Sunday, September 29, 2013

BEACH TRIP - September 28th

Photo: McKinley making her sand angels on the beach!  She was a very happy little girl!

McKinley got to go to the beach!!    We finally got the cast off and were able to spend some time at the beach.  The only thing Scoot wanted to do was jump over waves and make "sand angels."   And that's just what she, her brother, & sister did for over 3 hours!   I'm sure she would have stayed longer, but it was getting chilly.  I loved watching her be a kid again, and being able to enjoy what she likes best, (Besides dressing up and playing princess)!    No worries about sand in the cast or getting the cast wet - it is a great feeling!!  

We are preparing for cast # 6 on Wednesday.   And while I pray for some great news (even the slightest change) I can't help but prepare for the worst as I sit again and hear Doctor M say the words "future surgery."   I find comfort in God and remind myself that he will bring us through this journey.  And am trying my best to trust in HIS plan.  I don't know what I would do without McKinley's faith and strength, either.   She shows a true testimony of faith as she says "God will make my back better."   With those blue eyes and that pretty smile, who couldn't find comfort?     

"If you have faith as small as a mustard seed, you will know God can move mountains." 
Matthew 17:20     

Please continue to pray for McKinley, our family, and her doctors.

Monday, August 26, 2013

August 26, 2013 - Still No Changes

Not much has changed since my last post.   McKinley is currently in cast #6.  The curve is not progressing, which is a great thing.  But no improvement either.  :-(   Dr. Mendenlow is still preparing us for the future surgery, definitely not what we want to hear.  We still have faith that we will get a miracle.    McKinley had a great summer, even though we were only allowed water for a few days.  She had a 1 week break between cast #5 and #6.   Luckily, it fell around her birthday so we were able to have swim party for her turning FIVE!   We also took a day trip to the beach (McKinley's favorite place).   And we spent the other days at Carowinds Water Park.  I made sure she had a water activity every day!

McKinley started 5K last week, like any parent I am not ready to let her go. But with her in a cast it was a little harder.  She is at a great school with some awesome teachers, school nurse, and staff.  They were very helpful and active in completing a 504 plan for her. This plan provides McKinley with the "extras" that she may need while in school.   Such as allowing for more potty and rest breaks, being able to sit in a chair instead of the floor if she feels more comfortable.  It also lets everyone who is working with McKinley know why she is wearing a cast and what limitations she has like (NO WATER!)  Which means being extremely careful in Art class when they are painting ... its the little things that are so easily overlooked.  She has just finished day 3 of school and she LOVES it!  There have been no issues with her cast.  However, if we can get her talking under control, we will really be doing well!   Haha!!    

Cast #7 is scheduled for October 2nd.  Hard to believe we have been traveling this new road now for a year!   The curve was discovered on August 2, 2012 and our first specialist appointment at Shriner's Hospital was in September.   Time if flying!!!  And through it all, she impresses me everyday of what a strong and brave girl she is!   Her faith is still strong as well, she tells us often that "God is going to make her back all better!" 

Thursday, April 4, 2013

In Cast #3

It has been a while since my last post, it has been  extremely busy around here!!   McKinley is currently in cast #3.   We will take it off May 1st ... a little over 3 weeks and counting down!!   There has been no progress in her upper curve.  Her doctor is getting correction while she is in her cast, but outside of the cast her curve is staying between 78-85 degrees.   Her lower curve has shown some improvement!   The doctor is telling us we are looking at surgery around 8-9 years old, unless her back starts improving.  We are still hopeful that a miracle can happen!  There is also new medical techniques that are being implemented that will hopefully be approved by FDA by the time we are facing surgery.    

Thankfully, the actual procedure is getting better for her.   She only gives us a fight when its time to take the versed, she has never liked medicine.   On our next visit Logan is going to be able to go back in the OR room with her and help give her the "gas".   We will see if skipping the medicine part will make it easier on her?   We will try anything!    The staff at Shriner's Hospital are wonderful ... they focus on making the child & family comfortable and aren't resistant in trying different techniques with each child.  

These are some images from McKinley after she came back from the OR.  We are on our way downstairs to the casting room where they wrap her cast.   I am so proud of her for riding in the wagon this time & not flipping out with the ladies downstairs (some things are getting better for her).  But as you can tell she is heartbroken & ready to go home!

This is her as soon as we got back from the casting room ... playing in the playroom.  And once we got back to Rock Hill - Sweet Frogs  it was!!   

What a busy day, but still have time for 1 picture before bedtime!  She wanted a "gold" cast, but there was not yellow wrapping.  So we decided on a rainbow colored cast ... perfect for Easter & Spring!!    

Thursday, December 6, 2012

McKinley's Very First Casting & Diagnosis

McKinley's First Casting: November 28, 2012 

It was a very emotional day.  And it all started as soon as we entered the hospital hallway.  McKinley was determined she was not going to let the nurse take her temperature, blood pressure or check or oxygen.  After about 15 minutes of bribery and getting to choose a build-a-bear she finally gave in to the temperature & oxygen check.  However, we still had to force her to check her blood pressure :(   The entire time she kept crying and saying that "I do NOT want my cast!" and "I want to go home!"    She didn't know, that more then anything I just wanted to take her home too.

