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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.

Thursday, May 23, 2013

4th ERT and 2nd ER visit this week

Today is Coleson's 4th ERT.  He is sleeping soundly now.   He actually slept all night again last night.. that makes it 3 whole nights since his ERT started.  He must have known though that Peyton was going to wake up at 3 AM coughing and crawling into bed with us.  C'est La Vie! 

This week also marked our second trip to the ER.  We actually went a full week without a dressing change over his central line which was good.  However, when we did change it, it was still actively bleeding.  It should have clotted by now and that is somewhat concerning.  Also, he broke out in a rash that looked like Hives.  Unfortunately when you have a sick child, everything requires an ER visit.  We can't even go to urgent care (and we have a brand new one that opened up right across the street).  So we packed it up on Tuesday and headed to PCH ER.  Fortunately there was no one in line so we got right into a room.  I thought it would be a "short' visit however they wanted to take X-rays to ensure his line was still in place.  After 5 hrs, we went home with just the advice to keep an eye on both.  I guess that is a good thing.  His rash has mostly gone away but his central line is still bleeding.  We are waiting for the surgeon to come take another look at it which means we'll need to change the dressing again.  His poor skin is so tender (and sticky) from all the dressing changes. 

Other than that he seems to be doing well with the treatments.  He has gained 1 1/2 lbs since our trip to Minnesota which I take as a good sign.  He is more energetic than ever and displaying typical "boy" like behavior. 

We are still waiting on word that they have confirmed the Bone Marrow Donor.  As of early last week they had found 2 possible matches (8 for 8 choromozones) who had provided blood for the next round of testing.  One female and one male.  It's weird to think he will have someone else's DNA in just a few short months and am thankful already for these 2 individuals to be so selfless.

I also have been in contact with a few other Hurler Mothers over the past week.  Of course they are 1000s of miles and timezones away as there are very few of us that exist.  Regardless we share an instant bond and I appreciate greatly their words of encouragement and advice.

Peyton continues to crack us up.  This week she's added to her vocabularly with, "Down the Hatch", and "That's Interesting"  and she started crossing her legs like a lady when she sits.  She is only 3, right?! 

Well, my boy is waking so it's time to wonder the halls and flirt with the nurses (him not me)!