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.

Monday, May 22, 2017

Here We Go Again!

One of Coleson's favorite songs to sing and dance to is "That Power" or as he calls it, "Math Power" by Will.I.Am.  He mistakenly sings the refrain, "Here we Go, Here we Go, Here we Go Again", which is kind of how I felt talking to Dr. Walker, the orthopedic surgeon who will be performing 1/2 of Coleson's surgery tomorrow (this procedure takes 2 surgeons working at the same time).  Hopefully this time it will "Go" as planned and we will be on the other side of this in about 24 hrs. from now.  Probably about the same time you all are reading this. 

Sorry this is my first posting since we have arrived but we had a summers worth of fun to pack in before today and that is exactly what we did.  What does that look like you ask... well it entails a whole day each dedicated to our favorite places starting with the Edinborough Indoor Play Park and Gym on Tuesday, 7 hrs. of amusement park fun at Nickelodeon Universe on Wednesday, 5 hrs. at Crayola Experience on Thursday, 5 hrs. of waterpark fun on Friday and a trip to Minnesota's Largest Candy Store and 3 hrs. at Dave and Busters on Saturday. Fortunately or unfortunately, the weather was cold and rainy all last week so we didn't feel like we were missing the outdoors at all.  We are however done with all the indoor fun and would like nothing but sunshine the rest of our stay.  Yesterday I picked up Grandma early in the morning from the airport and we had a much needed day to recoup before we started into this week.

As far as all of his appointments went last week, we had nothing but "stable" news, which is kind of the best you can hope for with Hurler kids.  We started off with our favorite of the bunch, a visit to Dr. Miller at the BMT clinic and then to Pulmonary, Cardiology and lastly Audiology. Both Pulmonary and Cardiology said he is looking really good and Audiology said his hearing tests have improved from last year slightly but still some mild to moderate hearing loss particularly in the right ear.  Of course, all of these clinical visits require a battery of tests, labs, EKGs, Echo, X-rays, vitals, etc. which Coleson hates to do but he handled most of them like a champ.   We still have endocrinology, spine and hands and wrist Dr.s left which will all be post surgery.

So the day has come that I have to break the news to Coleson that we have to go back to the hospital yet again tomorrow but this time there will be "owies".   Sill not sure what I am going to say or when but I am sure I will find the strength somehow.  I don't think there is any better way to do it so that it won't make him sad and scared so it probably doesn't matter what I say but that I just make sure we give him as much love as possible when I do it.  Peyton of course has been a big help at all the Dr.s appointments especially today for the x-rays which took quite a bit of encouraging for him to do.  He did not want to lay down on the table for the hip x-ray as I am sure he associates laying down with surgery. 

So as you read this, I am hoping we will nearly be out of surgery and that I will soon be following this up with good news.  We could still use all your thoughts and prayers and appreciate all of them we have received along our journey thus far.