It's a Pageant Thing...

I. Love. Pageants.
I'm not sure where this love stemmed from.
Perhaps it's because being a female, I may be a little programmed to love dresses, makeup, and sisterhood? (Ooooh boy, please don't be mad at me, feminists! ;)
I've competed in a couple, and would really like to do more in the future.
I've always adored being on stage, whether it be for music, acting, or competing. There's something about pageantry that is hard to explain unless you have been in one.

I love the evening gowns.

I love to do volunteer work (no, really! I do!)

You know what else is fun? Parades!

I love all of our sponsors, and doing sponsor photos: 

I also looooove making friends! I've always enjoyed meeting new people and getting to know more about them and where they came from. The women in this pageant I'm posting about (The Mrs. Idaho America Pageant) came from all walks of life. All ages, some with kids, some without. Some were working mothers, some were stay at home moms. But ALL of them were amazing! All of them enjoyed serving their communities and making them a better place. Some women spoke out against domestic violence or child abuse. Some of the ladies had a medical foundation or condition they were working to raise awareness to.

All of my pageant sisters were so kind, and tons of fun.

See? You can't fake that kind of fun! ;)
Even though pageants sometimes get a bad reputation, my experiences have been nothing but positive. I've never dealt with any cattiness or jealousy, or anything like that! As I said, these are some amazing women!

Another thing about pageants is, you learn a LOT! How to walk, how to talk, how to do interviews. You learn to better yourself, and think about how you can help others as well.

  

And of course - competing! I am a competitive person. Although I'm not a person who is devastated if she doesn't win, I sure do enjoy competing. Being on stage is such an adrenaline rush. You never know what will happen, if you'll make any mistakes, or how the crowd will react. That is my idea of FUN!

I can't wait until I get to compete again. Not this year, but maybe next, or the year after. This year has (obviously) been a pretty hectic one, and I wouldn't be able to leave Scarlett for those 3 days of competition. Also, I've been gaining weight lately from all the stress haha (although in all of these pictures, I was actually pregnant with Scarlett - almost 5 months! Hence, there are no pictures of me in my swimsuit ;) so I would really like to slim down and tone up for the next one.

Meanwhile, I will be planning, learning, and getting ready!
One last thing I wanted to talk about was my personal sponsors. Wow! I certainly felt the love and support and encouragement from these businesses and my community.

This was my page for the program. It was in black and white, like the rest of the book.

Have any of you ever competed in a pageant before? If so, what did/didn't you like about it? I'd love to hear your experiences, or questions if you have any!

Well, that's all of my thoughts for now! Hope you all have a lovely Friday!

-Cait

Scarlett's Diagnoses

As promised, here is a simple (as I can possibly get it) description of Scarlett's diagnoses. I'm sure my facebook friends are going crazy by now hearing these words. When I first found out about all of this, I was scared. Terrified. I searched the internet, looking for more information. Multiple times I stumbled upon blogs of mothers just like me. Some showed me a better idea of what to expect, even if they WERE a little scary. Some showed me that you can still have a (somewhat) normal life. And that was helpful. ALL of Scarlett's condition are pretty rare. So to meet or read about stories just like hers makes me feel....not so alone.
I hope that maybe someday, my blog will do the same for someone else.

*big breath*
Here we go!
*cracks knuckles*

1. Septo-Optic Dysplasia:
This condition includes:
        > An absent Septum Pellucidum. That is a part of your brain, midline (in the center.) This can cause problems with vision, coordination, and intelligence.
        > Hypoplasia of the Corpus Callosum (which means it is underdeveloped,) also a part of    your brain, midline. Some children/people with SOD have an absent one. Luckily, hers is there - just very, very thin. The Corpus Callosum connects your left and right hemispheres of the brain. It transfers motor, sensory, and cognitive information between the hemispheres.
        > Optic Nerve Hypoplasia. Remember, hypoplasia means underdeveloped. So, her optic nerves are very, very tiny. About 1/4 of the regular size. 

See how her eyes sometimes do this?: 

 Or this?

 And this?

That is why.



Scarlett is expected to have leaning, mental, and physical disabilities. However, it is too early to tell how severe, if any (which would be awesome, but probably unlikely.)
Scarlett is also blind. Right now, it is hard to say how much she can actually see (because she can't tell us,) however - because of her Nystagmus, small optic nerves, and the fact that her eyes and pupils do not react (move, dilate, or contract) to light, we, her ophthalmologist, and doctors, are all fairly certain that she cannot see. If she can, or if her brain ever figures out a way TO see, the best it will ever be is shadows or blurred colors. 

Side view of the brain.

