First Cast

We are heading to Greenville today for McKinley's pre-op appointment to have her cast put on Wednesday.  Here are a few pictures of her back.  Before cast #1.  I snapped this after bath tonight, which explains her wet hair :)  

As you can see, her right shoulder blade is elevated.  Her curve at this point is 70 degrees.  

This is her shoulder blade as she is touching her toes.  

Another look from the front.  Her right shoulder is higher then the left.  

How We Got Here ...

McKinley ... 4 years old

This blog is about McKinley's life with scoliosis.  I am hoping it is an easy way for family & friends to "stay in the loop" with everything going on with her, as well as to educate those who are not really sure what scoliosis is or how it really can effect a family.  Please feel free to ask any questions, share this blog with others you think it will benefit, or to leave comments & of course encouragement.   I know our life is going to be completely changed as we are to find a new "norm" for our family, but with each day or with each cast it should get a little easier.  Thank all of you in advance for all of your thoughts and prayers, it's a great feeling to know that we have a such a strong support system!



August 2, 2012

I took McKinley to her pediatrician for her 4 year old well visit.  I had no concerns about her health or development and figured besides her 4 year old shots, it would be a pretty quick visit.  During the visit, Dr. Super had asked McKinley to touch her toes, so she could examine her back that's when I heard the Doctor ask "Is she touching her toes completely?"  I knew right then something was wrong and noticed a huge hump in her right shoulder blade.  We went that Saturday to have an x-ray taken of her spine and a few days later it was confirmed that McKinley has scoliosis. The hospital confirmed she had a 33 degree curve in her spine.  No parent wants to hear that anything is wrong with their child especially when it comes to your 4 year old's spine.   Immediately you start thinking the worse and a thousand questions come to your mind.   "How is this going to change McKinley?," "Will she still be our active, sassy little girl?,"  "What exactly is scoliosis and how bad is it?," "How are we going to afford treatment and specialist?"   ... the list goes on.

Through my younger sister and my photography business, I had developed a relationship with Walt & Nancy Greene.   Walt is a Shriner and they asked if they could sponsor McKinley, so she could get care at the Shriner's Hospital for Children In Greenville.   We completed the application and found out quickly that McKinley had been accepted.  Her first visit was set for September 13, 2012.   Words cannot express how grateful we are for Walt & Nancy ... I truly believe God puts everyone in your life for a reason!  

Word of advice for all you parents:  make sure you know not only your family health history, but know your child's other parent's family health history as well.   I was asked several times, if this condition ran in the family.  My response "No, I don't think so."   Little did I know I was wrong.  My husband was not aware that his grandmother has scoliosis.  She contacted me a few days after finding out McKinley's results that she developed scoliosis as a child.   So, now I am of course thinking "Maybe if we had known, we could have caught this before now?"   But of course the world is not educated for things like scoliosis as we are cancer and other diseases.  So, how would I have known that scoliosis is genetic and should be something to look at in our daughter and other children?  

September 13, 2012

We anxiously awaited McKinley's first visit to Shriner's hospital and today was the day!   I think we all were a little nervous to find out more about McKinley's condition, but also ready to set a treatment plan and get our princess better.  We had an additional x-ray taken at the hospital, and McKinley was a pro ... she kept her listening ears on and actually posed for the technicians!!  :-)   McKinley did great for the doctors and assistants and did everything she was asked to do. Though she didn't want to wear the gown they gave her, but after we turned it around backwards she was good to go!  Doctor Mendelow came in to give us the results of her x-ray and they had found she actually has a 70 degree curve in her spine.  I was in shock to find out that the previous hospital was so far off in there reading.  He explained that the technicians there did not start reading the curve at the correct vertebrae and that is why their reading was far off.   I can still remember myself being in a daze as he was explaining our possible options and that our next step was to schedule and MRI for McKinley's back & brain.   As I am still praying "please God no surgery."  I couldn't imagine my 4 year old going through spine surgery!  Not that I would be 100% on board with that option anyway.  As we left the hospital that day I continued to make a list of  "What" questions, knowing that we must leave it in God's hands, but a mama always worries.   We were sent home that afternoon to wait on a phone call the next day to schedule her MRI.

SIDE NOTE:   The Shriner's Hospital for Children in Greenville, is absolutely awesome!  We and most importantly McKinley had a great visit.  Everyone was very friendly & caring to us and McKinley.  They all took their time to explain the subject and answer our many, many questions. The nurses and doctors didn't come in and out of the room quickly, but instead treated us like we were their only patient.   Not only can I brag on the staff, but the environment of the hospital was very kid friendly, not only to the patient but the patient's siblings.  All the kids could play on computers, read books, and even play on their outdoor playground.  The babies loved playing on it while McKinley was in x-ray or talking to the doctor.


October 1, 2012

MRI day .... a day we were all dreading.  It was absolutely horrible.  Unfortunately Shriner's patients are sent to Greenville Memorial Hospitals for MRI's.   I hate to say it, but the staff we had that morning were not like any of the staff members at Shriner's.  McKinley fought the nitris, so we just had to hold her down and insert the IV.  The most heartbreaking day ever!  I know most 4 year old's will fight any type of shot, but McKinley has to be one of the worst when it comes to shots, needles or anything of the sort.  I mean it took 3 of us to hold her down at her 4 year old shots in August :(    If you really know McKinley, you know that she speaks what's on her mind, no matter what.  And if she is against something she's going to let you know it, in more ways then one!  Anyway .... after she was sedated they put her on the MRI table and now we had nothing to do but wait for the test to be over and our little girl to wake up.  Since they were checking her back and spine, the test took over 1.5 hours.  After an hour I was just ready to have her back in my arms.   When she woke up, she of course was still groggy and not the happiest.  But we survived it.  I will never allow her to put through that again. She will be given some type of liquid anesthesia first, before they attempt an IV.

Two days later we were heading back to Greenville to get the test results.  The test showed that her spinal cord and brain are great.  And there was no link between her scoliosis with anything else.  Which meant that instead of surgery right away, McKinley could be treated with a back MEHTA cast.  Dr. Mendelow thinks that with her spine showing a significant curve, that McKinley has probably been developing this since birth.  However, it was not noticeable to the human eye until now.  He told us that this casting will not cure her of this, but it should slow down the curve progression so that surgery can be delayed until she is older.   Of course I had a notebook with two pages of questions about the MEHTA casts, the actual procedure, and McKinley's life after the cast!  I was actually relieved in a sense, that Dr. Mendelow is going to at least try casting.  McKinley's curve is past the casting range, and should go straight for surgery.  Once you start researching all of this on the web, you can drive yourself crazy with how much more information you actually need to know before your child starts a procedure like this.

Her treatment plan is to go something like this:
6-8 weeks in cast
1-2 weeks removed from cast
6-8 weeks in another cast

This treatment plan is to last up to 2 years.  They will then re-evaluate her and see if the curve is improving or getting worse.  Of course they will change treatment if they see changes sooner.  They try not to expose the children to more radiation through x-rays then are needed.  So now we wait until November 28th for her very first CAST.

These pictures were taken of us on the hospital's playground after we were given her test results.  Enjoying some just "McKinley time" before heading home to get her brother & sister.