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Tell me something good
The blog titled "More Interesting Than Your Alopecia" celebrates the rich and refreshing diversity in Alopecia World. This is an opportunity for you to share something about yourself that's unique and wonderful. Are you an artist? Are you a sky diver? Are you a published author? Are you a media personality? Tell us something good about yourself that's far more interesting than your alopecia. Every member of Alopecia World is encouraged to share! :-)
Replies to This Discussion
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Permalink Reply by kastababy on
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Here's something interesting, especially in this day and age:
I am the oldest of 13 children, I was a 4-year-old second grader, graduated from high school when I was 16, and got my first bachelor's degree from Vanderbilt when I was 20. To hear my closest friends tell it, I overcompensated for being bald by having a BIG brain!!!
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Were your trips for the same thing, or for all the various minor emergencies that make up a very active childhood???
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Permalink Reply by Miranda on
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I guess I'll use this to show how my daughter (although all of them are) is so special. To begin, I got pregnant when I was only 17. The best mistake I have ever made. I got really sick with appendicitis at 13 weeks. I had an appendectomy, and the next day, during an ultrasound, my twins were diagnosed with Twin to Twin Transfusion Syndrome. My doctors suggested we abort the pregnancy because it was diagnosed way too early, and my other twin had no measureable amniotic fluid, and no visible bladder. I refused and was heading toward frequent amniocentisis. Which was the only treatment available here in New Mexico. My mom went home and researched and found a program in Florida that had a research surgery that increased the odds of survival to 85%. The next week I was on my way to Florida for the surgery. Della was diagnosed with a heart condition right before the surgery through ultrasound. I had the surgery, saw my beautiful babies through a scope, and then woke up the next day. During the ultrasound, I found out that my daughters had survived, and Angel had a small amount of fluid already around her. 5 months later, at only 29 weeks, my daughters were born. Della was born 3 1/2 pounds, and Angel was 2 pounds. Della and Angel were on ventilators, feeding tubes, central lines, etc. One moth after Della came home from the hospital, she stopped breathing and was sent right back into the ICU. Discharged and healthy she came home. 2 Years later she was diagnosed with alopecia areata and kept on smiling. Today, nearly 5 years old, she is all smiles, and very, very smart. She still faces a heart surgery in the near future and has asthma, but you couldn't tell. She makes friends easily, and is such a beautiful girl. Her favorite thing to do is wrestle with Daddy, and holds her own very well. She can say her ABC's, write her name, and all of ours, and is always telling me something else that I never knew she knew. I think that this girl is amazing and a trooper. She has survived so much, and has come out of it all much better than I think I ever would. It's astonishing how strong little kids are. Whenever I get upset about the clumps coming out, I get comforted by her, when it should be the other way. I hope that one day I could be half as strong as this little girl is. She is looking forward to kindergarten starting in august, and is taking on the world, one step at a time.
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Permalink Reply by BrandyLynn on
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Oh wow Miranda!! Your a strong woman overcoming such struggles in life. Out of curiousity...what is Twin to Twin Transfusion Syndrome? I'd like to hear about it as I never heard of it.
Della sounds like a great little girl as well as Angel. She's dealt w/so much in such a short time but sounds like she's developed a wonderful "soul".
Once again,...I envy your courage, bravery and STRONGNESS as a mother!! How proud your family must be of you.
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Well, Twin to Twin Transfusion is where your identical twins share a placenta. The placenta vessels are divided unevenly, where one twin will get more blood and nutrients than the other. In my case, They shared, I believe, 4 vessels. Della was receiving too much blood which put a strain on her heart, which is believed to be why she now has a heart disease, Aortic Stenosis. Angel, on the other hand, didn't get enough at first. She didn't even have enough to create urine, which is what amniotic fluid mostly is, on ultrasound, before the surgery, she didn't even have a visible bladder. Angel doesn't have any medical problems now, she is just very petite. She is almost 5 and only weighs 30 pounds, where Della weighs nearly 50. Everyone always thinks I have a 5 year old, a 4 year old and of course my 6 month old. But they are identical twins!
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Thanks for the explanation!!! I find it interesting.
I have a friend who had twins and they are completely opposite as well. Born early and not weighing much one was put on steroids for growth..etc. She became an obese baby, child and now 12 year old...looking like she's 15 in size now. Her twin has different hair color, eyes and weighs less then a 12 year old should weigh but not by much. I haven't seen them in awhile though. People would NEVER know they are twins and think they are years apart as well.
YOu menioned Della will have another heart surgery?? What will they do and how long will it be before she has it?? She's such a strong little girl from what you have said.
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Well my girls look EXACTLY alike, it's kinda like Angel is Della's "mini-me". Except Della of course, has a lot less hair and Angel's hair is thick. They also act completely different, you can definitely tell they are their own person.
Well, it looks like they want to push it back until she is six. This way they can expand it with a balloon opposed to open heart surgery. I would much rather prefer that too. Faster recovery and A LOT less risky. So, hopefully she can wait until she is six.
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Do you have this done locally or do you have to travel to another hospital??
I know here at the local hospital they won't do anything like that and send you to another hospital about 2 hours away. Even if they did do it at the local hospital I wouldn't trust them. It's called Dickinson County Hospital ...DCH...which truly means "Don't Come Here"!! LOL!!
Your daughters look so precious in the photos on your page!!
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HAHA. Well, fortunately, we have two really good hospitals in Albuquerque. We have a Presbyterian and the New Mexico Trauma Center hospital (UNM Hopsital). I know that UNM is one of the top Research/Learning facilities in the Country, and is in the top 50 for cancer. Presbyterian is not far behind them. My daughter is at Presbyterian with our insurance, and before I had Aaliyah, I worked at UNM. I trust them here 100%. Although, in some cases the Denver Children's hospital is always another choice for the doctors here.
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Oh Great!! I'm glad you feel that way about the hospital system there and that you have two places that rank as top hospitals. It's such a major surgery and I'd really want to find a place that I could trust that all would go right or have the oppurtunities available for emergency services...etc.
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