2. Central Diabetes Insipidus: No, not Diabetes Mellitus (aka, Type 1 or Type 2 Diabetes.) In your Pituitary Gland, there is a hormone called Vasopressin, an anti-diuretic hormone. Scarlett does not produce enough of this hormone. So, her brain cannot tell her kidneys what to do with water. Instead of holding onto water and distributing it, water goes straight through her. This causes her to have high sodium levels ALL the time (which is dangerous - too high or too low sodium in anyone can cause seizures or comas,) and dehydration. When Scarlett has Hypernatremia, she is very fussy, lethargic, she refuses to eat, and she does not have bowel movements. Normal sodium levels are between 136-145. Scarlett is usually above that, the highest being 166. She has recently started DDAVP, or Desmopressin, a hormone that helps her hold onto water. Since then, her sodium levels have dropped and are normal (thank God!) People who have D.I. and are not treated usually pee 16-21 LITERS a DAY!!!! Yes, you read that right!

3. Hypopituitarism: Your pituitary gland controls soooo many things! Scarlett's pituitary gland does not produce enough Vasopressin (see above,) sex hormone, or growth hormone. She produces about 5% (out of 100%) of sex hormone, and not even enough growth hormone to register on the tests (so, less than 1 percent.) This means that she will be of small height and weight (to name the main symptoms) and that she will have a hard time going through puberty, developing, and will most likely be infertile. However, once she is old enough, she will be started on growth and sex hormones, which will hopefully help her. She will be on the sex hormones her whole life, and the growth hormones throughout puberty at least.

4. G-Tube Placement: A G-Tube is a feeding tube that is surgically placed through your stomach. Because of Scarlett's conditions and GERD, it is hard for her to coordinate, eat, or feel up to eating. She is a failure to thrive baby, so she's been tiny for so long! However, even though we hate her having it, we really are grateful for it, because it has kept her alive and fed and growing!

Scarlett's G-Tube (and her umbilical hernia! It has since gone away, haha!)

Here is her set up with her pump:

5. Unilateral closed lip Schizencephaly: You know cleft lips? Scarlett has a cleft brain. It is in the right hemisphere. She is expected to have seizures her whole life because of this (we haven't experienced one yet,) and her chances of developing Epilepsy later in life are very high. 

These aren't Scarlett's scans, but an example. See how there are those huge, gaping holes in the middle of these brains? Scarlett's is like that - only not nearly as big, on one side (not in the middle) and it is closed, like the top images and the bottom left.

Annnnnd she is anemic. WHEW! I think I'm done!!! Are you absolutely TIRED of reading yet?!?! 

If you have any questions, feel free to ask! If you have any comments, I'd love to hear them! Thank you for reading! And I promise, not ALL of my blog posts will be all medical-y ;)

-Cait

"You never know how strong you are, until being strong is the only choice you have."

I have two little girls.

Echo is 3. Scarlett is 4 months, 3 weeks.

Scarlett is a special needs child.

A month and a half ago, we found this out. That she has a whole handful of things we have never heard of. That will change her life. Change our lives.

She is blind, and is expected to have many developmental, physical, and learning disabilities because of her conditions. (More on that later.)

I get so many texts, messages, and people telling me, "You're so brave. I don't know how you do it. Your courage and positivity are amazing and so inspiring!" I love hearing that. I appreciate all of the kind words and encouragement.  

Because sometimes, I don't feel that way at all.

I cry sometimes. A lot.

I think about Scarlett's future. I think, "Will she be happy? Will she have friends? What if children make fun of her as she walks by? Will she ever go to prom or have a boyfriend? What if she is never able to live on her own? To feel independent, to feel like her own person?"

I worry. Every parent worries. But with this, I feel like my worries are magnified.

Ever since high school, I volunteered a lot in my free time. I visited the elderly, did projects for soldiers, donated to women's shelters, and worked and donated blood at the Red Cross blood drives.

But one group of people I never volunteered with was special needs people. I just always thought, "It takes a special person with a big heart to take care of them. And I am definitely not one of those people." Does that make sense? I firmly believe it's not a job for just anyone.

Man, did God have plans for me!....

When it's your child, everything changes. Your mindset changes. The way you process things and make plans changes. Your heart grows a little more, and so does your understanding. 

When it's your child, you research EVERYTHING you can. For a cure. For answers, for help. To learn more about your child. To get a better idea of what to expect for the future.

When it's your child, you DO do it. You take care of that little person with everything you've got. You try your best to be brave, to smile and be strong, so that your family won't be afraid. You try your best to be positive, to look for the good in things. Because things could be so much worse....you could always not have this little angel. This little baby is here, and loves you. You are her whole life, and all she knows. You are the one who takes care of them. Who not only feeds, changes, and plays with them, but who goes to every doctor appointment, gives every dose of medicine, is there for every therapy day, and sleeps countless nights on a couch besides their hospital bed. 

I do it because she is my child. Because I love her, and I want to give her a good life. A happy life. I want her to love and be loved.

The little things make you celebrate. Because they are a HUGE deal for your kid! You learn to appreciate every little milestone they meet, because it shows you how much of a miracle your baby is. 

And the smile they give you each day reminds you that while it may be hard, it will always be worth it.