It's been a long while since I've posted on this blog - and oh how things have changed in our lives. I truely can't believe that it's nearing the end of October. The year has just flown by.
Yesterday was October 22nd - X-Day........exactly two years ago we received my sons diagnosis of Fragile X Syndrome.
I sat down yesterday a bit and just reflected on what the last 2 years has meant. I still remember that frantic first few hours of finding out about Fragile X and "googling" it and just the shock and fear I felt. I still remember those first few months just not knowing what to do and just walking around day after day lost and confused.
We've come along way since then. Attended our first Fragile X International Conference, got involved with the Fragile X Association of Michigan, became a board member of FXAM and now a member of the Public Policy Committee for NFXF. Assisting in hosting the 12th International Conference in Dearborn, Michigan and attended my first FX Advocacy Day this year. Fragile X is a part of our lives - and we are not going to let it be a negative. We are going to fight everyday not just for our son but for all the children and adults who are facing this disease.
Everyday I am inspired. Hayden has come so far this year. In January we were really struggling to get even a few words - and today, he is just constantly talking. I can't tell you how many times a tear has come to my eye when I've heard a new word. His school, private speech classes, and therapy camps were just unbelievable this year. We still have some speech struggles - certain letters or sounds - but to hear your child say Momma & Dadda......I just can't think of a better sound.
Just a few weeks ago we went to Chicago to meet with a FX specialist - Dr Berry-Kravitz. The short of the appointment is that Hayden is developing right along the same lines as most children with Fragile X. He is ahead in some areas and behind in others but all-in-all she doesn't see any major areas to be concerned about. We also recently were at a fund raiser with Dr Paul Hagerman - another expert in FX - and he was very hopefuly on new therapies and drugs in the next 3 - 5 years. These are my heroes - these are the people who have dedicated their lives and research to helping others.
The biggest change in our lives, however, is going to happen at the end of March 2010. That is when we will be leaving Michigan and moving to San Antonio, Texas. As part of some changes at my company I was asked if I would be willing to relocate. After much (MUCH) discussion and consideration - we both thought for the betterment of my career, the potential opportunity for our family, and lets face it, here in Michigan, the opportunity to keep my job - this was probably something we should do. We've been to SA once to see the town, look at houses, see some schools - and we were very impressed. It's a beautiful place and has lots to offer not just for me and Tina, but for Hayden too.
We still have some things to work out - final place to live, school, stuff like that. Heading down there another time to look around again and try to finalize some things. One place that we found that is amazing is a theme park that is being built called Morgans Wonderland. This is the first theme park strictly dedicated to individuals with disabilities. Its motto is "A special place for our special friends". Opens early 2010 - so how perfect is that.
So needless to say the next 8 months or so is going to be crazy busy. Holidays, travel, and just the day-to day business that we already have. But I can't complain - life has blessed me with a beautiful and wonderful wife who is just the most amazing person I've ever met. With a son who I just can't put into words how much I love and who everyday inspires me.
Life is good.
God Bless.
Friday, October 23, 2009
Wednesday, July 22, 2009
Fragile X Awareness Day
Today, July 22nd 2009, is Fragile X Awareness Day.
If you read this blog or know me - you know how Fragile X has affected my family. But it's just not my family - it's hundreds of thousands around this great country of ours.
Please visit fragilex.org or fxam.org to learn more about Fragile X and how you can help support research to find a cure.
Tina, Hayden, and I are blessed with the most amazing family and friends. In the past, almost two years, since we received our diagnosis the support and prayers we received is absolutely amazing.
We've learned alot about what Fragile X is, why it has affected us, what we can do to treat it - and I think back and remember asking myself - why me? why us? I know someday I will get that answer. I also know that I need to make the best of everything that comes my (our) way - and I realize everyday how amazing of a blessing Hayden has been into my life.
Sometimes it crosses into my mind "if I only knew ahead of time".....but what if I did know ahead of time....Hayden would never have been a part of my life. So many amazing people I have met would not be part of my life. The person I have become, the strengths I have developed, the passion in my heart that I have would not be part of my life.
It's a struggle, not everyday, but it is a struggle and I know I am blessed to not have some of the struggles so many others do. But I don't regret my life, I don't wish it away, I wouldn't change a thing - because I wouldn't want to not know Hayden.
On National Fragile X Awareness day I have had so many emotions run through me. I really can't explain any of them. I'm actually having a hard time finishing this post - which if you know me, I'm not one to shy away from talking or writing.............
............. God Bless !