The time finally came and we were taken upstairs to the OR prep room.  She gagged, spit out, and had a complete break down when it was time to take the versed.  She was not very happy about putting on her "cast shirt" either.  The cast shirt is like a white tank top that stays on under the cast to help protect her skin.    After getting prepared for surgery she was able to pick out another toy from a VERY large wagon full of all types of toys .... her pick A Unicorn Jewelry box that you decorate.  Then it came time to put her on the bed so they could take her back to the OR. She began crying and screaming as soon as her daddy put her on the bed.  I just wanted to hold onto her as they rolled her away crying.

Logan & I joined the family downstairs and played with the Parker & Greenlei as we patiently waited for the 1.5 hour procedure to complete.   When they called our name over the intercom we quickly went back to the nurse station who escorted us back up to the OR floor, where we waited to speak with the doctor.   So many emotions were in that room while waiting on him.  We were anxious, nervous, scared, and of course hopeful he would give us some great news that our little girl was going to be okay.   {READ HER DIAGNOSIS BELOW}

After we talked with the doctor we waited downstairs for about 30 minutes until she got out of recovery.  We heard her screaming as soon as she came out of the elevator :(    She was extremely upset and wanted her IV OUT and her cast OFF!  "Please take it off, please?!" and "I just want to go home!" is all she kept crying.   She wanted up out of the bed and she let her maw-maw hold her.  We finally got the nurses to take the IV out which calmed her down a little bit for her to fall asleep in her maw-maw's arms.   Poor girl was jerking in her sleep because she was that distraught over the cast.  I just wanted to rip the cast off and say we can go home.   It was very heartbreaking for everyone to see her go through this.

We carried her down to the casting room where she was woken up and began screaming and crying all over again.  The casting room is where they trim the cast if needed, wrap it in "mole skin" (a soft foam like material to cover the hard edges of the cast) and then wrap it in her color choice.  Luckily the cast did not have to be trimmed so that saved us a little bit of time and fighting.   She also received a wrapped present from the casting room.

When we returned to her room upstairs we were quickly discharged.   However, McKinley wanted the cast off before we went home.  She refused to put clothes on as we went to the car.  We finally convinced her to get in the car seat and we would put a gown on her after we got home (of course she thinks we can take the cast off first?). McKinley rode home from Greenville in just her cast and pull up.   We cushioned her in with pillows to try to make her comfortable on the 2 hour ride home, where she eventually went to sleep.

I was able to get a picture of the cast while she slept.  This is before we went to the cast room and got it wrapped.  There is a hole in the stomach area to allow it to breath and a small hole in the upper back.  The white shirt stays on underneath  to help protect her skin some.  

Doctor Medenlow's Diagnosis: 

First we were assured that she was doing good and in recovery.  And that she didn't put up that much of a fight when they got her back to the OR ... as she quickly went to sleep so they could insert IV and begin procedure.

He then told us he took an x-ray of her back while she was laying down and found that her 70 degree curve was actually 76 degrees.  He explained that this error easily occurs when an x-ray is taken of the child standing up.  He also discovered she has developed an additional curve in the lower part of her back of 49 degrees.  Which is caused by her first curve at the top of her back.  After he applied her fiberglass cast he took another x-ray of her back.  He was able to get her top curve to 50 degrees in cast and the bottom curve to 10 degrees.   {Please note: this does not mean her spine is better, it just means that is what it is corrected to while in the cast, when the cast is removed her spine will more then likely be curved at the same 76 and 49 degree curve.}   

He proceeded to tell us that he is not very hopeful this casting procedure is actually going to work on "curing" her back, but he does have hope that it will prolong future back surgery.   Her upper curve is so high, the cast does not actually hold it completely.  And she is 4 years old, meaning her spine does not grow as fast as it does in the first 3 years of life.   Which means the slower the spinal growth - the slower the correction.  He is pretty certain she will face surgery around 8-9 years old ... we however are still praying for a miracle!

And then he answered our questions & probably some of yours too? :

"When can she remove the cast?"  - McKinley will wear the first cast for 6 weeks, but with each cast she will gradually increase to wearing the casts 8-12 weeks at one time.  We can remove the cast 3-5 days before her second cast which is scheduled for January 9th.   We can remove her cast at home with a pair of garden shears between January 4th -January 6th ... counting down the days now! :)    

"What if the curve gets worse?"  - It's not likely that her curves will get worse, but it is likely it will stay the same.   We will not really know if the cast is actually helping her back until at least 1 year of casting.  In McKinley's situation he will take more x-rays then normal to monitor the curves.

"What happens after a year?" - After the year they will re-evaluate her curves and we will hopefully continue casting.  Hoping we can push off surgery as long as we can.

"Why cast if surgery is inevitable?"  -  The risk and failure rate for her to have surgery at such a young age is 100%.  We can't put her at risk, if the casting is slowing her curves down or hold them where they are now for a few more years.

"Does she get a break in the summer?"  - More then likely not.  If her curves are making improvements, we would just slow the process down by taking her completely out of a cast for 2 months.  There is a possibility of bracing for summer, but really depends on her progress.

Monday, November 26, 2012

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.  

Friday, November 23, 2012

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.