Thursday, November 9, 2017

Shriners

Today we had our first appointment with the Orthopedic surgeon.  We have only been waiting 2 months for this appointment, so Tim and I were both prepared with questions and ideas.  First they took x-rays of Kinley again.  Shriners has a low does x-ray machine that was so neat!  Thank you to those donors that made that machine happen!

 At the end of August, Kinley had a curve that was measuring 38 degrees.  Today it measured 44 degrees.  There is always a 5 degree difference taken into account based on position, the person reading the x-ray, and what not.  So, her curve has gotten worse over this little bit of time.


The thing we were not prepared for was the curve is atypical.  Being that Kinley is our child, we should have assumed this would not be a typical scoliosis case.  Her spine is just curved, not twisted.  There is usually some rotation of the whole spine, and Kinley is not showing that right now.  With those findings, we need to rule out other causes before we treat the scoliosis.  So, Kinley needs to have an MRI done to check for spinal cord tethering, Chiari II Malformation, etc.  Because of her age, we will need to sedate her.  And getting that appointment is going to take a few weeks. 
If everything checks out on the MRI and there is not an underlying cause, then we will discuss treating the scoliosis.  We are talking casting, bracing, or surgery.  And also how we are going to go about doing physical therapy. 



Not sure what we are hoping for here.  None of the outcomes seem better then another.  One thing I do know for sure is Kinley is one tough little girl.  She is ready to take on whatever is coming her way. 

 Love the name tag Addison was given.  And this appointment was obviously exhausting. 
         

Sunday, October 22, 2017

Upside Down


This is what Kinley looks like much of the time.  Standing on her head!  It cracks me up and drive me nuts much of the time.  I am a lot more tolerant of it these days however.  I keep imagining her in a brace around her little body 20+ hours a day, and I am ok with letting her jump around and stand in all sorts of positions.  
I love this girl more then I could ever begin to write down.  And this diagnosis has hit me hard!  I am frantically trying to find a "fix" and I keep coming up empty handed.  I feel like I am finally getting somewhere with my research.  I have found a local family who has a little girl with Scoliosis.  They have been dealing with this for 4 years now.  I met with the mom yesterday and tried to get out all my questions and worries in the short hour and half we talked.  Most of the time was spent sitting in a coffee shop with a person I had just met, crying from both of us, as we were sharing our stories and concerns.  This Mom is a great resource for me, and I am so very thankful to have met her.  She gave me some good direction, and I feel like I am going to rock that first appointment with the orthopedic surgeon. :) 
Kinley still doesn't know something is wrong.  I am hoping to keep her in the dark until our appointment.  Once she hears the word Scoliosis, she will never be able to forget it.  So, enjoy these last few weeks with out scoliosis in your life little one.  Your Mommy is working so very hard to find the best treatment for you.  I love you so very, very much Kinley Grace.  I am right by your side through this journey, and I will never stop being your biggest advocate!

Friday, September 22, 2017

Touching the Toes

Kinley loves gymnastics.  Like LOVES it!  And she is so very good at it.  They call her muscles in the gym because her arms are ripped and the strength she has is amazing.  I have been debating telling her coach about the scoliosis.  But since we have yet to see a doctor, I decided to just wait.  Well, this week after practice, there were two coaches waiting for me as we were leaving the building.  I could tell they had some apprehension as to what they were about to tell me.  They started out with saying "Have you heard of Scolio.." at which point I cut them off.  Yes, yes I have heard of it.  I explained to them that we were already aware of Kinley and her curvy back.  The relief on their faces when they realized that this was not my first time hearing it about Kinley was great.  I kind of shut them down pretty fast since Kinley was standing there and is still in the dark about what is going on.  But, thank you coaches for putting yourself in an uncomfortable place to try to help this little girl out.  Early detection is key, and I appreciate anyone looking out for my little one.
When we got home after gymnastics, Kinley was so pleased to show me her new trick.  "Look Mom, I can touch my toes.  I can touch them so good that Coach Holly took me around to show all the other coaches how good I can do it."  Oh sweet baby, yes, yes you can do that so good!  I'm so thankful she thought they were gawking at her sweet toe touching skills instead of her twisted back.
Today Kinley woke up and complained of her back hurting when she bent forward.  This is the first she has ever said about pain.  And she pointed right to the correct spot on her back.  My heart broke for her once again at that moment.  I wake up every day in pain.  And the fact that this might be the reality for my daughter....Ugh, I don't know how to process that.
Shriners is not able to see Kinley until the beginning of November.  We put her on the cancellation list, so hopefully something comes from that.  In the mean time, I am doing research like crazy and looking at places that can provide a second, third, fourth, and so on opinion.
You got this Kinley.  Mommy is right here, standing by you and willing to do anything to help you in the coming months and years.  XOXOXO    



Monday, August 28, 2017

The Blog is Back!

