Saturday, February 27, 2010

Ups and Downs and in between

So this week has had ups and downs.  William is up and moving.  He is bouncing back and settling into his new cast.  He was happy and laughing again which is something we worry about for the first week of each cast.  These are all ups.  There are down sides to Progressive Infantile Scoliosis as well.  I have been smacked in the face this week with the fact that although I have tried to be super mom, I am failing Cody so much.  He has been craving attention from me.  He has spent the week sleeping on our love seat in our bedroom because he is "sick".  It took my sister, his teacher, to point this out to me.  William requires constant care and although I have tried to give as much attention to my precious Cody Man, it has fallen short.  I wonder how other parents deal with this.  I think sometimes you try to be all things to all people and with that you worry about others seeing your faults.  I am not super mom, super wife or super friend.  I am flawed and failing in so many aspects of this. 
       Another little battle that has shown it's ugly head this week is my battle with Midwest Radiological Imaging.  When we were seeking evaluation from specialists we got copies of Wills xrays from Midwest, our local radiolgy group.  We viewed his films for the first time before our trip to Indianapolis.  I kept saying oh my goodness look at the crazy curve in his spine. Then I looked at the date on the film....the crazy curve in his spine was from June of 2009.  This was 4.5 months prior to his xray that was read as scoliosis.  His October x-ray with the same group was taken stretched out on the table and read as 28 degrees.  A week later in Chicago he had an x-ray taken sitting upright and it was read as 67 degrees. We asked our surgeon why the difference and were told the correct method for diagnosing scoliosis is standing or sitting.  When you lie flat it is not natural and skews the results.  Ok so now we have the answer to why the October x-ray was wrong, but it still doesn't explain why his June x-ray with a very obvious defect was read as "no obvious abnormality".  This delayed his treatment and could possibly lead him to Vepter Rods before he is 4.  Ok so now I need to get to the point and off my rant...when William had his MRI prior to casting, we had to have his scan completed in Evansville.  We were instructed to fedex his scan to Chicago Shriners as soon as we finished.  They read the results there and casted William for the first time 3 days later.  We told the hospital what we were doing and requested his films not be read.  We have paid the hospital the insane amount of money they charged for his MRI on all 12 inches of his spine, then we received a bill for the read of that MRI.  I paid for 2 incorrect reads already and I am standing my ground on not paying for this one.  I am not sueing for malpractive although they claim non was committed. They have put it through one review and friday I insisted it go back for a second review.  There is principle involved in all this. 
        Ok to sum up this week, William is great(minus fever and vomitting from 15 month shots) oh yeah didn't mention any of that, Cody is pretending to be sick because I have been a poor mother, and although we have paid several thousand dollars to the hospital for an MRI I am refusing to pay a few hundred for the read.  It's a crazy life, but someone has to live it!  Hoping next week I am back to my chipper self. lol

Sunday, February 21, 2010

Week one New Cast

Week one of our new cast is down and William is bouncing back.  He is moving with the help of his push toys, climbing on chairs and furniture, and watching Elmo at an alarming rate.  He is still very whiny and we are having up/down issues.  This cast seems heavier and wider on the top.  This makes it very hard for him to get off his back like a turtle overturned and he has trouble getting down once he is up.  He is overcoming and will work hard to master these everyday tasks. 
      On a brighter note, he has transitioned to the toddler room at school.  He will get to eat lunch at a little table and chairs, take the stairs to play in the gym, and nap on a cot instead of his crib.  What a big boy.  They let him take his nap in the toddler room last week and said he kept crawling to his friends cot to take his nap.  They put him back on his mat and patted his back until he finally gave in and went to sleep.  We got him an Elmo blanket for his nap time this weekend.  Hopefully that will make nap time easier. 
      Thursday night we christened the new cast with a round of stomach flu....also courtesy of the toddler room.  The first round was the worst.  We were able to disinfect the cast quickly and put him in a bib for the next four rounds.  The smell seemed to linger about a day or so, but we are smooth sailing for now.  Febreeze the baby was one thought we had!  Just kidding of course!  Hope you all have a great week.  We will update later!

Monday, February 15, 2010

Cast #2 Down

We just returned home from Chicago Shriners.  I am in awe of the strength of our little William.  He showed such determination going in and coming out of anesthesia.  The numbers were promising today.  He stayed at 47 out of cast which showed 20 degrees of correction from Cast 1 to cast # 2.  Our goal is less than 10 degrees out of cast and 20 degrees correction is such a good start.  He cried for a shorter period of time after anesthesia which is very promising.  Go Iron Will!  10 weeks and counting until our next break.  Stay strong little buddy! 

