Emerson's Scoliosis Journey

Emerson has been in her cast for 2 weeks now and is doing great.  Dr. Luhmann got her in case curve down to 60 from 80 in her brace. He said it was a great start! We are so thankful for all the prayers and kind words.  We are also thankful for my parents who took care of Addison and Jenson and brought us dinner after a very long day. Our dogs were well cared for by Amanda and Em received some great comforting gifts from the hospital.  She was also spoiled at school with gifts and daycare as all her friends wore bibs to make her more comfortable. We are so thankful for our doctors, family, friends, coworkers, church family, teachers and daycare providers.  There truly are amazing people supporting us through this journey!

This week has been so stressful!  We are scheduled for casting surgery on Monday, however, Em is not 100%.  She has a runny nose that has led to a cough and is aggravating her asthma.  She is dependent on her breathing treatments every 3 hours at this point and could use them more often.  I am contemplating trying to get into the doctor but if she gets any steroids, cold medicine, or even Tylenol they won't do the casting because going under anesthesia is too risky. Specific Prayer List: Em gets to feeling better without meds Safe travels on Monday Dr. Luhmann can move her spine and get beneficial correction Our family can easily adjust to the changes for the casting lifestyle Thank you so much!

more casting. I know, I was shocked too. Our trip started with the fear of icy roads, however the roads were clear thanks to the road crews. Our first destination is always radiology.  Last time, 6 months ago, her in cast xray was 74. Today it was 80. They had a large number of complex cases today and our doctor was running 2 hours behind.  There was also a fire alarm which was cleared but Em was excited to see the truck and firefighters.  Dr. Luhmann didn't like that her curve had increased. It's at the point where something has to be done. He made the comment that she is just too petite for Magec rods right now. He feels like he can improve the curve with casting.  There will be 3 casts and each will be on for 8 weeks with 1 off week in between each cast.  So, another summer of casting.  Bummer. We will get more info about dates soon but we know it will be as soon as they can get it scheduled.  We definitely feel all the prayers and are c...

As we end this week I can't help but think about next week.  Tuesday we find out what the next plan is.  The way I understand it, there are 3 options that we could hear.  Surgery:   Dr. L has mentioned 2 types of surgeries to us:  Shilla and Magec.  Magec is the one he mentioned at our last appointment and sent information home with us about it, so I feel like that is the one he was leaning towards.   Keep Bracing:   I feel like there is a small possibility that he will say her spine is not pushing on her lungs and we can wait longer.  I only think this because she has grown taller and we have not had any lung/pneumonia problems for over a year (yes I just knocked on wood because the flu going around has me terrified).   Casting:   We didn't feel like he was pleased with the progress from the last casting series.  The number of times she has had anesthesia (7 so far) can also be a concern because the mo...

Emerson:  Why I wear a brace? Mommy:  Because God made you special. Emerson:  Who God? Mommy:  He made all of us.  That's who we pray to. Emerson:  Thinking Mommy:  One day you won't have to wear a brace.  One day the doctor will do a surgery to help your back and then you won't have to wear a brace. Emerson:  What surgery? Mommy:  Dr. Luhmann is going to put a bar in your back to make it straighter. Emerson:  What a bar? Mommy:  Like a stick. Emerson:  I no like that. Me neither.  And as we get closer to the possibility of surgery it is starting to sink in that we have to trust someone to take our baby and make a huge cut in her back and then add hardware to her small spine.  And this won't be the only surgery.  I am going to go back to praying to that God guy now...

Part of the final process with First Steps is a referral to the Pettis County Cooperative for an evaluation.  Emerson qualified for services for her physical delays (mainly reaching with her left arm) and her delays in daily actions, like going to the potty and using silverware/cup appropriately (you can't practice those things and keep a cast clean). The first week was terrible.  She was to ride the bus to and from daycare and she cried a lot plus the trip was over an hour each way.  She also refused to the leave the classroom with her physical therapist, Mr. Jason.  They switched her to a transport van and she has slowly gotten more comfortable with Mr. Jason.  We are so very thankful that she gets the services there.  She loves her teacher and is learning so much.     

Our First Steps assistance ends at age 3 and that means we had to say "Goodbye" to Miss Ashley.  Emerson and Miss Ashley had come a long way.  In the beginning, Emerson would run and scream when Ashley came in the door and in the end she would wait at the door and jump up and down because she wanted to "play" with Miss Ashley.   Along with an extremely patient, talented physical therapist and just overall kind person, Miss Ashley is also a very talented photographer.  Our last session together was very special as she brought her camera and took numerous pictures of Emerson with all her casts and braces so far.  Talk about emotional!  We will miss her and are very thankful for the time she spent with Em and the amazing photos she provided for us.