My Mom Was Glad When They Said I Was a Dwarf


Sienna CollageMy Mom wasn’t sad when doctors said I was a dwarf.  She was actually happy.  Read why here.

Advertisements

New Video from The Short-Order Chef!


short order chef1I started a new venture.  I’ve become The Short-Order Chef!  I love to cook and I want to show other specially-independent people how they can cook “grown-up” meals safely and independently.

http://www.theshortorderchef.com/#!Microwave-Meatloaf/c1fpc/29C0341E-E679-4618-9D74-15513BDBFF56

Most Common Comments


This Friday, ABC’s 20/20 will do an update on Sierra and Sienna and there are always a lot of comments that accompany an article or media coverage about them.  Some comments are nice and others are not.  So, I thought I’d answer a few of the common questions before it airs.

Q: What about the Roloff twins?
A: Yes, the Roloff twins are twins where one is a Dwarf; however, Sierra and Sienna are twins where one is a Primordial Dwarf.  So, we’re talking about different forms of Dwarfism.

Q: How is Primordial Dwarfism (PD) different from other forms of Dwarfism?
A: Little is know about Primordial Dwarfism compared to other forms.  It is a very rare form of Dwarfism.  It is estimated that there are between 100 – 200 PDs in the entire world.  What we do know is that each form of Primordial Dwarfism seems to have its own characteristics and its own medical concerns.  PDs are also different from other forms in that they’re proportionate similarly to that of an average height person–they’re just smaller.

Q: What form of Primordial Dwarfism does Sienna have?
A:  She doesn’t fit into any of the currently identified forms of Primordial Dwarfism.  Doctors believe she, among other PDs, have a yet unidentified form.  DNA research is currently being done to identify her form of Primordial Dwarfism.

Q: Why doesn’t Sienna look like a Primordial Dwarf?
A: Primordial Dwarfism is such a complex form of dwarfism.  While some people with PD have similar features, there are several that do not.  Sienna is one of the taller PDs, but there are others who are taller than she is.  A few other things in Sienna’s life are attributed to being why Sienna looks/sounds the way she does.  For instance, many PDs have very high-pitched voices.  Sienna was on Oxygen for over a year.  This could be the reason why her voice is lower.  Also, she broke her nose when she was about 3 years old.  This could be a reason why her nose looks different from other PDs.

Q: Were she and her twin a result of fertility treatments?
A:  No.

Q: How can a dwarf have an identical twin?
A: “Identical” is a misleading term.  The more accurate word is “monozygotic”.  This means that one egg was fertilized and then split.   The timing of when the egg splits can determine just how similar or different twins are.  Here’s what Wikipedia says:

Despite being genetically very similar, monozygotic twins are not genetically exactly the same. A study of 92 pairs of monozygotic twins, carried out in November 2012,[27] provided evidence that monozygotic twins acquire hundreds of genetic differences very early in fetal development, due to mutations (or copy errors) taking place in the DNA of each twin after the splitting of the embryo. It is estimated that, on average, a set of monozygotic twins will have about 360 genetic differences that occurred very early in fetal development. These genetic differences that occur very early in fetal development will be present in nearly every cell in the body. Genetic differences due to mutations can also occur later in life, but those that occur at a later stage will be present in a much smaller proportion of body cells.

Primordial Dwarfism is a genetic mutation.  This mutation isn’t 100% understood either; this is why doctors and scientists are still looking for answers.

I hope this helps clear up some of the common confusions. 🙂

I also hope you enjoy the show on Friday and see it for what it’s meant to be–a celebration of Sienna knowing that she’s different, but not letting that stop her from having big dreams.

blog post pic

Surgery Update


The surgery went well.  It was longer than expected, but a success nonetheless.

When we visited Sienna in the recovery room and she finally woke up, her first words were, “I’m hungry.”  Haha  Definitely a good sign!

She’s resting comfortably at home now. (Surprising how fast they send you home from the hospital now!)  And she enjoyed all the visitors she has had today.  Her brother even brought her a frozen treat! 🙂

Surgery


Sienna has surgery tomorrow.  She wasn’t nervous until today.  I think once I told her about not being able to eat after Midnight it sunk in that she was having surgery.

They’ll be repairing the opening where her G-Button was.  It could either be a fast surgery or a longer one.  They won’t know until they get in there.

Prayers appreciated! 🙂

Homeschool?


Homeschool students were once thought of as students who were socially inept, “holy rollers” and nerds who read all the time.  That’s not the case now for sure.  Home school is effective and is turning students into great members of society who go on to college, to be business owners, socially successful, athletically successful….

Had you told me years ago that I’d be contemplating homeschool as an option for my kids, I would have told you that you were crazy.

Well, well, well.  Surprise, surprise.  I am now toying with the idea of homeschooling my girls.

Over the years we’ve had several issues with our school district for various reasons when it comes to Sienna’s schooling.  Her special needs are unique and have put her in a somewhat No Man’s Land in the middle and it’s been very difficult to figure out exactly how to educate her.  The administration has already told us that she will not get a regular diploma.  It will be a “modified diploma”.  This declaration during her 7th grade year annoyed me in that if felt like they were giving up on any real hope of her achieving a “regular” diploma.

Additionally, it’s pretty hard to communicate as effectively as needed with some of Sienna’s teachers with regards to clarification of assignments.  Consequently, her grades suffer.

Couple that with issues stemming from mistreatment from other students and I’m really starting to wonder if homeschooling would be more condusive to effecient learning for Sienna.

I’m finding there are more resources than ever before for home schoolers.

You’re probably thinking, “How would that effect her twin and her schooling?”  Well, crazy enough, Sierra is actually intrigued by the thought of home schooling.

For years now, she has wanted to graduate early like her aunt and I did and that’s actually a much harder task to do now than it was in the past.  Homeschooling would allow her a better opportunity at a chance to graduate early.

I would love to get y’all’s thoughts.

Things I have to consider:

1. Extracurricular involvement such as sports and dances

2. Resources for subjects that aren’t my forte

3. Potential costs

4. Making sure that I still teach Sienna how to deal with people mistreating her and making sure she doesn’t perceive home school as running away

Are you currently homeschooling your children or have you in the past?  What else do you think I should consider?