven to be a "miracle drug," and I couldn't be happier. Now I can focus on the next scary milestone....Kindergarten! Lol! I will save the story of the beginning of this journey for my next post, most likely, later today :-P I just have to add one more thing. For the last couple of years, I have participated in the Golisano Children's Hospital's Annual Stroll For Strong and 5K event. However, this year, I am starting my own team! I am super excited to be doing this as neither of my boys would be where they are now without the amazingness of every pediatric specialty team there. I am asking for support. Please help me hit my goal of $500 that I have chosen to be designated to enhance the music therapy program at the hospital. Moore 2 Love will be walking on June 2nd, 2012, and hopefully, it will be a huge turnout like always!! Here is the link to my personal fundraising and team website:http://www.helpmakemiracles.org/index.cfm?fuseaction=donorDrive.participant&eventID=1080&participantID=112450 Please consider supporting this great event! And if anyone is interested, please come walk with my family. I would love to see everyone there!!! Again, my sincerest apologies to all those who made our trip to Boston possible. I hope you will forgive me for being unable to update you all sooner. Alright, until my next post, have a great Sunday! I hope it will be as lazy as my own!! Lol

My Little Sister Rocks!!!!!

I went to Hornell this weekend to collect returnables from family. Upon arriving, my sister hands me a glad container full of change....nice...then I open it and there is a wad of bills in there as well....awesome...Shawna and I sit down and count it.....$101...AMAZING!!! She had placed cans in a few local gas stations and a convienence store. Holy Cow!! We also returned a truck load of cans, of which were half my dad's and half my brothers, for a total of $28!! I am so proud to have such an amazing family. My heart hurts from all the love!!!! I will never be able to thank you all enough for making this trip a possibility.

Almost there!!

In 3 weeks you all have help me hit $600!!!!! You people are amazing!! Now let's see what we can pull off in 6 days!!

Halloween ^-^!!



Cameron at school




 

Happy Halloween from the Moore Boys!!!