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, June 11, 2017

3 Down, 2 to Go!

Weeks until braces off that is... 

At least according to Leo the Ninja Turtle that is.  Leo is our official holder of our countdown chain (an idea from a good friend and Hurler dad, Todd.  Leo was a gift from his friend Eli.  It is a cardboard cutout and stands 6 ft. tall.  He not only makes a good chain holder but also can be used as an anti burglary device as well!  (Think "Home Alone" style).

Coleson seems to be holding up fairly well, both physically and emotionally.  I think his emotions are following a bell curve (can you tell I'm in business) as he is starting to ask more frequently about the number of days.  Not unlike my state of mind when I was running marathons... you start off thinking 1 mile down 25 to go,  a milestone so far off that you don't even want to watch the mile markers... you ask yourself, why am I doing this again?  Then you find your rhythm and you zone out for a while and you think, "I got this... Now I remember why I'm doing this", I feel great like I can do and achieve anything!  Then you hit mile 20 (the "Wall") for some and you again start asking, "Why am I doing this again?".  Self-doubt on being able to finish the last 6 miles sets in, you start to feel pain in various places in your body.  You start rationalizing that you've already run 20+miles and isn't that a big enough accomplishment... no one will know if you walk the rest of the way in...  the miles are counting down quite as quickly as they were before... But before you know it, you look up to see that you are already at mile 25...and you get your adrenaline back... but that last mile.2 feels like the prior all of the previous 25 miles combined.  Somehow the additional .2 feels like so much more.  But alas you cross that finish line and later you can reflect on the entire race and soon enough similar to giving birth without any meds, you think... that wasn't too bad, I can do that again!    I don't think Coleson will ever want to go through this again, but hopefully he will come to the same conclusion that this wasn't so bad and he can accomplish anything!

We are finding ways to get through the days/weeks.  Thankfully we have quite a few friends both work and fellow Hurler families here.  We've been to the RMH a few times for bingo and hanging out with the other Hurler families.  They changed the BMT protocol for Hurler kids a couple of years ago to replace a couple of the harsher chemo drugs in lieu of a couple others that are less invasive on the body.  However it seems like the kids are having a harder time keeping the transplant and many are finding that they have to go through 2 BMTs and other complications.  There is a family from Michigan here right now who adopted their Hurler boy and he is on the brink.  I can't even say (or write) what he is on the brink of because it is too hard.  The mother sent out a FB plea to the birth mother (whoever she is) to connect with her so that perhaps he can receive an immediate donation of a sibling or from her just so he can survive.  They aren't even worried about the Hurler syndrome gene at this point.  It is heartbreaking.    It is families like these that make me grateful for what I have and how relatively speaking, Coleson has run his marathon with relative ease. 

We still have a few more appointments to go, Endocrine, Spine Ortho and Wrist/hand Ortho.  I already know his TSH levels are going up so I think he will need an increase in his thyroid meds.  I hope that we continue to get good news from the other ortho docs as we have in prior years.  Then finally we get the braces off and start physical therapy. 

I am looking forward to going to Prince's Paisley Park in a couple weeks with another Hurler family.  I was a huge Prince fan in Jr. High/High School!  Minnesota has so much to offer!  However today it offered us a hail storm this morning and a possible tornado this afternoon.  I don't mind the storms but don't like the prospect of riding out a tornado in the basement.  Peyton is already preparing what she will take down with her if a watch or warning pops up.  She wants to bring all of her clothes, games, stuffed animals, etc. with her!  I tried to convince her that buying new clothes wouldn't be all bad if we had to.  She wasn't buying it!   She gets so attached, she doesn't want to see anything get "lost". 

Meanwhile today is going to be an indoor day which gives me time to post, organize pictures on my computer and do other things that I never find time to do as we don't get too many "indoor" days in Arizona and even if we do, there are too many other things to do around the house. 

Oh, and today is my sister, Beth's, 40th birthday!  Talk about someone who has run a marathon... well I guess she "wheeled" her way through it.  She has defied the odds... Happy Birthday Beth!  Also, my grandmother turned 102 in May.  Another women who seems to be running a marathon!