T+331 One Year Ago we arrived in Minneapolis

One year ago today, we arrived in Minneapolis after a 28hr, 1820 mile car ride with stops in Albuquerque, Colorado Springs, Peyton Co., (a special stop just for Peyton) and  Lincoln, NE.  We had no idea what the next 5 months would have in store for us nor did we know if we would be returning with both kids, but we were certain that the bone marrow transplant was Coleson's best chance to extend his life and help stop the progression of his very awful disease. 

A lot has happened since my last post, and this delay in posts means I am simply too busy having fun with my family (not to mention being really busy at work).  The most important event was Coleson's hickman removal and his port placement in mid-may.  This allows him to be submerged in water again and he has thoroughly enjoyed baths and swimming.  Not to mention so has Peyton!  We have been swimming practically every day!  Peyton has been showing him how to swim and even agreed to put on her "hippo" (lifejacket) to show Coleson how he can swim on his own.  He much prefers holding on to mom though!  I think the "hippo" stretches out his shoulders more than he is comfortable with.  He has limited range of motion from the disease.  However, in just a few weeks he has learned to swim (rather jump) from the steps to me standing a couple feet away (underwater of course).  I most enjoy not having to do dressing changes.  I hated how much it hurt him. 


I always hate to send my baby off to surgery(it never gets easier), but he was all smiles and giggles before they took him back and this always helps. 



Peyton has been missing going to school but did go to School camp and Gymnastics camp to help bide her time.  She also started swim lessons.  As mentioned before, she is a little mermaid when it comes to swimming and she could stay in the pool all day long but she needs to learn all actual strokes and kicks.  She is more interested in going down the big slides after swim lessons are over.  Have I mentioned how fearless she is!  She looks like Paul but she is my daughter! 

 

We also have been busy having play dates with friends and I now can take both kids.  There have been too many to mention but some of the favs over the past month have been the butterfly museum, playing with 10 new pups, and most recently seeing Peter Pan The Musical. 

Tinkerbelle and mommy!

Peyton teaching Coleson how to drive

I finally took Coleson to get his glasses.  Both kids had fun trying on glasses but now that the lenses are prescription strength, he doesn't like them as much.  He much prefers Daddy's aviator sunglasses!   I couldn't get a pic of him fast enough but he is adorable!
By the way, Coleson's hair is getting really curly and long, though thinning out from its thickest point.  I have been tempted to get it cut but want to wait until after we return from his 1 year visit in Minnesota.   Meanwhile the body hair is slowly thinning out as well.  Can't wait until this all goes away!




Lastly, we helped serve dinner at the Ronal McDonald House @ Phoenix Children's hospital this past weekend.  A neighbor organized the dinner in Coleson's honor, Thanks Teresa.  We had lots of food and volunteers. I'm looking forward to serving dinner at the RMH Minneapolis when we are there in July!