Thursday, July 9, 2009
FXAM.ORG
Just finished most of the upgrades and updates to the NEW Fragile X Association of Michigan website. Check it out.
www.fxam.org
(still working on getting our home computer fixed - hopefully in the next week or two)
God Bless
www.fxam.org
(still working on getting our home computer fixed - hopefully in the next week or two)
God Bless
Tuesday, June 30, 2009
Computer Crash
Hello all - I know it's been a while for updates...and it might be a little longer. Our computer has crashed and we are trying to save it AND all our pictures. So it might still be a little while longer for an update.
Hope you all are doing well - and have a wonderful 4th of July holiday weekend.
Be safe & God Bless
Hope you all are doing well - and have a wonderful 4th of July holiday weekend.
Be safe & God Bless
Tuesday, May 12, 2009
Tie A Yellow Ribbon
On May 11th a very good friend of mine - and my brother in spirit - left and went to defend our countries freedom and help those who have been liberated.
I have never experienced saying goodbye to someone like that. To go off and do that is a bravery and a courage I don't know if I will ever know. I'm a truly humbled.
So please - so a prayer for my brother and for all of our troops who are out there for us.
God Bless
May 2009 Update
Bad, bad blogger. No update for over a month. It has been a crazy couple months with lots of business travel and busy weekends. But there is a lot to catch up on....so here goes.
We have been making tons of progress in the speech and language areas. His letter recognition gets better and better, and he knows all his numbers and most of his colors. Words (and attempts at words) are coming more and more frequent. He will help us say the ABC's...if we say "A" he says "B" then we say "C" and he says "D"...and so on. Maybe not perfect everytime - but we are just making huge gains.
He's also pretty good with the number 3. If we ever have to tell him something more than twice - like let go of the dogs tail - we tell him once, and then say "ok, Hayden...1, 2, ....." and he will pipe in with "3". How do you discipline when it's so cute. He also gets so excited whenever he does something right as far as letters and numbers go - and when we say "good job" he just gets the biggest smile and starts clapping. What an awesome feeling.
Just this week we also had another amazing thing happen. Hayden's OT at school sent us a note home that said he wrote the first letter of his name - an "H" (duh, right?). She wrote it down - and he took a pencil and did it himself. I read the note and got a tear in my eye. How awesome is that.
Soccer started again. Hayden is playing in his second season. First day wasn't all that great - we maybe had a good 15 minutes of actual playing time....he was just so exhausted by the time soccer started. He seems to like getting up no later than 6:30am everyday.
We missed the second day, but on the third day we got a helper that I think is really going to be good for Hayden. The whole soccer program is for children with special needs, and the get kids from the community to volunteer and help out.
Well on this day we got a volunteer who spent the entire hour with Hayden. When he didn't want to actually kick the ball or learn to dribble - his helper would just sit on the sidelines and talk and play with him, tickle him, do just about whatever Hayden wanted. This kid had such patience and just seemed to enjoy hanging out with Hayden. It was great because I actually got to sit back and watch while he played. It was really great having that feeling of watching your kid play sports - even if it was just sitting on the sideline watching the other kids play. We will for sure ask for this helper each weekend.
As mentioned in a previous post we had some worries when it came to the ECDD program in our school district. How such great things can be accomplished when the public pulls together. For over a month weekly emails, phone calls, and meetings with school board members and school administrators resulted in a victory. The district eventually realized they couldn't get rid of special ed programs - but they had also wanted to get rid of the special ed director. Well at the April meeting, the board did not even make a motion to discuss the possible termination of the special ed director. With so much concern from the public - the board acted in our interest and I think for the betterment of the district. We still have some financial issues in our district - but I think they can be worked out.
That's all the updates on Hayden for now. I do want to say a little note for my Buppa (grandpa) who we lost on May 2nd. He had been sick for sometime and had been back and forth between a hospital and nursing home for the better part of the last 4 months. I miss you and love you Buppa...say hi to Nana for me.
God Bless
We have been making tons of progress in the speech and language areas. His letter recognition gets better and better, and he knows all his numbers and most of his colors. Words (and attempts at words) are coming more and more frequent. He will help us say the ABC's...if we say "A" he says "B" then we say "C" and he says "D"...and so on. Maybe not perfect everytime - but we are just making huge gains.He's also pretty good with the number 3. If we ever have to tell him something more than twice - like let go of the dogs tail - we tell him once, and then say "ok, Hayden...1, 2, ....." and he will pipe in with "3". How do you discipline when it's so cute. He also gets so excited whenever he does something right as far as letters and numbers go - and when we say "good job" he just gets the biggest smile and starts clapping. What an awesome feeling.
