Friday, March 26, 2010


I find this week with hope and sadness.  We have our next cast date May10th.  I always become a complete crazy women when the new cast date is set.  How many kids are on that date?  Where are we in the mix?  What will his numbers be?  When are we going up?  Will we bring Cody?  It runs the gammit of crazy for me.  I usually start to think about taking the cast off.  What date will we do it?  Is that date to early or to late.  I am telling you my mania kicks in high gear.  I am trying to control it this time.  I also start thinking about the process.  We are only 3 casts into this after this cast and God know we are a long way from the home stretch. 
      I wanted to take a little time in this post to let you into the cast lives of our friends as well.  Max will be getting his last cast before the summer.  He has fought over a year in cast and needs a break.  Please pray that Max will have a nice summer break with no regression in his curve.  Makenna and Jackson started this journey with us.  Jackson will be casted in April a few weeks prior to us and Makenna will be starting cast number 3 on May 10th with us.  Pray for good correction for both these precious little ones.  Grace is finishing her cast journey and is having problems with her bladder now.  My friend Jane has been through the ringer.  Grace started with surgeries for Hemi and then casting, and now when she sees the finish line she is faced with this new hurtle to jump.  Keep Jane and Grace in your prayers.  Dylan and his family are facing the surgery hurtle.  Where will they decide to have the surgery?  Will they stay at Salt Lake City or have it done in Canada which is home.  Pray for Dylan and his family.  They need strength in making this new leap in the Scoiliosis journey.  Kiera is heading for a new cast.  She has had a uphill battle trying to balance curve and rotation.  Prayers for Kiera.  Drueman is Williams age and started casting at the same time.  He will go for his check and cast #3.  Prayers for Christina and Drueman.  I recently read the Caring Bridge for a four year old little guy who just had Dual Rod surgery after his casting failed.  He is having such a tough time with pain during this process and they are having problems stabilizing his BP with all the combinations of pain med they are trying.  Pray for Matson and his family.  Sealy's daughter, age 9, recently went for X-rays only to find that they believe the doctor is not being a 100% truthful on numbers.  Sealy is facing the fact that a year has been lost in brace allowing her beautiful girl to progressively get worse while in treatment.  Pray for Sealy and her gorgeous girl.  There are 1000's of other little ones out there who are struggling with new hurtles in this journey.  Please send prayers for all of those out there who are in this process. 
      My heart is heavy with dread for these little ones and opens my eyes to what might lie ahead for William.  But for the grace of God goes I.  I can't get that out of my head this week.  But for the grace of God goes any of us on this journey.  Casting is a best practice.  It is not a guarentee.  I have been told by so many "at least he doesn't have cancer or heart problems".  Yes for that I am thankful.  I will have to say this journey can't be compared to anything like that though.  I can't put myself in those shoes other than to know the helplessness many parents must feel.  Infantile Scoliosis is a lifetime of worry.  If casting works, you have braces and constant monitoring.  If the casting isn't a cure then you face surgery that will last a lifetime.  Either path leads to a lifetime of worry.  We try to make our current life the new normal, but I even see in my rock of a husband crumble at times...especially when he talks about our out of cast week.  This is the heaven to our journey.  You hug and squeeze your soft toddler for 7 days and pretend the armor will not return.  Then you take the 6 hour drive to Chicago and sit with your loved ones and talk about anything but what will happen in the morning.  You pretend...and when the morning does come you go into stoic mode and start the process again. 
            Lift these little ones up to a higher power this week.  If prayer is not your thing, then send them hope.  Everyone has hope it is what gets us through the day.  Love you all my family and friends! 

Hold my hand and I will hold yours. Squeeze it tight and I will protect you my little one!

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