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, April 20, 2016

The Countdown Begins (30 days & counting)

30 days until we leave for Minneapolis and 34 before Coleson has his surgery (May 24th).  Coleson will be having 4 surgeries in 1, double pelvic and double femur osteotomies.  The pelvic osteotomy is to correct a “shallow” socket that if left uncorrected will eventually lead to the femur “ball” slipping out of socket.  The femur osteotomy is to correct the alignment of his femurs into his hip socket.  Two surgeons will operate on him at the same time and the surgery is expected to last ~6 hrs.   It is a high risk surgery and one that all of us hurler parents dread, though almost all hurler kids have to have it done.  It is high risk as they are cutting into the femur (which is where bone marrow originates) and so there is potential for lots of blood loss.  In addition, there is potential for nerve damage due to the length of the surgery and the short necks and spinal curves our kids.  Needless to say, I will need all of your thoughts and prayers that day (May 24th) as it is an excruciating wait.  Feel free to send texts/facebook posts/emails, etc. that day as it will be a good distraction from staring at the clock.  He is expected to be in a spica cast for at least 4 weeks and then we start physical therapy and rehab.  We are planning to stay in Minneapolis for the summer just in case anything goes wrong  and to ensure he is well on his way to recovery as well as go to all the other annual appts.  So Minnesota friends, we'll be in touch.  I hope to get to the office there a few times as well. 


Otherwise we have been enjoying the winter/spring here in Arizona relatively healthy.  Coleson has been battling chronic ear infections for the past 2 months.  We went to a new ENT and he suctioned out the blockage in his ear tubes.  Hurler kids tend to have thicker ear secretions and the antibiotic drops weren’t able to penetrate through it to clear up the infection.  Coleson didn’t like the suctioning at all but I could tell a noticeable difference in his behavior afterward.  He is a happy go-lucky kid in general but he was even more spirited afterward.  The ENT did plant that seed that we may need to look at removing his adenoids.  I am not in favor of having any unnecessary surgeries so hoping this won’t be necessary.  Peyton too has been fairly healthy with the exception of a cold/ear infection that happened to occur when my sister and niece were visiting.  I haven’t had any major ailments lately myself (knock on wood) however Paul came down with a serious case of bronchitis a couple weeks ago.   He was in bed for several days and we even took a trip to the ER.  by habit I almost drove to Phoenix Children's hospital.  It's been a long time since I've had to go to an adult ER!  He is still recuperating but is expected to feel the effects for another couple weeks.  Had a bit of a scare last week when Rachel called me from the park to say that Peyton fell off the monkey bars and wasn’t moving.  Luckily I had just taking a CPR and first aid class and was able to run through the checklist to assess the situation.  Fortunately she was breathing, just needed to calm down, and she didn’t have a concussion, but did have a sore back for a day or two. 


We have been enjoying the warm weather, plenty of pool time, gymnastics and dance.  I took Peyton on her first hike with some good friends and after our second hike, I think she has had enough.  Just not exciting enough for her… she takes after me, I’d rather be on a bike on a mountain rather than my legs.  Speaking of bikes, Peyton is proud of her newest accomplishment, riding her bike without training wheels.  She didn’t like riding it much with the training wheels so it didn’t get a lot of use. One day she got on a neighbor's smaller bike without training wheels and figured out she could do it. So we took them off her big bike and away she went!  The bike gets a lot of use now.  She has even rode it to school a couple times.  Coleson continues to be a climber, climbing anything and everything including the pantry and his closet to pick out his shirt for the day.  He is particular in what he likes/doesn’t like and that includes what he wants to wear.   We took the kids to a place with warp walls and trampolines and he did great!  He even somehow got up on the big warp wall (perhaps someone helped him).  He escaped the "6 and under" area without me knowing and when I couldn’t find him, my eyes raced around the gym and spotted him way up at the top of the big walls.  I really hope this surgery doesn’t set him back too far.   He is so adventurous and agile, it’s hard for me to think in just 1 month, he will be in a cast and wheelchair. 


I’ve been trying to stay as healthy as possible with my eating and my workouts. I’m been trying to get to Yoga or Zumba 4-5 times a week.  Paul can “handle” the kids now at night on his own so it allows me to get to the gym.  It’s amazing how much better I feel and how much more energy I have.  The kids have starting waking up earlier than usual (not sure why) and fortunately I’ve been able to adapt.  It’s amazing how much more I can accomplish with an extra hr. in the morning. 

Lastly, I took 66 lbs. of pop tabs to recycling this weekend for the RMH.  This is in addition to the nearly 100lbs from last fall.  The RMH will certainly appreciate this donation.  If anyone else has any pop tabs, please let me know. 

I'll probably be publishing some frequent updates for the summer as we tackle this next journey.  Thanks for reading!    Here are some recent pics and videos.