Surgery!

Well, February 28, 2013 came quickly and has gone just as fast. At Kerstin's December 2012 check up with her orthopedic specialist, we were told that she may need to have surgery soon on her feet.  Doctor told us that we didn't want her getting to a point where she wouldn't be able to comfortably wear shoes with them rubbing the bony part of her ankle and start to cause callouses, and we also didn't want it getting to a point where nothing could be done or the procedure would be extremely invasive.

So, about a month later my little princess was chilling on her bean bag after therapy and I noticed that her feet looked really odd, thinking and wondering if she was uncomfortable, hoping she wasn't.  I emailed pictures to her physical therapist, saying that she was not fussy about the position and it didn't seem to hurt but it just did NOT look comfy.  Therapist emailed me back, rather quickly, said that she was sending the pictures to Kerstin's ortho doc/nurse and that she was thinking we had put the surgery off long enough and it was time to go ahead with the surgery!!! I had to walk away from my daughter, I left her with one of teachers and went into the restroom, I could not stop the tears from falling.  No one wants surgery, especially when its needed for your child.

After avoiding this procedure it seemed as if surgery day came fast.  We had to have Kerstin at the Benjamin Russell Hospital for Children at Children's of Alabama at 5:30 am, which meant that we had to leave home at 3 am to make the two hour drive to get her there on time. It was such a quiet and chilly morning, we were surrounded by a lot of people that love, care for and support Kerstin.  If they couldn't make the trip, we had tons of texts, Facebook messages, emails and calls.

Prepping for surgery!  It seemed like every minute someone different came into surgery prep room 30, to tell us who they were, what their roll was in caring for Kerstin. We saw an orthotist, anesthesia tech, anesthesiology, nurses, and her ortho specialist. Didn't know that anesthesia came in so many "flavors".  My moment of tears came when her nurse came and said to me that she was Kerstin's OR nurse and she would be taking care of my princess this morning, and that they were headed to  the operating room.  My heart seemed to skip a few beats to watch her take my daughter down that hall without me!

After 3 hours of surgery and recovery, my princess came out with her pink and purple cast and tubes for drainage.  She looked good, just sleepy, her mouth was dry from the gas and tube they used during surgery. She was still numb from the nerve blocks they used to keep from having to give her so much narcotics right after surgery.  The procedure: Bilateral Triple Arthrodesis ( more info here ), had been performed successfully on my daughter.  Doctor said that he had to lengthen tendons/heel cord more on her left foot and that she would be more sensitive about that one ( that has proven true ). 

Heading home, once mommy figures out how to maneuver and handle her newly rented wheels! Kerstin was sent home with a rented wheelchair because her legs need to be elevated as much as possible and especially when she's mobile ( in a wheelchair ).  We figured it out and we set out for home.  

Happy to be home, sweet home! Blessed that she is a tough little fighter.  She tolerates her pains well and on Saturday didn't need much of her pain meds.  This Sunday morning was not the case though, she actually cried from her pains.  Made my eyes well up, but I held up.  I don't want her to see my cry, especially not when she's still sensitive about what has gone on with her feet.  I do believe and have faith that in just a matter of a few short days my princess will be fine and able to move her legs again without the pains she's getting when she moves them now. She has so much strength and courage, I wish I had the fight she has in her!  

More to come...

Tech in special education...really needed. Great site!

I'm finding Technology in Special Education to be a great thing for my daughter, it still gives her the chance at learning in a fun and colorful way.  Make sure you go check out these great sites. Techinspecialed and AppyMall .

Wordless Wednesday

I CAN'T...

     What a title, right?  Especially when we are in a day and age when "can't" should NOT be an option for us nor our children.  I've had this on my mind for a few days.  I'm always hearing other moms talk about what they can't get their children to do, how they are constantly telling them to go do this, or go do that. I hear them talk about how it's hard to get them out of bed for school in the morning and how they just won't shut up, clean up or whatever it may be.  I sit back and reflect what it would be like for ME to have to constantly stay on Kerstin about getting dressed, taking a bath or cleaning her room.  How it might feel to tell Kerstin to be quiet. I can't!

