Emerson's Scoliosis Journey

Last Thursday Emerson went back to school, over the weekend she went back to church, and she is FINALLY sleeping through the night without crying and moaning.  She still complains of her shoulder and her leg hurting periodically, but overall she is happy.   On Tuesday she had her post-op appointment and we were pleased.  We weren't able to see Dr. Luhmann because he was called out to an emergency surgery, but we met with Dr. Kelly and Janet.  We asked if Emerson could use the EOS, lower radiation x-ray machine and they said we could try.  You have to stand really still for it to work and Emerson is now the youngest patient they have had use it at their hospital. Yay for less radiation! I didn't get a picture of Emerson handing out these yummy cookies to all the doctors, nurses, and staff but she was so excited to tell some of them she was doing good and give them a treat.   Dr. Kelly checked the incision and the movement in her legs as well as told us the x-

On Monday it was 1 week since Emerson's revision surgery (3 weeks since initial surgery) and quite a few things happened! She decided she wanted to go to daycare for part of the day and she had a great time but was very tired. Daddy was on vacation and got to take her. It was time to take the bandage off.  Thank goodness for Amanda and her adhesive remover and treats for afterward. "A scar simply means you were stronger than whatever tried to hurt you." The bump on the top right is the actual rod. Em had her first shower in three weeks! We think the rod is still doing its job.  There is, of course, no way to tell for sure until we get an x-ray, which will happen on December 4th at our follow up appointment.  The bottom is very itchy and we are not allowed to cover it, so we really hope she doesn't mess it up by itching it.  She is weaning herself off the pain medications which means we are actually getting some sleep at night and not having to wake her

We made it to surgery day healthy! After doing a quick celebration for Craig and Jen's birthdays on Sunday night, Craig got Addison and Jenson settled with my parents and we left Sedalia at 2:30.  Emerson was supposed to be on a clear liquid starting at midnight, so we gave her a tylenol then.  She slept for the first hour and a half, only waking up when I hit big bumps (bridges have the worst bumps), but then as the medication started wearing off she was getting really uncomfortable, so I called the 24 hour nurse (she has become my friend) and we gave her another tylenol. I thought Emerson might freak out if she realized she was having another surgery, but it must have been pretty uncomfortable because she didn't.  She was however determined to tell the doctor what part he needed to fix and did show him the specific spot.  Craig took her back to the surgery room and she held the "sleepy breathing treatment"  all by herself.  We were pleased with the apologi

Em is doing amazing!  She does have some discomfort in her lower back where the bar is not attached.  She is off the oxycodone (thank goodness because getting her to take that is torture) and is only taking tylenol and valium.  She still needs lots of pillows to stay comfortable but in between resting she is walking, riding her trike and moving around freely.  We have told her that we are going Monday for Dr. Luhmann to look at that part on the bottom and make sure it's right.  I am afraid of how she would respond if we used the word surgery again.  We do know that the surgery will not be as hard as the original surgery.  They will open up her lower incision and reattach the hook.  She will have to go under anesthesia again but she will not be required to stay the night.  Our arrival time is 5:30 Monday morning.  We haven't decided if we will go up the night before or leave early morning.  I am concerned about her comfort in the car and having to stop for breaks.  It will als

Day 9 Emerson really started moving around well on Tuesday.  She also had some more visitors. Day 10 Emerson was complaining of a tummy ache but was still eating and moving around so well. She really only needs help getting on the toilet.  She can maneuver everything else by herself.  We also started spacing out medicines and she doesn't seem to be in pain. Unfortunately we have had a turn of events.  Addison tested positive for strep a and after looking at a picture of Em's throat they want to test Em in the morning.  We are hopeful she doesn't have it but almost certain she does. This would put her revision on hold.  We will know more tomorrow after her family doctor visit.  It will be extremely unfortunate if she has it.

