Friday, April 23, 2010

New Friends

There are two new members to the Chicago and Cast Club Group.  The first is sweet Adelyn.   Adelyn is a sweet 7 month old little angel from Evansville suprisingly enough.  The more ironic part is that Adelyns mom is William's case worker with First Steps of Indiana.  She is in Chicago right now for her first appointment. She will be casted June 10th for the first time.  That will give us all a little time to get her prepared for this new cast world. 
     Our other new friends are Giana, a 3 year old little joy from the Chicago area.  Giana has congenital scoliosis and was casted in Chicago earlier this week.  Her sweet mom has been through so much and without the support many of us had from fellow parents until after this cast.  What a brave family!  Welcome to our new sweet friends! 
       I am so thankful for my Chicago Cast family as well as my wonderful friends from hospitals in St. Louis, Salt Lake City, & Portland.  This process has built a large family of support and comraderie.  What brave little people there are in this group!  Keep our new friends in your thoughts.  The beginning is so unknown and scary.  All the instructions in the world can't prepare you for what will happen.  They will thankfully have the full support of our tight group of Lucky cast parents. 

When we first started this process we felt so alone.  Then a kind word of encouragement turned into lifelong friendships.  There are some in this group who are nearing the finish line of this journey, others of us are taking detours, some are just beginning the race and then there are those of us who are not sure of where we are.  The one thing I can say is thankfully I have my friends to join me for the journey!  Love to all.

Stay Tuned for Next weeks post....Splish Splash he is taking a bath!  Countdown begins! 

Friday, April 16, 2010


The "Why" game is a game we all play on this road.  Why does my child have this condition, how did it get missed for so long, why didn't the pediatrician see it sooner.  I did this as well as bargaining, looking for different options, and questioning everything.  At some point peace set in though.  Peace that I can't change the past and can only confront what is in front of me.  Peace that although my pediatrician might have missed the signs earlier, he won't miss it again.  Peace that my surgeon has my childs best interest at heart in his treatment decisions.  Peace that we know what it is now and will not have to face that worry again.  I don't think William was hand picked for this condition by God.  I think it is too cruel to think God causes these things to happen.  I think it just happens sometimes.  So the question comes how do you stay in this peaceful mindset when the panic starts to creep up at each cast change. 
           Ok so the last question brings me to our current position in casting.  We are 2 weeks out from cast #3.  I secretly always hoped we would be the lucky percentage that resolved in a few casts although the numbers were always stacked against us.  Chad and I have noticed William starting to stand and walk tilted as he did prior to his first cast.   I am not sure what this means, but Chad looked at me this morning and said are you prepared if the numbers are not good this time.  I said Yes of course, but something hit the pit of my stomach.  I am not sure you are ever prepared for that set back.  We are however prepared to stay the course.  We will cast as long as casting is an option.  The window for postive results is so small, we want to take advantage of every minute of it!  Cast life is not ideal and we are finding the summer is going to be a challenge to say the least.  Cotton, plaster, and fiberglass are not exactly cooling, but the alternatives for kids not ready for bracing is surgery and I am not willing to put William on that path without exhausting our cast options. 
           We are charged with protecting our children.  We were given them to keep safe and show them love.  Scoliosis hasn't taken that from me.  We still have hugs, laughs, and smiles.  We still have tantrums and tears and all the things that come with being 16 months old.  I am in control of his future....or at least that is what I keep telling myself.   

Thursday, April 8, 2010

Tiny Blessings

This is Drueman!  He is my friend Christina's little guy who is William's age and started casting in St. Louis the same time as our little man.  He went yesterday for cast #3 and they found Drue was at 13 degrees and the doctor chose to put Drue in a brace for now rather than re-cast.  Drue did it!  He went from 40-13 degrees in 2 casts.  He gets a much needed reprieve for the summer.  Little Drue and his precious mommy give us hope.  Hope that casting can work.  Hope that William can achieve the mark as well.  Our journey will be a little longer, but my friend will have the answers when we make it!  YAY DRUEMAN!  Splash away this summer for William!  Swim, bath, and be as carefree as a 17mo can be.  Run and climb for you now have endless room to spread your precious wings.  Someone read my last post....You sent him prayers and you sent us hope!  Keep straight thoughts in your prayers for Drue.  Keep him at 13 or resolve it entirely.  We all deserve a little light in this tunnel!  Hugs to Drue, Hugs to Christina and Jimmy(Mom and Dad), hugs to Tryston and Grace( big brother and sister)!