I am so happy to report that our family walked in the 3rd Annual National Walk for Epilepsy yesterday. It was raining, but not as cold as I had expected, so I am thankful for that. We got downtown in enough time to get our Starbucks and see some of the tents they had set up before the Walk. It was a great day! Our team raised $2,490! We had 24 people in total walk! Next year, I hope to double the money raised and the people walking with us! Kenzie did great, she rode in her stroller the entire walk. Last year Wayne had to carry her on his shoulders. She had so much fun with all the people there. Our team got a picture with Alan Faneca, from the New York Jets. He has had Epilepsy since he was 15. Here is a link for his story on the Epilepsy Foundation website:
http://www.epilepsyfoundation.org/epilepsyUSA/faneca.cfm
He is a true inspiration and a supper nice guy! After the walk we all went and had lunch. All in all it was a great day!! I will upload the photos as soon as I can!
Kenzie is doing ok. She had a total of 25 seizures yesterday, but I guess that was because she got up early and it was a long day. She is averaging about 15 seizures a day still. We have an appt with her Neuro on Monday the 6th. Her behavior has not been all that fun. She is moody and angry a lot lately. I think it has a lot to do with the meds. Another issue for the Neuro on the 6th.
The boys are doing well. Corey got on the baseball team he wanted to get on! He is so excited about that. I think he will have a GREAT season!! Ryan got on the team he wanted as well and is doing well! His flag football team is rocking! The are 2-0 now! So cool!
I will blog after Kenzie's appt, hopefully with so much more info!
March 29, 2009
March 15, 2009
I offically have a teenager! Corey turned 13 on Monday! WOW! He has baseball tryouts next Sunday, it was today, but got rained out. Ryan has started his practice for baseball and flag football! Crazy I know, but I am confident that we can handle (Ryan too) 2 sports at the same time!
Kenzie is doing good! She is still having atonic seizures and now is having myoclonic seizures. We are averaging about 10 a day between the 2 types of seizures. It honestly seems to be a pattern, this is how it all started last year. She started having atonic seizures in late January and started the myoclonic in February, March. Hopefully, with her being on different meds than last year and with us upping the meds gradually maybe we can stop the pattern, before we hit the tonic-clonics.
She will start her second session of therapeutic horse back riding this Thursday. She loves it! She is doing so well! Kenzie knows when we make the turn from the main road to the stables, she starts 'calling' her horse and smacking her leg! When Dixie comes out into the ring and the helper comes to bring her to Dixie she starts 'running' to her. It's really great to see her so excited about this. I thinks it's really helping her. She tries to communicate more with us, and makes a lot of little noises.
We went to her re-eval and she has been given a label. The label for her now is OHI, Other Health Impairment and MR, Mental Retard. It was really hard to hear MR. I know it doesn't change anything, she is the same little princess we all love, but for someone saying your child is MR, is a tough pill to swallow. According to the social worker at her school this will get her more services through the state and more options for schools too! I don't think she will go to our home school, I am hoping she will go to the same school she is at now. They already know her and love her, even the principal is under her spell! But, she will obviously be in a different classroom. We will be able to visit the schools with MR programs before we comment to anything. Although, that will not be til the end of the school year. I'm just a little nervous about the change for her.
March 28th is the 3rd annual National Walk for Epilepsy! I hope all of you will join us in the walk! Go to www.walkforepilepsy.org, search for Team New Hope! If you can't walk, please consider supporting us!
Epilepsy Facts:
Over 3 million Americans have Epilepsy
200,000 new cases are diagnosed each year
45,000 of children under the age of 15 are diagnosed with Epilepsy each year
In 70% of new cases no cause is apparent
February 2, 2009
Things are crazy around here as usual! Kenzie is doing really great! She has started her horseback riding and she loves it! Her horse's name is Dixie. She is a beautiful white pony. Kenzie will say 'whoa' and is trying to say 'walk on'. She will ride her horse around the ring and wave to us as she goes by. Kenzie is really enjoying herself! I'm so happy it's working out for her. At first she was very apprehensive. She started crying and was a scared. But the woman who was helping was very gentle and great with Kenzie. When she put Kenzie on Dixie, Kenzie kicked Dixie and the horse didn't even move! I knew then we had a great horse! Her evaluation went very well and so she will ride for 8 weeks this winter. If she continues to do well and we are interested then we will sign up for 8 weeks in the spring. Every time when Kenzie sees a horse on tv she gets excited and will make a 'horse noise'!