We recieved some bad news this morning.  We don't know a lot of details at this point,  but Emerson will need a revision surgery next Monday.  Sometime between surgery and our going home xray her bottom hook came unattached. They did say she would get to come home the same day. Thank you for your continued support 💚

Emerson needed the weekend.  She needed her dad and her sisters. Early Saturday,  she was saying she needed to walk and would ask someone to help her. By Saturday evening she was getting up by herself and walking around. Then she started moving around on the couch to get closer to Addison or Dad.  She spent most of the day coloring and watching movies. On Sunday,  she complained of quite a bit of pain but was still moving around on her own.  She was also sitting on Dad's lap and cuddling.  Sunday evening,  we took off the bandages with the help of Amanda.  Emerson has extremely tender skin.  She used to refuse to use bandaids it was so bad. So,  taking off all that clear bandage that about covered her back was heartbreaking. It was also heartbreaking seeing the actual scar and stitches.   Our sweet girl has been through so much and is so strong 💚 

Emerson is starting to ask to get up and walk.  However she still cringes and cries when she walks.  She is eating and drinking well.  We are still struggling with sitting up to eat, but it's getting better.  She can lounge and eat but for a meal someone has to feed her.  Addison fed her spaghetti for supper.  I am still trying to get the stool softeners snuck into her food and drink and I am getting a little worried about that. We had a movie marathon with lots of great Disney movies plus Wizard of Oz. She was awake more today.  We took her off the Valium during the day which I think helped.  She took a couple cat naps and her regular nap which is good because overnights her sleep is so interrupted. She rotated between the big recliner,  the couch,  and Meelah's mini recliner that we borrowed.  She got to talk to her teacher on the phone.  Christy delivered some ham and green beans from the church ladies.  Pops came and sat with her while I picked up Addi and Jenson. 

Thursday had some ups and downs.  Craig has gone back to work.  I spend the day encouraging Emerson to walk, take her medication, and eat/drink. At one point she said, "Mommy, I can't do this." Emerson's bracelets came in the mail and we love them! We tried to see how much she grew, but since she isn't standing completely straight yet I think it's actually more.  Addison and Jenson came home and Emerson was so happy. Mom and Dad came over and Amanda brought spaghetti and garlic bread (Em's favorite). She ate a good amount of food for the first time. While she had guests, she was readjusting herself, walked a few times,  and actually enjoyed herself. It was good to see. There were many times that I questioned whether we had made the right decision with this surgery, but then I remember the alternative of doing nothing is not an option either.  We will just keep trusting God and praying that her recovery speeds up at some point soon and her pain is a

Telling it with pictures today. Emerson's bandages Side view before and after Front view before and after Trick or Treating laying down. The nurses came to her. Headed home to heal Happy to be home!

Pre Surgery After agreeing to change our surgery date, Jenson got sick.  She woke up in the middle of the night coughing like crazy.  Croup had been going around daycare.  We decided to keep her home on Friday, let Emerson go to daycare and after daycare Emerson spent the entire weekend at Grams and Pops to prevent her from getting sick.  I was in communication with Shriner's throughout the weekend and eventually decided it would be safe to continue with surgery.  Craig had been going back and forth to hangout with Emerson, but I hadn't seen Emerson since Friday morning.  Jenson had visited the urgent care Saturday and was being treated and feeling better.  After thinking all weekend that they would cancel it and Jenson being clingy and needing extra attention all weekend, nothing seemed ready.  Sunday was a mad rush of disinfecting the house, making substitute plans, laundry, and packing.  Day 1 At 2 am I took a loaded car with Addison and Jenson to Mom and Dad's to

Sometimes,  plans change and you just have to roll with it,  or maybe plans change ALL the time and you scream,  then cry,  then roll with. Today Shriners called. They had a cancellation for Monday at 7:30 and they wanted to know if Emersom wanted it.  After thinking about,  Jen's birthday,  her birthday party,  our holiday plans,  substitute plans,  Emerson's current health,  and seeing if all the right people could get off work, we decided to for it.  Why take a risk on her getting sick? Her surgery is scheduled for 7:30 Monday morning.  We would love to see all that green again! Please send us a picture.  This does unfortunately mean the current shirt order will not be done in time ☹  I know this is a bummer.  My mom also ordered some really cute bracelets that we will have the end of next week. We truly appreciate all the prayers and hope you keep them coming!

 In the past two weeks... Emerson has received so many wonderful gifts (this isn't even all of them). Had lots of support. Been packed and ready to go. Had the opportunity to do one more photo shoot before surgery. And finally received a new surgery date! Her cough is still there but improving.   We can only hope and pray that she can stay healthy! Take 2 will be on Monday,  November 5th.  If you ordered a shirt since the last order, I am putting that in today.  Thank you again for all the support!