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.

Wednesday, August 17, 2016

Back to Reality

We are back to Arizona and back to “normalcy” (whatever that means)!  Things didn’t go as planned this summer but I think they went as God intended.  We ended up having a really good summer (minus the few hospital days) packed full of friends, family and fun.  In fact, so much fun that the kids were completely bored returning to the 115 degree weather here in Arizona.   They are constantly asking to go to, “more fun places” and “what friends are we going to see next”?  I knew we were spoiling them but knowing what next summer is going to be like, I wanted to make sure that Coleson especially looks forward to going to back to the “blue house”.   


The kids are back to school, Peyton in 1st and Coleson in Pre-K.  Coleson loves to go to school while Peyton tolerates it.   The song, “Girls Just Wanna Have Fun” was written for her.  She can play hard all day long but going to school for 7 hrs. is not much fun (except for recess/lunch times).  I try to remember what I was like at her age and life was very different for me at age 6.  It always is from generation to generation but at the age of 6 my mother had been gone for 2 years and my dad had just met Aggie. I can tell you my life was not about going to “the next fun place”.   Both kids have decided to focus on gymnastics this year and rock climbing for Peyton.  Peyton and I were watching the Olympic Gymnastics and swimming events and I asked her if she thought she could do that one day.  True to her big heart she said, “If I were beating someone, I would stop to help them so we could both win”.   She is going to be the best kind of friend.  With her big heart though comes big sadness when saying goodbye to friends and family or getting her heart hurt easily and I dread her teenage drama years. 


Coleson has rebounded from surgery and is becoming just as dare devilish as Peyton.  He wants to go on roller coasters and water slides, he’s flipping into the pool.  This makes me more nervous because he doesn’t understand his limitations yet...which is good in some ways but not so good in other ways.  He makes me nervous for Kindergarten when he is with a bigger population of kids.   He is enjoying gymnastics and school and is doing quite well in both.   We have a few appts. coming up, his repeat sedated MRI to see if his surgery was successful and if he will be approved for next year’s surgery as well as ENT.  We can never get a good audiogram on him since his ears are constantly draining from his tubes.  I know the ENT wants to remove his adenoids but I am really trying to prevent another surgery.  I’m hoping as he gets bigger the drainage will reduce in his ears.  He went through a bout of ear infections before we left for Minneapolis but now they just drain occasionally.   Otherwise all of his other appts. went well.  Cardiology said she wouldn’t even have known that his heart was a “Hurler heart”, and pulmonary went well too.  Ophthalmology said his eyes are holding steady with a slight near-sidedness, retinal atrophy and astigmatism, but as long as they are stable he is doing well.  He is still 100% engrafted with donor cells at 3 years out and I expect will remain unchanged.  He is developing at a more age appropriate level in almost all areas but is still behind in gross motor skills (the test doesn't ask about flipping into pools!) so we need to continue with therapies.  They also mentioned we need to work on his attention span and focus so it doesn’t start to impact his schooling.  His spine looks great with only a 17% kyphosis in his lower back and his neck still looked really good (minus the cyst in his spinal cord).  All in all, we received very positive results in almost all areas.  Most Dr.s said they did not need to see him again next year which is good because it is going to take all we have to make it through the pelvic and femur surgeries and I don't want any additional stress on him. 

I turned 1 year older this summer and got to celebrate it three times, 1x in MN, 1x in MI and 1x in AZ.  I think it's official now!  Paul has resumed working on his corvette and parts are actually starting to go back into the car as opposed to out.  Soon tires will be put back on and it will sent out for nice new paint job. 


As mentioned, we had a great summer full of friends, family and fun in both Minneapolis and in Michigan.  I appreciate and thank all of you who came to visit, had us over, took us out, let us store stuff, just had fun with us.  We didn’t get to see everyone we intended to see as we still have to work while we are there.  We really missed seeing some of our other BMT family that we typically get to see but we did get to spend some time with some other Hurler families this year and that was nice too.  


We are about to kick off the busy Fall season full of holidays and birthdays.. more fun times filled with friends and family.  Thanks for being part of our journey.