 Well Hello there!  Its been awhile!  The blog has taken a bit of a rest this past year and a half because really, our lives have been pretty normal.  I love keeping a blog so the kids will be able to grow up and be able to look back on their lives and know what little turkeys they were.  The reality of it is our lives have been kind of uneventful in the kid department.  When I first started the blog, it was to keep in touch with family that lived so far away while I was pregnant with Carter.  I would update it with weekly pictures of my belly and sneak some cute ones of Kenai in there every now and then.  Then after Carter was born, it became an excellent way to keep everyone updated on his health issues. It was a way for me to type out my feelings about his struggles and accomplishments.  It was also a way for me to give updates after doctors appointments and not have to call or text multiple different people all day long.  Which brings me to the reason behind starting up the blog again.  And this time its not about Carters health.  That little guy has been doing awesome besides having to have 8 teeth pulled in the OR last December.
Today's blog is about Kinley.  Sweet Kinley is about to start Kindergarten and could not be more excited.  This little girl is an absolute joy in our lives.  She is funny, smart, and will always tell you the truth whether you want to hear it or not.  A few weeks ago, Tim and I noticed that she might have a slight curve to her spine.  Its something I try to keep an eye out for in our kids since I have scoliosis and I know it can be genetic.  So, I brought it up at her 5th year check up.  The doctor ordered an x-ray to see what was going on. As soon as I saw her x-ray pop up on the machine, I knew our suspicions had been correct.  Kinley actually has a 38 degree curve right now.  Which is pretty big for someone so tiny.  We have been referred to the Shriners hospital near by and are waiting to hear from them.  They will sit down and look at Kinleys chart before they call to set up an appointment.  This way they know if she needs an urgent appointment or if this can be put off for awhile.  I'm hoping they will call and say its no big deal and we can carry on with our lives as normal.  Unfortunately, that will more then likely not be the case.
So for now, we wait.  If you are the praying type, we would love for you to say a few extra prayers for Kinley.  And if you are not the praying type, now is a good time to start!  Both Carter and Kinley will be starting at a new school this year.  We decided to take the kids and put them in a school that was smaller and would hopefully be a better fit for their personalities.  I had a few reservations about making this change.  I can tell you know without a doubt I am so very thankful we went for it.  I know that at this new school if Kinley is struggling, the school will be there to support her.  If there are any kids that are mean to her, it will not be tolerated.  Kinley will thrive no matter what the situation.
I will update the blog when we have some answers.  Or when I just need an outlet to vent my feelings.  I have been taking this news pretty hard.  We have yet to tell Kinley about it simply because we don't really have any answers for her.  And at the tender age of 5, that is hard to comprehend.
Our motto right now: Bent not Broken            




Tuesday, June 14, 2016

4 Years


Dear Kinley,
Today was the big 4!  I can't believe you have been blessing our family for 4 years already.  I call you the mama bear right now because you love to keep everyone in line.  You want to make sure everyone is doing as they are told.  You love to carry around your dolls and dress them up and rock them to sleep.  If I ask you to get Addison dressed, you are right on it!  Within a few minutes I will hear Addison screaming at the top of her lungs, but you will continue trying to shove her wiggly body into her clothes.
This year in preschool Ms.Wendy would call you the teachers helper because you were always wanting to help out your friends with the answers.  You have been begging me for months now to do gymnastics, so about 6 weeks ago I enrolled you into your first class.  And, it has been so wonderful to see you progress. Your teacher has commented on how buff you are and how well you are catching on for just starting.  I too am so impressed.  Your little body is pure muscle.  You say when you grow up you want to be a gymnastics girl.  If you are not eating your veggies on your plate, we just have to tell you that it will make you strong like a gymnast, and you will gobble it down.
For your cake this year you requested a chocolate cake, with chocolate icing, and a pink princess on top. You also added that you didn't want it to spin like Elias' cake because you wanted me to be able to make it!  I tried my best to pull off just what you wanted.  When people asked you what you wanted as a present, you would tell them you wanted a water gun so you could squirt Carter!
We love you so very very much Kinley Grace.  You always keep us on our toes and fill our hearts with so much joy.  I hope this year is full of many new adventures for you.  I can't wait to see what this life has in store for you!
Love Forever, Mommy

Monday, January 11, 2016

Kindness


Carter has such a kind heart. I got to take him on a date to Target the other day to spend a gift card and some birthday money. We spent a good hour walking the toy aisle without finding anything he was dying to have. He then went over to the area that has all the Seahawks jerseys. There was a dress there that was so adorable. It was a baby dress that looked like a cheerleader. Carter insisted in buying it for Addison. He wanted to spend all his money on something for his sister. I just could not let him do it. We talked about how kind that was, but I also explained to him this money was to buy a special treat just for himself. Well, he ended up crying right there in Target because I refused to let him spend his money on his sister. Oh gosh, I felt so bad, but I really wanted him to get something for himself. Poor Carter. He has such a heart for his sisters. It makes me so proud to be his Mommy. 
And, he did end up picking out something for himself. And, he loves it. 

Tuesday, December 22, 2015

7 Years Old


Dear Carter, 
Today you turned 7 years old.  Is that even possible?  I feel as if it was just yesterday I was holding my fragile, sick baby boy for the first time.  I wish I would have been able to see into the future on that day you were born.  I would have neve dreamed the amount of energy you have today!!  You are constantly using the couch as a gymnastic mat, flipping off it, and jumping in the air.  I find you standing on your head more then your feet.  
In school, you are excelling at reading, spelling and math.  You are reading close to a third grade level and you have yet to miss a word on your spelling test all year!  Mrs. Hamy is teaching you Spanish and you bust out random Spanish words all day long.  At your holiday programs, you belted out your lines like a pro.  I have to admit, I got a tad teary eyed listening to you say your lines in a room full of 300+ people.  We used to worry you might not even be able to speak, so standing up there partaking in a play was beyond anything I dreamed of after you were first born.
You are excited to get back into soccer this spring.  I loved watching you run around on the field scoring goals and high fiving your tream mates.  
One of the things I love most about you Carter is your deep love for your family.  The first thing you want to do when you get home from school is get Addison up from her nap.  You love to play with your sisters, and even love to get them into trouble some times.  
I love you Carter Joseph.  You are an amazing little boy, and I thank God every day for the light you bring into our lives.  Have a wonderful 7th year Carter! 
Love Forever, Mommy