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.

Sunday, October 6, 2013

T+72 Happy 2nd Birthday (and 72 day re-birthday) Coleson!

Happy Birthday my beautiful baby boy!  You have been through more in your 2 years of life than most in their lifetime.  You have amazing spirit and determination.  I promise to be by your side every day of your life as long you promise to be by mine the rest of my life!

Coleson had the best birthday he could have had.  Not necessarily from a health perspective but from a social perspective.  The Honeywell Minneapolis Law and Contracts team (led by Janna) hosted the RMH dinner Friday night and put on a little birthday party for Coleson complete with an awesome birthday cake and presents for both kids!

I am grateful to at least be in a city with lots of friends near by!  Thanks Laura, Barry, Tim, Jodi, Rebecca, Janna, Debra, Sue and Michelle!  Fittingly, the kids got his and her airplanes along with books and a phone.  

The last week was pretty full.  Just as I feared,  Coleson's congestion and cough returned within days of ending steroids.  He stopped eating so we are back to g-tube feeds and vomiting...  

Sunday we met my friend Nicole and her family at the White Bear Lake Apple Orchard.  We picked pumpkins, went thru a corn maze and on a hay ride thru the orchard,minus the hay.  

Sunday night Telma and Sam stopped by for a quick visit and to drop off some pictures that the kids made for Peyton and Coleson.

Monday I threw out my lower back.   By Tuesday morning it was worse so I went to the Drs.  I swear Paul, Peyton and I have been to the drs. more in the past 4 months than ever..we'll maybe not me.  The dr. Put me on muscle relaxers and it is slowly getting better.  On a side note, after a small adjustment to my pacemaker, it appears that is working just fine.  There was a setting that was limiting my sinus node to beat fast enough to support my running.  

Another Hurler family is here for a couple weeks while their son (6yrs.) is getting knee replacement surgery (I told you this doesn't end with the BMT!).  They have 2 kids with Hurlers, their youngest daughter is 18 months old and is 1 year post transplant.  Since they knew within 2 weeks of birth that she had Hurlers they were able to start her on enzyme right away and she had her BMT at 5months.  boy does it make a big difference!  Not to lessen the hardships she will have in life but hopefully it will prevent her from having as many side effects and surgeries.  Only time will tell.  It seems odd to me that someone who is 6 months younger than Coleson is already celebrating 1 year post BMT.  They are a really nice family and I again appreciate being able to talk with another family..it is so helpful.  Thanks RMH for creating a place where that can happen.

We are within 30 days of going home as long as nothing prevents that from happening.  We are still trying to figure out the logistics.  Coleson hates wearing his mask, though we are trying to use it more and more, so a plane ride seems almost impossible but driving home is too risky for him.  Paul is looking into Angel flights but Peyton would not be able to fly with us.  We'll figure it out cuz winter is coming to Minnesota and I do not want to be here when it hits!  It is a beautiful (but chilly) fall!