Ahhhhh!! I feel like Michael and I have been waiting for this opportunity since Emma was born. Previously we have sent emails to Barcroft TV (also in the UK) who had done documentaries on some other people with primordial dwarfism- including Brad and Bri Jordan, Nick Smith, and Hannah Kritzeck - some of who we got to meet when we went to the Little People of America convention in July 2018. But we never heard back from Barcroft TV. We also sent an email to Ellen DeGeneres this past December, but never heard back from her or "her people" either, and her talk show is in its final season; completely ending in the spring. However, nobody had ever reached out to us before, aside from Emma's first "sprinkle of fame" when she was featured briefly in the local Orlando Health medical magazine last year.
I sent Liana a message back through Instagram and also an email, since she provided her address. I apologized for the delay and, after sending a photo of the messages to Michael, let her know we were very interested in her writing an article about Emma! She never answered my question as to how she found us, but I assume she was searching the primordial dwarfism hash tag. She asked us to send in 10-15 of our favorite pictures of Emma (we sent 15, and also told her she could use anything from my Instagram page), answer a bunch of questions that she had, and to send her a short video of us talking about Emma. We did all of that through Monday, then she sent me what the article would say before publishing it to see if there was anything she needed to change.
I was so surprised on Wednesday morning when she told me that the article had been published in The Sun online!! Google taught me that The Sun is Britain's best place for news and has a massive 33 million people who live in the UK read it online every month!! I'm sure not all of those people will come across Emma's article, but that is so amazing. It was a condensed version of what she said she was going to publish, but they did a great job and I liked the pictures they decided to use. You can read their article by clicking --->> HERE!! One thing I did have to explain to friends when they asked was, since the main caption of the article says "she may never speak" and while I guess that is technically true, we are expecting her to speak at some point, especially since she can make lots of sounds, it just may be a few more years.
I noticed there were several questions she asked me, which were not in the article, and that is totally fine since it was already pretty long, but I'll add them here so you can read our answers, some of which Michael answered. It will probably have a different spacing and smaller font size since I am copy-and-pasting it from my email:
Q: Please can you tell me a bit about yourself?
A: I met Michael in July 2009 when we were in the same film program class at Full Sail University (in Orlando, Florida, USA). We got married in May 2011 after we graduated. We moved around a couple times to North Hollywood, California in 2013 and Birmingham, Alabama in 2014 before moving back to Orlando. Now I work 12 hour shifts as a 911 operator at our local Sheriff’s Office and also talk to the deputies on the radio, mainly running people to see if they have warrants as well as vehicles and guns to see if they are stolen. Michael works as a special effects teacher for a school called VAMP (Vocational Academy of Makeup and Prosthetics). We take turns working so one of us is always home with Emma.
Q: What happened around the time Emma was first diagnosed with this rare type of dwarfism?
A: Once we had our answer, we began reading the very little bit of information that is on the Internet about Meier-Gorlin Syndrome. We looked into different organizations for kids/people like Emma including Little People of America (US), The Potentials Foundation (specifically for primordial dwarfism) and Walking with Giants (UK).
Q: Can you describe Primordial dwarfism as if you were explaining to someone who has never heard of it?
A: Primordial dwarfism is a type of dwarfism where the person is of short stature (ranging from 2 to 4 feet) but fully proportional. A lot of people tend to mistake them to be young children when in reality they could be 22 years of age.
Q: How did doctors react when she was diagnosed?
A: Dr. Glenn Green (at CS Mott Children’s Hospital in Michigan, USA) was pleased with the diagnosis since Meier-Gorlin Syndrome has a full life expectancy, unlike MOPD (a more common type of primordial dwarfism) where the life expectancy is only about 30 years. Dr. Green was delighted that Emma would be able to undergo the surgery and receive the dissolvable 3D printed splints since they would definitely help her for several years, and that Meier-Gorlin Syndrome wasn’t a condition where she could die after a few weeks.
