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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.

Tuesday, April 15, 2014

T+266 Caught Offguard

"I'm sorry for calling your son a monkey" came the apology from the 10 yr. old girl.  Coleson and I were at McDonalds yesterday while Peyton was at gymnastics.  He hasn't been able to go many places beside children's hospitals and other places were looking different is the norm so I was caught off guard by the apology.  I hadn't heard the girl call him that, but I had witnessed the mother call her down from the play structure and talk to her just minutes before.  I hadn't paid attention to their exchange but then realized the mother must of overheard the kids or at least her daughter making fun of Coleson and made her apologize for it.   I hadn't practiced responses to such interactions.  I have coached Peyton through situations when she is curious about some one else's "owies" and had responded to others when they were inquisitive about Coleson but had not prepared a response for an apology for rude comments.  I fought back tears as I accepted her apology.  I know he must look a bit odd with all his hair and his unusual facial features but I only see a beautiful boy when I look at him and so I guess I was a bit naive to how he looks to others.  The girl went back to playing and I cringed at the lost opportunity to explain why he looked different.  As we were leaving another little girl (probably 5 or 6) asked why he looked so weird and I was able to tell her that he had been sick and the medication made his hair grow but that it was OK to look different.  Her Grandma patted her head and added that she also had unique characteristics since she was a red head.

I know this wasn't the first time he was made fun and certainly won't be the last, and I'm sure I will get used to it, but it took me by surprise for sure.  I won't let another opportunity escape where I can address the reason why he looks different.  Kuddos to the mother and grandmother who addressed the situations as they did.  I know there will be times where mothers won't reacted in the same educational/informative way.

On a happier note, Coleson's BMT doctor reduced some more meds and took him off 1 more as well as changed our appts. to bi-weekly instead of weekly.  I was starting to worry about his hemoglobin level last week as it was steadily marching down week after week and last Monday was at 10.1 (he needs to be at least at 11.5 to be in normal range).  However, all of his counts including his Hemoglobin (10.8) and electrolyte numbers were up this week.  He also had an echo last Thursday and though we do not have the official results, I'm thinking that if there still any concerns with the pericardial effusion that we would have heard by now.  We also talked about his Hickman line removal/port placement around Mid-May.  I'm looking forward to the reduction in hospital trips though I know they need to be replaced with other appts. now.

I also got to see 2 of my BMT mother friend's (Debbie and Kathy) last weekend.  It was nice to be in the company of people who just "know".  Though our kid's illnesses are different, we have the common bond of the BMT and going through such a life altering experience.

I'm hoping too as we round out this year that my focus will be able to shift from Coleson's immediate needs to doing more fundraising/awareness, etc.  I will soon start to utilize some of the other "pages" of this blog that I intentions of doing from the start.  It's amazing what we've been able to do for the MPS society and Ronald McDonald houses in at least 4 different states already without a real focus so I'm excited to start giving back and helping others that come after us!