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.

Thursday, April 6, 2017

We Have a Date!

For surgery that is...I was both elated and felt my heart sank all at the same time when after 5 months of weekly harassing two different Dr.s offices, I heard the news that Coleson was finally approved for surgery.  Elated as it meant that his skull and spine surgery of last summer was dissipating the syrinx in his spinal cord and anxious as it meant we would soon be leaving for Minneapolis to have the bi-lateral pelvic and femoral surgery (the one he was supposed to have last summer).  The only date that we was available at that point was May 23rd unless we waited to mid-July.  It means leaving 2 weeks earlier than had hoped and missing Coleson’s pre-school graduation but also 2 weeks more of recovery before he starts Kindergarten.  Peyton of course does not mind one bit that we are taking her out of school a week and a half early.  It also means I will be narrowly missing a visit from one of my best friends, Christina.  I am hoping that we have less Minneapolis visits in the future and maybe we can actually take a family trip to California.  Coleson is so excited to go to Minnesota… fortunately for now he associates positive experiences with Minneapolis.  I hope this summer doesn’t change all that.  The hardest part for me as a mom is not the actual surgery itself as that is up to Dr.s and higher powers, and all of you help get me through the day, but it is telling him that he has to have surgery and what the recovery entails… cast, braces, pain, etc.  Harder this year than last as he has “grown up” so much this past year and is just so much more “aware”.  Of course, I won’t tell him until probably the day or two before and won’t go into all of the details but I need to prepare him that he will be in a wheelchair for a while.  Fortunately, Peyton does know and they have discovered a new iPad game called Roblox which has a game that takes place in a hospital and you can have your characters play doctors and patients and get casts and be in wheelchairs.  She is such a good big sister and is teaching him that it’s OK to have surgery and be in a wheelchair through this game.  Sometime you have to appreciate technology!  Speaking of how grown up my kids are getting, Coleson still loves to sing but has matured his play list from Twinkle Twinkle and Wheels on the Bus to more a more eclectic collection.  He loves to sing and dance to “Just Dance” videos on YouTube.   From boy bands, (“Best Song Ever”) to classics and 80s like (YMCA, Final Countdown) to Pop like Katy Perry (Dark Horse), to Black Eyed Peas (“I’ve got the Power”).  However, I think our theme song this year is “Fight Song” by Rachel Platten.  He really belts out this one. 

You might have noticed that this is my first blog entry in a while.  Life has been just so “normal” for the past few months which has been a welcome relief.   Let me see if I can recap the past 6 months:


I continue to develop my career at Honeywell.  My team is constantly growing in size as a result of organizational changes.  My team is over 40 employees now and I continue to expand my responsibility into more processes.  As the saying goes, the one constant is change and I can attest to that!  I have been getting back into running but have no ambitions to run marathons again.  I also do Zumba and Pound at the gym.  We have gotten more involved with local organizations like HopeKids AZ which is a non-profit that provides free fun events for families with kids with terminal diagnosis.   As there are only a handful of other MPS families in the family, we have really appreciated being a part of a bigger organization and are enjoying meeting other families who are going through similar experiences.  

Paul also continues to expand his career at Honeywell.  He was promoted last summer and now is responsible for a global team which means he is back to traveling overseas.  His most recent stress reliever is refurbishing his ’72 Corvette.  I can’t remember when he first started this project but our garage was starting to bulge out with 3 cars and an entire car’s worth of parts.  Fortunately he made great progress and many parts are back into the car including the wheels and engine and in fact the entire car is at the paint shop getting its original Bryer blue paint. 


Peyton is still doing well in school, although she would prefer to stay home and play all day.  She continues to enjoy gymnastics and also added violin, acting and drawing classes this year.  She dropped dance as ballet was not her style.  She is much more a contemporary and hip hop dancer and gets lots of practice alongside Coleson with the Just Dance videos.  She also spends probably too much time on her iPad mostly playing Minecraft or Roblox and watching YouTube.  She also can’t seem to walk without doing a cartwheel, a summer salt or some other parkour type of move.  She is older than her years and continues to be best big sister with the biggest heart.  She loves all animals, literally won’t even let me swat flies, and wants to be a pet sitter when she grows up.  I’m thinking this is more of a teenage job for her instead!  I definitely don’t think she will follow in our footsteps into the business world.  She is such a free spirit and has a knack for the stage and an audience so she may go in a completely different direction! 


As mentioned, this was a big year for Coleson as far as just “growing”.  He still swims like a fish and even dives down to collect items off the pool floor.  He still enjoys gymnastics and KTR (a parkour type of gym).  He is graduating pre-school after 3 years of the same school/teacher and transitioning to Kindergarten at Peyton’s school.  This will be a big transition for him.  I have been having the regular IEP meetings with the school and he actually is scoring in the average range for almost all of the disciplines.  In fact the only service he will be getting next year is speech and I think this is mostly due to the fact that he hasn’t had his upper 4 teeth since he was 2!  Hard to say “Fs” and “S”s with a window in your mouth.  Of course, we don’t know what to expect his recovery to be like after surgery and we may have to add on Physical Therapy for a while.  He wants to be a doctor, a firefighter or a construction worker.  I think he could also be a baker as he and Peyton both love to bake!  Cupcakes are their specialty.  


We have added a new addition to the family this year, our Yorkie Terrier mix, Bella.  She is a rescue pup who was rescued from a kill shelter in Texas.  She is the most people loving pup but a bit protective of us around other dogs.  I am taking her to training so we can train her to be more mindful and give her more appropriate puppy social skills.  Everyone that interacts with her agrees she is the just the best puppy.  We really did luck out with her.  


We have had a change with our nanny situation.  Rachel graduated and took a full time job in an old care facility.  Fortunately she works afternoons/evenings so she is still able to come in the mornings and help get the kids off to school.  I don’t know what we’ll do next year when hopefully she gets a job on the management side of a care facility and probably will work more “regular” hours.  We did find a college student, Jaclyn who has been coming in the afternoons.  She has been a fun (youthful) addition to the family. 


Will continue to update as we start our travels.  Thoughts and prayers are appreciated.