Emerson's Scoliosis Journey

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...

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 (i...

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 ...

"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.