Her Unique Twins

Chrissy’s twin daughters, Sierra and Sienna, are 17-years-old and are a rare set of identical twins where one is a Primordial Dwarf.

Sierra was born 1st.  She’s 4 minutes older than Sienna and is my dairy-free kid.  It’s crazy how we discovered that.  She had always been fine with dairy and then on Father’s Day a couple of years ago, we had Tres Leches. 

We each had a piece.  Each of us was fine except Sierra.  Her tongue and throat started to swell.  It wasn’t terrible swelling, but swelling nonetheless.  The next morning, she was still swollen.

We thought that perhaps it was something in the cake like too much sugar, or maybe there was some acidity that bothered her.  

Over the next few weeks, we experimented with a variety of foods containing dairy and the swelling continued.  Sometimes it was more severe than others.

So, now I have to cook dairy-free meals for Sierra.

She also has a budding music career.  I remember the first time she performed in public.  She was 10.  We were so nervous.  In fact, we were more nervous than she was.  I look back at the video we took and it was so shaky that it’s hard to watch.

After that performance, we thought Sierra just might be on to something, but weren’t really sure what to do.

In a crazy twist of fate, our family was featured in the October 2010 Houston Press magazine.  A local and well-known vocal coach saw the article and saw that the girls liked to sing.  He offered to coach them.

Fast forward 4 years and Sierra is now confident, performing regularly, plays the piano and guitar, writes her own songs and is recording her first album.  She has already played in LA and Nashville.

She is so focused on her music career that she chose to home school so she could finish quickly and get right to her “real life”.

Sienna has been dairy sensitive for a while, so we limit her dairy.  She has also been gluten-sensitive.  

She has been quite a challenge.  She was born weighing only 1 pound, 7 ounces.  For the first several years of her life, she was in and out of hospitals.  She was labeled as “Failure to Thrive” over and over again.  

She had pneumonia many times, RSV, a hole in her heart that required surgery, required O2, was small, required a feeding tube, had severe Reflux and the list goes on.  Doctors said she would most likely not survive and if she did, she would be a vegetable.

Sienna is very much not a vegetable.  While she has Dandy Walker and Primordial Dwarfism, Bronchopulmonary Dysplasia, severe Scoliosis and is visually and audio-logically impaired, she’s very much not a vegetable.

Because she has two major diagnoses that are pretty rare, it has been difficult to figure out what issues come from which and how we should properly educate her, discipline her & medically support her.

So, it’s sort of a day-to-day process and there are times when we seem to sail by and others times that feel like we simply have no idea what to do.

Having a twin has made all of this all the more challenging as she’s very much aware of all her twin accomplishes and is set to accomplish.  So, that throws a special challenge in the mix.

Sienna has found happiness in making people laugh and making them feel happy.  She began doing instructional cooking videos for people who are like her; special, yet urn for independence.  

She’s also in a special-needs cheerleading squad, is learning to play the piano, helps me fight for Little People rights and helps teach kids that differences make them wonderful. 

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