We have a re-evaluation coming up for Kenzie tomorrow at school. The school has tested her to see if she will still meet the requirements for services through Fairfax County for the coming school year. This is something they do every 3 years. This is our big one though! Her teachers, the county psychologist and social worker along with her OT and Speech therapist will be the ones making that decision. Kenzie will also get a label. The label she has had for 3 years now is DD (Developmental Delay) is only valid for Child Find children. Once the child starts kindergarten she must have a label more specific than DD. I know she will qualify for services, I'm just nervous about the whole label thing. I know a label will only help her and not change her, she will always be Mackenzie! So if I just ask for prayers!
Ryan has been doing really well with his wrestling! He has placed 1st 3 times and 2nd 2 times! We are so proud! They are really long days, but we all enjoy them! We have had several of our friends come to see him wrestle, it's been fun this season!!
Corey has been doing really well with basketball. Although, his team has yet to win a game, Corey is playing really well! We are so proud of him, he has come so far from the summer!
We have also signed both the boys up for baseball already! Planning for spring, WOW! Corey will be playing Babe Ruth, which is with the bigger kids now! I can't believe he will be 13 in March! Ryan will still be with WSLL (West Springfield Little League), but there a few Majors coaches looking at him this season! Majors is the highest you can go in WSLL, it's not so common for 9 year old kids to play majors! Plus, Ryan is a catcher which is huge thing too! (So they tell me!)
School is going really good for all the kids as well!! We are very blessed!
Don't forget to join us for the 3rd annual National Walk for Epilepsy in DC on March 28th! We have a lot to be thankful for this walk! Kenzie has been seizure free for over 4 months now!! So join us in walking and raising money for a cure for the tragic disorder!!
January 4, 2009
My first entry for the new year!! I'm so excited to report that Kenzie is doing GREAT!!! We have reached 3 months of being seizure free!! How awesome is that ?!!!
Christmas Eve Kenzie woke up with an ear infection, so of course we had to take her to her pediatrician. He put her on antibiotics and ear drops. The next couple of days she was little cranky, but that was all! I can handle cranky. Christmas was great! The boys got a lot of cool things and Kenzie got a few baby dolls. But, I think her favorite is her new Elmo Live. It's such a cool toy, he tells stories and plays games. Very interactive. Corey got a dell laptop, from Grandma!! WOW! I'm jealous! Ryan got a few jerseys. It was a great Christmas! We had dinner here with all of the family and some very close friends!
On Thursday Ryan will be 9 years old! I can't believe it! My kids are getting so big! Wrestling is going great for him. He got first place in his first tournament on December 13th!
Corey's first basketball game is on January 17th! He can't wait for the game to start!
Kenzie will start therapeutic horseback riding lessons on Thursday! We are so excited, I think it will really benefit her! Although, in October we went to Cox's Farm and they had some horses. She was terrified! She loved horses a few months earlier, not sure what happen there! So I am hoping she will return to her love of horses! We will see!!!
Well, I think that is it! Things are really going well on the medical front here! We are so blessed! We have so much to be thankful for!
Don't forget to sign up with Team New Hope for the 3rd Annual National Walk for Epilepsy on March 28th in DC!! I hope to see you all there!
November 6, 2008
We are officially at 40 days! Wow, God is good! Kenzie does once again have a cold and is on her 2nd round of antibiotics. Her pediatrician thinks she may have allergies, just like the boys and me! How did they all get Wayne's good looks and my stupid allergies! How funny! We are doing really well! Her behavior is a little bit off, but I imagine being sick and the Topamax isn't helping either. We have her IEP coming up on the 18th of this month . We will be talking about getting her evaluated for kindergarten next year. Can you believe it! She is getting so big!
I have finally figure out how to put a slide show on here, I hope you all enjoy it!
I have signed up (as well as the rest of my family) for the National Walk for Epilepsy! I will be sending everyone an email inviting you all to join us on March 28, 2009. I'm so excited! This is such an awesome experience! Last year there were over 8,000 people and over $2 million raised! This year our team goal is $5000 and I am faithful we will reach it! So watch for my email!