Sunday, February 14, 2010

Bye Bye Bath

We finished our last bath this morning and waved Bye bye to the bath water.  Tub chair put away for the next 3 months.  Splish Splash and a clean baby emerges.  It is funny how time flys when you are having fun!  We are packing and I am going into clinical mode.  It is all about numbers at this point.  67 down to 20 the first time.  Let's see where he stayed out of cast.  What will the new number be?  The number game is a blessing and a curse, but the numbers are what count.  Any correction is good correction, I just keep telling myself that.  Keep the prayers coming. 

The Chicago Travelors,
Chad, Catie, Cody, William and Grandma

Thursday, February 11, 2010

Cast #2

Cast day for number 2 begins Monday February 15th at 6 a.m.  We are enjoying the last few days of freedom with family and friends at the Big Splash Adventure waterpark in French Lick Friday and Saturday and then beginning the journey to Chicago Sunday morning.  We are apprehensive about the new cast.  We have watched a precosious toddler emerge in the two weeks of freedom.  Climbing, bathing, laughing and playing as a carefree 14 month old should.  The journey may be long for little William but the end result will be nothing short of miraculous.  To stave off surgery for a a few years would be heavenly or a lifetime divine.  We are learning strength from our little one and in every milestone he reaches I am reminded of the great works of our Lord.  God Bless our little William, Bless his little friends, and bless the skilled hands of his doctors and nurses.  Your work is divine and your blessing plentiful.  Let him sleep for when he wakes he will move mountains.  I believe there are big plans for William. 

Thank you!

We want to thank our friends at Northwestern Mutual Financial Network and River Bend Dental Group for donating so generously to our first Chicago Shriner's Hospital toy drive. All care provided at Shriners Hospitals are no fee to the patients and their families. Each child is given a special stuffed toy prior to their surgeries/procedures and travel home with a new age appropriate toy. This is EVERY time they are in which for us will be 5 times this year. The care is second to none as these hospitals recruit the best and brightest in their profession. You have helped us give back and we are forever thankful. We will be planning several mini fundraisers this year with proceeds benefitting Shriners Hospital. Stay posted for more information on how you can continue your support!

Friday, February 5, 2010

William's Story

William is now 14 months old.  He was diagnosed with Infantile Scoliosis October 2009 at 10 months old.  William started his life very normal.  At about 3 months old we noticed he had trouble keeping his neck straight.  We consulted our pediatrician and he was diagnosed with Torticollis.  He started working with a therapist to lengthen the shortened muscle in his neck.  At 6 months old we noticed a pretty profound bulgin of his ribs and what we thought was thickening muscles in his back near his shoulder.  William had a cervical x-ray when he was diagnosed with Torticollis so we asked his pediatrician if his x-ray showed anything abnormal.  The radioligist report showed "no obvious abnormality".  Our pediatrician told us all was fine, that the muscles were probably positional from the torticollis.  We continued to work with his therapist with more concern for his back and ribs, but we trust our pediatrician and didn't want to question.  At 9 months with many months of therapy we were still having concerns with his torticollis.  We had First Steps of Indiana called in to evaluate him for developemental delays such as crawling, walking, etc... During his evaluation the therapist asked if we had a x-ray of his spine.  We said yes with no abnormailities.  She said we should have a new one because his spine disappears under his muscle.  We called the pediatrician and had one retaken.  The new read was possible positional error, 28 degree curve may be present.  We went to a surgeon in Indianapolis who said yes it's scoliosis, but will self correct.  They advised us to wait 4 months and retake his film.  We chose not to wait and went immediately to Chicago Shriners who use derotational casting to correct infanitle scoliosis.  He retook the film and said both the original and new film show a 67 degree curve.  Also he said his original film from 6 months ago also showed a significant curve.  We were dumb founded.  How could this have happened, 2 films misread by the radioligist in our hometown and the specialist in Indy.  William was casted a week later in Chicago by Dr. Peter Sturm, Chief of Staff, Chicago Shriners Hospital.  He was corrected in cast to 20 degrees.  We are now out of cast for 10 days awaiting cast #2.  Wait and see could have led him to immediate spinal surgery or halo traction therapy.  Thank God for Chicago Shriners and our friend who led us there!  Thank you to our sponsor who supported our journey!  Stay posted for more updates and more lucky kids stories.  Please know not all endings are happy and we are no where near the end of this story.  We are at the beginning of this journey and I hope to show the good and the bad on this blog!  Follow along, share your own story and pass the word.  Early treatment is the key to the best outcomes, but all outcomes that help children are worth reading.