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 8, 2014

T+280 40 Weeks - the first and the most recent

40 weeks... The gestation period for humans.  A time in expecting parents life that is riddled with emotions, anxieties and excitement.  I have to admit my first 40 weeks with Coleson were a lot easier than these past 40 weeks.  I was, in my opinion, a pretty relaxed expectant mother with my second pregnancy.  I naively wasn't worried about the baby being OK, we hadn't known the sex of our baby, wanting it to be a surprise. My second pregnancy was much like my first, both were born a little over 1 week early, they were within 1 oz. of each other, Coleson being bigger.  Of course they were very different babies.
This past nine months however have been a different story. I am no longer "naive" about what can happen to innocent children.  Now I am quite aware of the tragedies that can happen to children, either at birth, as toddlers or as adolescents or teenagers.  I see it day in and day out, from living at the Ronald McDonald House or going to the hospital or reading on facebook.  I've seen all kinds of cancers and anemias, babies born severely pre-maturely, kids who need organ transplants who know that for them to live, someone else must die.   "Butterfly" kids (EB) who have to be bandaged day in and day out, meningitis and SIDS survivors and others.  Kids with all kinds of hardware and tubes attached to them keeping them alive.  Bald heads and heads covered with hats or spunky colored wigs.  Wheelchairs and braces supporting them.  Kids who face chemo and radiation, and even isolation. Surgeries, BMTs, Transfusions, therapies and medications.   Kids who survive and some that don't... all equally courageous as they put up the fight for their life.. quite literally.
I wasn't a Facebook fan until this all happened with Coleson and now I find myself swiping through my news feed reading up on all my new special friends looking for something I know I won't find... a miracle.  I swipe with vigor hoping to find a post of a Hurler child who has not had dozens of surgeries, hospital stays, therapies etc.  I wish I had more time to enjoy the everyday posts but right now I'm focused on connecting with all the other Hurler families and learning from them.  As well as keeping up with good lifelong friends we've met along our way.
Speaking of, two of our RMH families who both had been residents of the RMH for  2 years (yes, 2 years) are home or going home soon.  Cash was 5 weeks old when he was found not breathing in his crib and was resuscitated.  He spent 690 days in the hospital before finally returning home just in time for his 2nd birthday.  Another family, here from Saudi Arabia for their eldest daughter's cancer.  Coco and younger sister Nana were Peyton's best friends at the RMH house.  They arrived in the US in January of 2012 and to the RMH in March of 2012.  They have just been given the green light to return home.  Peyton will be sad that they won't be there when we return in July but I am so happy for them.  Now what does that say about the value of a RMH!  I still say it's priceless!  And oh, BTW, both families gave birth to another child during their stay. On a side note, I currently have nearly 20 lbs of soda tabs ready to deliver to the RMH.  Thanks to all for collecting them!  We leave in early July for our trip to Minnesota so please collect and drop off as much as you can before then. We'll be driving so we can actually take them to "our" RMH.

Coleson has had C-Dif for the past couple of weeks so he's back on antibiotics but otherwise his counts remained fairly stable from 2 weeks ago. We are making progress on weaning off some meds.  He is scheduled for surgery on May 20th to remove his hickman line and replace it with a port so he can finally bathe and swim in our pool.  This makes surgery/procedure #6 (although some of his surgeries were multiple procedures in 1 so it's really higher than that).  As always the scariest part for a Hurler kid with a narrow airway is the sedation.
March's Meds
May's Meds
Lastly, MPS Awareness day is May 15th.  I'll blog more about this specifically over the next few days.