Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Friday, May 22, 2015

Graduations and Celebrations

Not sure any actually made it into his mouth!
Well we pulled off the big surprise by showing up unexpectedly to schools and homes last weekend.  My Grandma looked great for any age, much less 100.  It was a short weekend but packed full of fun, so much so that Peyton with that huge heart of hers, did not want to leave her cousins!  The first time that she was in tears leaving.   It was fortunate (and just coincidental) that my niece Katie was "too sick" to go to school on Friday and when she showed up at Grandma's house in the morning to find us eating breakfast her jaw hit the floor.  She wasn't too sick to spend the day playing with Peyton and Coleson though and so we went to Mooville for some ice cream.  Then we showed up at the High School to surprise my oldest sister and my other niece.  Jaw dropping must run in the family because they both had the same reaction.  Then we headed over my nephew's school to surprise my other sister and the boys.  They didn't necessarily have the same reaction (they are boys and play it a bit cooler) but none the less were happy to see Peyton and Coleson.  All my nieces and nephews are so good with my kids.   They spent the evening schooling Paul at basketball and playing on their scooters.  We also surprised my grandma at her place on Friday as Saturday we predicted would be a bit overwhelming. 
Looking Great at 100!
Saturday was spent playing on the farm and Aunt Lorin's house until Party time.  Lots of people showed up Hope Landing to celebrate both 100 birthdays.  I don't think age is a topic they talk about much at Hope Landing so there were quite a few residents who were equally surprised by the special day.  Saturday night was another basketball schooling and family fun.  Sunday was short as we had to leave for the airport at 11:00. 

Grandma Great and her Greats!

And the with the Grands!

Cool in Daddy's Shades!
Did someone say Cake?!

Coleson's last day of his first year of Pre-school was this week.  Since there are kids moving on to Kindergarten next year they had a graduation and all the kids regardless of age/grade got to attend.  I didn't use to be such a softy but I had tears in my eyes as they played the traditional graduation song and he accepted his diploma!  Which he immediately tore.  Peyton's last day of pre-school was last Thursday.  They didn't have graduation but I too felt sad that she was leaving such a great school, Day Spring, and will be heading off to Kindergarten in the public school system next year.  When we went to enroll her last week, she said she was very nervous about going to her new school.  If I have to be honest, so am I!  Looking forward to the 3 day weekend. 

Coleson's story was featured on the ABC 15 website this past week to promote Be The Match Donor Registry.  http://www.abc15.com/news/be-the-match/blood-transplant-was-phoenix-3-year-olds-only-hope .  I also attended a lecture from a Neuropsychologist sponsored by Genzyme, the company that distributes the Drug (Aldurazyme) that Coleson is infused with weekly.  I got to meet another MPS I mother that I have only emailed with until now.  Her son has the adolescent onset form of the disease and an adult women who has the adult onset form of the disease.  It was good to connect with others in the valley (there are so few of us) that are living with disease.    Well, that was our week!  Hope you all enjoy or enjoyed your holiday weekend.

Wednesday, May 6, 2015

Birthdays, Donor and MPS Awareness Day

Birthdays - Some big ones coming up.  First would have been my Dad's 75th on May 8th.  The year of "firsts" is always hard and this will be no exception.    I made this for Dad when I was in 5th grade.  There were typically school projects for "Mother's Day" and it was convenient that my Dad's Birthday was always the same weekend so I could modify the projects for my Dad's Birthday. (My dad and Aggie didn't marry until I was in 7th grade).  It's hard to read but it say's,
 I Love You Because...

Family Leader
A nice guy
Tough and Always Working
Hoping we will be right
Eager to get the job done
Really interested in what we do

I might not have been a poet at 10 years old but it was pretty accurate.  Still don't believe that he is not here with us to celebrate this milestone birthday....
Speaking of which, my Grandma is turning 100 on May 19th.  We are flying home to surprise her.  It's about the only thing a 100 year old would want on her birthday.  Aggie and my Dad threw her a big party last year just in case she didn't make it to 100.  We never expected it was because my dad wouldn't make it.  My Grandpa's Birthday is on May 9th, though he has been gone for 21 years now.  I think Grandma is really looking forward to the day that they can celebrate their May birthday's together again. And to be honest I hope they are together for it next year.  Not because I don't want my Grandmother here but when you have lost everyone in your immediate family, and you're 100, the days must tick by so slowly. 

On April 1st, almost exactly 2 years after we received Coleson's Diagnosis (April 2nd, 2013), I received his marrow Donor's contact information.  It was the day I had been waiting for since July 24th, 2013.  I was finally able to thank the man who gave my son a new opportunity at life.  His name is Jacob and he's from Wisconsin.  Coincidentally, Coleson's middle name is J.  Just "J."  Originally it was for John (my Dad) and Joyce (Paul's mom) but I can't help but think there was another reason for naming him just "J."  He seems to be a good guy (being a donor take's a special person) with a lovely family full of boys(3). He responded back to me that he felt a special connection as one of his own is Coleson's age.  I hope to thank him in person some day.   

International MPS Awareness Day is on May 15.  Wear purple to spread awareness and help make a difference in the life of a child with MPS or related disease! If anyone is interested in Donating to the National MPS Society, to help find a cure for my son and others with this illness, here is the link:  http://mpssociety.org/

We are making our annual summer trip plans including our week long tour of the Twin Cities Children's Hospitals.  I think we have to go to 4 different ones to see all of his specialists. He may have his heart surgery while we are there and hopefully we will hear that he will not require any other surgeries in the short term. We are also excited to help host the 2nd annual RMH dinner with the help of my Minneapolis based coworkers! On July 24th again as luck would have it!

We held a Kentucky Derby/Fight Night celebration at the Ranch over the weekend.  My dad's truck proved to be one of the more entertaining "toys" to play on.  I think my Dad would be happy that it is bringing so much joy to my husband and my kids! (Which in turn, makes me happy).

 Another bit of bright news in April was that I received a promotion at work.  My new title is Director of Contracts Technical Solutions!  I am so thankful to work for such a great company and a great function and a great team.  I need to finish building out my staff but then hope that to make some significant and exciting achievements.