Emerson's Scoliosis Journey

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.

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. ...

We are scheduled at 2 o'clock tomorrow! Here are pictures of her current back,  the brace she has worn for over a year, and her as a frog after an extra long shower.