Monday, May 16, 2011

Lessons from a crazy momma...

Happy Monday Morning to all our of cast friends.  We are hoping everyone had a fabulous weekend full of family togetherness.  As Spring turned to summer and then back to spring in the course of a week, it started me longing for all things normal this weekend.  William was faced with his first hot weather as last week began.  We were able to break out the new summer jon jon outfits beautifully constructed by "his sue" or Aunt Sue as the rest of us lovingly call her.  I can't thank my Aunt Sue enough.  They are beautifully constructed and cover just enough of him to keep him from running around in his cast alone.  I think with this new summer wardrobe, we will actually survive the heat of the summer sure to come. 
        I am dreading so much of the summer.  The heat keeps us hostage to our home.  With this being the first summer I have ever had to spend with my kids I guess I was just hoping for a little more normal.  We will try new things this summer to allow him enough outside play time as we can without putting him in harms way from the heat of Indiana summer days.  I am looking into purchasing a water table for a little morning water play.  So many of our friends have used these with great success.  We are also going to plan a couple fun field trips with friends to keep his spirit active.  Museums will be a big part of our weekly plans.  Indoors, yet fun that's going to be the theme.  I found out Mothers day weekend, the local home improvement superstore, Menard's, has constructed a play area that is covered with a giant awning.  Although outdoors, I believe it will give us enough cover to where he can play at a playground and stay out of the summer sun.  It's all about working the angles.  Keeping our hopes high that we can work around the obstacles and find the much sought after enjoyment so many have with their kids. 
         Our first family vacation in four years will come in July.  I originally had planned for William to come our of cast the night before we leave and go back in cast the Monday after we return from Florida.  The thought of 9 days out of cast with our fabulous family at the beach is what is keeping us all afloat these days.  Unfortunately the scheduler at our hospital had other plans.  She told us he won't be getting casted the week we return, but she would try to work him in the following week.  I at first panicked.  That will put William out of cast for two plus weeks.  We debated taking him to the beach and coming out of cast while we are down there, but no offence that isn't fair to him or us.  Book a house directly on a giant sandbox and the biggest water table in North America and say you can look but not touch.  That sucks for not only William, but all of our family who is traveling with us.  We instead have decided after close to two years of casting, he is getting a break.  He deserves it and so do we.  Now to just turn our heads off to whether his spine is drifting in the time frame is going to be the hard part.  But for now I am counting down the days. 
          We were reminded this week, no matter how many casts you have under your belt, there is still room to learn.  William has had a very tough time with cast #8.  He hasn't slept a full night since it was put on.  He kept waking several hours into slumber screaming that he hurt.  We knew this cast was tighter than his last, but by now he really should have adjusted and adapted to the change.  Wednesday morning, it finally came to light when he said his arms were gone and then started screaming they hurt.  His cast was so high under his arms it was hitting both the nerve and artery while he slept causing the arm to fall asleep and then causing pain as it regained circulation.  A friend of ours in town is the CFO of a local Ortho group and told us to bring him in.  They were able to trim close to a 1/2 inch off one side and 1/4 inch off the other.  He has rested peacefully since this.  I feel horrible, I never thought to check under the arms.  That is one area we have never had to trim before.  I will know next time that Robert and I will have to add that to our argument for cast day. 
            As a final thought before I sign out for today, I want to tell you about the wonderful families in our club.  Kaity has made an amazing recovery from her surgery this Thursday.  After only 2 1/2 days she was allowed to return home with her family to finish her recovery.  She is still trying to find her full stride post surgery, but is amazing us all with her tenacity.  Please keep Kaity and her family in your thoughts.  The Lucky Cast Club grew over the weekend adding 3 wonderful new families.  Gianna and her little love Iljana & Celeste and her little beauty Chloe have been casting in Chicago for some time.  We are all overjoyed to have new members in our Chicago family.  Our third new family joined us from Kansas City Children's Mercy.  Lesa and her little sweetheart Krissy are joining us in her first cast.  We pray they are also adjusting to this new cast life.  Exciting news came last week with Massi and Taylor's cast day in Chicago.  Massi is holding at 11 out of cast.  He is well on his way to leaving cast life behind and moving on to new adventures with bracing.  Our final update is on our sweet Cadence.  Cadence is all goes well will be casting in Greenville Shriner's Wednesday.    He sweet momma is just 7 weeks from delivering a new bundle of joy and is having many hiccups in her travel/casting plans at a new hospital.  I am sending huge hugs and prayers that someone at Greenville Shriner's will step up and take this worry from them.  They need Cadence to get a early cast time so the family will be able to catch their flight home.  Keep Cadence and Angelica in your prayers for tomorrow and Wednesday. 
          I have learned these past couple of weeks to hope again as Jackson and Massi are ready to chart new courses in their treatment and continue to blaze new trails to where we all hope to be.  I have also learned that although you know the routine, their is nothing routine with casting.  And lastly, I have learned no matter what your fears are with time out of cast, somethings are bigger then this process.  If you have a chance to make a memory even if it means coming out of cast for a little longer then planned, grasp it, hold it and cherish the moment.  On a journey with no clear map, you have to take the moments when they come along! 

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