Just this week we also had another amazing thing happen. Hayden's OT at school sent us a note home that said he wrote the first letter of his name - an "H" (duh, right?). She wrote it down - and he took a pencil and did it himself. I read the note and got a tear in my eye. How awesome is that.
Soccer started again. Hayden is playing in his second season. First day wasn't all that great - we maybe had a good 15 minutes of actual playing time....he was just so exhausted by the time soccer started. He seems to like getting up no later than 6:30am everyday. We missed the second day, but on the third day we got a helper that I think is really going to be good for Hayden. The whole soccer program is for children with special needs, and the get kids from the community to volunteer and help out.
Well on this day we got a volunteer who spent the entire hour with Hayden. When he didn't want to actually kick the ball or learn to dribble - his helper would just sit on the sidelines and talk and play with him, tickle him, do just about whatever Hayden wanted. This kid had such patience and just seemed to enjoy hanging out with Hayden. It was great because I actually got to sit back and watch while he played. It was really great having that feeling of watching your kid play sports - even if it was just sitting on the sideline watching the other kids play. We will for sure ask for this helper each weekend.
As mentioned in a previous post we had some worries when it came to the ECDD program in our school district. How such great things can be accomplished when the public pulls together. For over a month weekly emails, phone calls, and meetings with school board members and school administrators resulted in a victory. The district eventually realized they couldn't get rid of special ed programs - but they had also wanted to get rid of the special ed director. Well at the April meeting, the board did not even make a motion to discuss the possible termination of the special ed director. With so much concern from the public - the board acted in our interest and I think for the betterment of the district. We still have some financial issues in our district - but I think they can be worked out.
That's all the updates on Hayden for now. I do want to say a little note for my Buppa (grandpa) who we lost on May 2nd. He had been sick for sometime and had been back and forth between a hospital and nursing home for the better part of the last 4 months. I miss you and love you Buppa...say hi to Nana for me.
God Bless
Tuesday, April 7, 2009
The Outlaw Organic Farming Act
Family & Friends ~
I've recently heard about a bill in the House (HR875) and Senate (S425) called the Food Safety Modernization Act. As part of this bill, which is supported by the food chemical lobbyists, the use of fertilizers and pesticides will be required to "protect" all food - including organic food. Isn't that the reason many people choose organic food, because it doesn't have fertilizers and pesticides?
When we switched Hayden to organic food - we saw a change in him within weeks. We started getting more sounds and now he is starting to talk. Is it all because of organic - no - his teachers and the hard work Tina put's in is part as well - but we noticed a change in the beginning when we switched even before the intense therapy and we believe the organic food is helping the process further along.
So I urge you to contact your representatives in Congress and ask them to not support this bill. I fear that there is little opposition to this bill in Congress due to the current numbers, and is being led by the same party in power - and we've heard very little about this bill which they are trying to put through with little fanfare.
Thank you and God Bless
Mike
http://www.govtrack.us/congress/billtext.xpd?bill=h111-875
https://writerep.house.gov/writerep/welcome.shtml
http://www.senate.gov/general/contact_information/senators_cfm.cfm
http://blog.alextiller.com/BlogRetrieve.aspx?BlogID=2729&PostID=58102
http://www.leavemyfoodalone.org/Default.aspx
I've recently heard about a bill in the House (HR875) and Senate (S425) called the Food Safety Modernization Act. As part of this bill, which is supported by the food chemical lobbyists, the use of fertilizers and pesticides will be required to "protect" all food - including organic food. Isn't that the reason many people choose organic food, because it doesn't have fertilizers and pesticides?
When we switched Hayden to organic food - we saw a change in him within weeks. We started getting more sounds and now he is starting to talk. Is it all because of organic - no - his teachers and the hard work Tina put's in is part as well - but we noticed a change in the beginning when we switched even before the intense therapy and we believe the organic food is helping the process further along.
So I urge you to contact your representatives in Congress and ask them to not support this bill. I fear that there is little opposition to this bill in Congress due to the current numbers, and is being led by the same party in power - and we've heard very little about this bill which they are trying to put through with little fanfare.
Thank you and God Bless
Mike
http://www.govtrack.us/congress/billtext.xpd?bill=h111-875
https://writerep.house.gov/writerep/welcome.shtml
http://www.senate.gov/general/contact_information/senators_cfm.cfm
http://blog.alextiller.com/BlogRetrieve.aspx?BlogID=2729&PostID=58102
http://www.leavemyfoodalone.org/Default.aspx
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