Emerson's Scoliosis Journey

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.   

We were scheduled to have the cast removed on Tuesday, but I asked if we could just do it at home (it is so much easier at home).  That also allowed us to have a Cast Off party.  We played in the rain, had lots of water fun, spilled bubbles everywhere and had some messy s'mores (with NO bib).     We had a smooth trip to St. Louis.  When we arrived they worked on cutting and fitting her brace.  I think this takes longer than putting on a cast.  Emerson tries it on and they draw on it, then cut it.  Repeat that about 10 times.  We were there for 3 1/2 hours.   Next is x-ray and on to see the doctor.  Em was extra special this time and was seen by Dr. Kelly (who has done the last 3 cast) and Dr. Luhmann.  Dr. Luhmann explained that the brace is holding her at 76 degrees and he would like her to come back in February for xrays again.  At that time we will see what the curve has done.   He talked to us about placing a Magec rod on her right side.  It wo

Today, Emerson has been in her cast for 2 weeks! We took cast #5 off at home without any hiccups.  Her skin looked really good!   For Cast Off Weekend we went camping and Em enjoyed the sand, water, dirt, bugs, and lots of outdoor fun.  Emerson did complain a lot about her back hurting. Casting Day we were scheduled to be there at 5:30 (3 hours away!). Casting went smoothly.  We didn't get a copy of the x-ray but, Dr. Kelly said that she was holding in the upper 60's in the cast. She picked out and bought her gummy bear tape.   This cast comes off August first and we get a knew brace.  Until then we will continue trying to have indoor fun this summer.  We are looking forward to meeting with Dr. Luhmann and hearing what his thoughts are.

I think it is sinking in that cast life in the summer is going to effect us all.  I used to cringe every time someone mentioned bathtime in front of Em.  "Please don't let her have meltdown about wanting a bath." During the summer there are more things to add to her list of things to have a meltdown about.  1) Dirt, Pollen, and Sand She can't be around these.  They don't wash off since she can't bathe and if they were to get in her cast it could be a disaster.  This has kept us home from Addi's ballgames, kept her from riding the mower with Daddy, and limited our activities outdoors.  2) Water Sprinklers, water tables, the lake, playing in the rain, water guns, water balloon fights, and pools.  This doesn't need much explaining other than that means Addi doesn't get to do these things either and we avoid events with these activities.  And then there is just outdoors in general. The thought of a tick finding it's way under the cast sc

We left at 4 a.m. and arrived at 7a.m. to check in.  We were supposed to have a surgery time of 9, but it didn't happen until 10:30.  We played a lot of hide and seek with her 5 toys to distract her from wanting her apple juice and fish crackers.  She is a pretty good finder! The procedure went well.  Her curve is really "tough" because of the congenital deformities.  The before x-ray with no cast or brace was measuring at 95 and in the cast it is upper 60s, which is what the last cast was.  So she is definitely better off in the cast! While talking to the doctor he said that the real goal of the cast for congenital patients is to stop it from getting worse and if it improves it some before surgery that is a bonus.  They also won't tell us a specific number that would mean surgery had to be done right away.  This doctor mentioned the age 4 as the age they really prefer them to reach prior to surgery. After the long ride home (in a cast :() we decor

We have really been looking forward to today, the day we can let Emerson play in the bath, hug her tight and feel her little body against ours, and let her eat and drink without the constant worry of something spilling on her cast.  And we have enjoyed all of those things this evening, but I forgot how emotional taking the cast off can be.  She wore it for 7 weeks and during those seven weeks we felt confident that it was on correctly and helping her, so when we take it off and see her back it's a little discouraging. Here are some pictures of us removing the cast. Our friends in our support group all said doing it yourself was the best advice they ever received, so we tried it.  They were right. It was so easy! Cast #5 will be applied Tuesday the 25th. We  were originally told we may not do the 6th cast but after seeing the results from cast #4 our doctor said we have to, which means a cast until August 7th. It's going to be a hot summer for our little Em.

"I have M&Ms on my cast!"  "I get a break.  Then, I get new cast.  Minnie!"

I missed National Rare Disease Day, but here is an excellent blog post from Nora's mom. Nora's Journey Rare Disease Day When we first received a diagnosis for Emerson, I came across this blog about Nora and contacted her through Facebook, which lead to joining two Facebook "support groups."  I am so grateful for her and both of these groups for being there when we felt all alone, needed advice, or need support.  Many times she writes things that I feel like I was thinking but couldn't put it into the right words.

Our casting day was quite long!  Our appointment was at 2 and they were running 2.5 hours behind.  Even though Emerson hadn't had anything to eat since the night before she did amazing!  She is such a trooper!  Since we had been rescheduled after the asthma attack and hospital stay, we weren't able to get on our doctor's schedule fast enough, so another doctor applied this cast.  They were able to use the mask for her anesthesia instead of an iv, which was a huge plus.  She even went to the nurses so they could take her back to the operating room without crying (those of you that know Em, know that she is pretty attached to Mom and Dad). The x-ray from our last appointment had shown that the degree was over 80 and the cast improved it to 68.  Considering the last cast had moved it to 50, that isn't a huge improvement, but it is definitely movement in the right direction and will hopefully give her lungs a break so we can stay out of the hospital.  Since a different do