     I can't tell Kerstin to get up and get dressed, I have to do that for her.  I can't tell Kerstin to clean her room, she doesn't mess it up, even when her cousins visit, they clean it or I'll do it.  I can't tell Kerstin to go to her room, unless taken, she's not able to voluntarily. I can't tell Kerstin to be quiet, her coos, aahs, babbles and laughter is music to my ears!  I could go on and on listing the negative I can't's...there is no point in that.  After 10 years on this journey, my life has changed for the better.  My eyes, heart and mind are opened to new and challenging things.  I've been forced to learn about things I had once never given a thought. For that, I am THANKFUL to God!!!

     There are some things that I know I definitely can't have...I can't let life go by for Kerstin and myself! I can't let or allow my daughter to be sheltered from LIFE.  I can't let Kerstin's disability stop her from being a child.  I can't let society and certain "professionals' tell me what's best and right for my child.  I can't let negativity and ignorance keep me from enjoying my daughter and her enjoying LIFE.  I can't let anything or anyone stop her from making strides and progress!  I can't let a diagnosis determine her boundaries...the possibilities are endless...life is to be lived and enjoyed!!!

Weight...among other things!

Happy New Year!! This is the time of the year when we start seeing all the commercials promoting diet plans, exercise equipment,  quick weight loss pills, shakes, sprinkles, etc...  We've all seen them, and most of us adults are tempted to try them because we need to or just from the mere popularity of them.  Some of our children could even benefit from a form of weight loss that is healthy and for life not fad.

My little one is the complete opposite, and on a mostly liquid, soft or puree diet; we've been on a battle with weight for some time now! God knows I'm doing my best and will continue to do so.  It just seems so frustrating when it seems as if my best isn't close to being enough.  In my eyes and mind!  In all of this, I can say that she has gained 1 pound from her December check to the January weight check.  I am so thankful to God for that, it just doesn't seem like it's enough for me though.

 It seems that way because we've had to deal with the development of a pressure area on her rear.  Due in part to the weight loss and a bony prominence! You don't know the tears I've shed in light of this. We've had to go get the cushion in her wheelchair "feathered" and cut to have a softer spot.  Her position is changed every so often, she's kept dry...things I was doing and it still happened.  OT doesn't want her seated on a "doughnut cushion" because of the risk of pulling and causing even more irritation.

Through all of this, we're still prayerful and very trusting that tings will continue to work in our favor.  Kerstin WILL continue to gain weight, the pressure area will clear!  I am so proud of my daughter and love her dearly!  She is making great strides at work on her Dynavox...had to treat her to something from her fave store, Target!

A message from Kerstin! ;))

Hello,

I’m a member of the Junior Leadership Team at my school and in a few months we will be embarking on a trip to our nation’s capitol.  This 5 day 4 night trip will include tours of the MLK, Jefferson and FDR memorials, the U.S. Capitol Building to meet some of our representatives, an outside tour of the White House, Arlington National Cemetery, the Washington National Mall and other sites.

This trip will give us the opportunity to see firsthand monuments of people that have done extraordinary things to get our country to where it is today, and to also see the places where our lawmakers work on our behalf.

This trip takes place at the end of April and the cost is $550.00; it covers the cost of my travel, room and other expenses.  I am asking for your support in making this trip possible for me. Your generous sponsorship would be greatly appreciated.  Whatever amount you are able to provide would tremendously benefit my educational experience.

You can contact my mom, Mattisa at kwsmom@gmail.com  to let her know of your generosity! You can also make a donation via PayPal, at the "Trip to D.C. Donate" button to the left.

Sincerely yours,

Kerstin &

Just sharing...Someday At Christmas!

My little princess loves this time of the year!  I still can NOT believe that my daughter turned 10 this past Saturday!  Mommy is still in shock and awe!  She has been enjoying herself with all the Christmas cheer; the cartoons, the movies, the decoration and most definitely the music...one of her fave albums is The Jackson 5 Christmas, especially "Someday at Christmas"!


To you from Kerstin!  Merry Christmas!!!