Q: When did you decide to post pictures of your daughter on social media and why?
A: I have always loved taking pictures and was so excited to have a full pregnancy and share the pictures with friends and family. Even when we found out Emma was different I still wanted to keep everyone updated. They cared about her and so many people were praying for her, and even now they still urge me to post updates. When I found more “trach mom” Instagram pages, I made my Instagram profile public so anyone could see her photos. I started my blog about Emma in May 2017 once we knew my pregnancy was irregular. The blog has so many more medical details than I post on social media.
Q: Has Emma shown any signs that she feels different to other kids her age?
A: Due to her medical issues, including small fistulas (holes) in her trachea that heal extremely slowly due to her trachea being “tissue paper thin”, as one doctor described, and our fear of her getting sick again, due to any viruses or germs leaking into her chest cavity via the fistulas, and having to go back to the hospital, which is possible, we have kept her away from actual contact with other kids. We take her to the zoo and to restaurants and the mall where there are other children in the area, but she hasn’t actually played with them. She hasn’t seemed to notice anything about feeling different. Her development isn’t at the point yet where she is cognitively aware of that type of social interaction.
^^ (Fun fact just for the blog: My friend, Alex, wrote that last sentence. It's so good!)
Q: How have her peers reacted to her condition?
A: Once in a while a kid will walk by and look at her and all her medical equipment (a Trach, ventilator and all the tubing, a G-tube). Even my niece will point to a picture and ask, “what’s that?” pointing at the trach. Our answer is usually, “It helps her breathe.” And the kids seem satisfied with that answer. Sometimes a kid will ask their own parent about Emma and the parent gives the same answer, “She needs it to help her breathe.”
Q: What do friends and family say regarding Emma and when they see you now?
A: They are pretty impressed with how well Michael and I work together for her medical care, and how quickly we get her from the house to the car. They can see how much Emma is loved by her huge smiles and milestone progression. Since she was in the NICU for most of her first year of life, her development is delayed, but she is still learning new things all the time. She has learned a couple phrases in sign language, including “more” and “all done”. She figured out how to scoot herself across the room on her back, with the help of her Genu Recurvatum (backwards bending knees). At 2 1/2 years old (January 1, 2020) Emma learned how to sit up on her own. Obviously it is more of a challenge for her due to her shorter limbs and the size of her head, and all her tubes in the way, but she figured it out and makes it work! When I get discouraged, dwelling on all the things she can’t do yet, I go back and read my blog posts of our struggles in the hospital. Not knowing if she would make it through the night. If she felt alone or scared. Was she was in pain being hooked up to so many monitors with IVs and PICC lines in her arms, feeding her a constant stream of medicine- “enough to knock out a grown man” as one nurse put it. That’s how much sedation her body needed. She was fighting to stay awake for us. To let us know she was okay. So now, two years later, it’s easy to see how much she has grown and even though she is moving at a slower pace than “the regular kids”, she is doing so well!! However, because of these big accomplishments our families sometimes think we can do more than we can, like taking Emma on a beach vacation. She can’t be around sand and big bodies of water due to the extra holes in her body. We can’t risk getting sand in her trachea or the vent- same with the water, but we’ll get there one day!
Q: What are your future plans?
A: Our future plans for Emma would be to get her walking. She has new AFO’s (ankle foot orthotics) and is working on standing up. We hope to get her walking as she grows older. Her lungs and airway have been improving and we have been able to “sprint” her off the ventilator for multiple hours each day. We started that in July 2019. Sprinting is when you take the child off the ventilator and allow them to breath all by themselves, with the trach still in. She’s been doing great with that. She started at 10 minutes per day and is now up to 6 hours or more some days! We hope one day that she will only need the ventilator while sleeping. That would be huge for her! Other than that we just have plans to go on backpacking day trips in the Georgia mountains where we hike to see the waterfalls, hike small bits of the Appalachian Trail, and just enjoy life with our girl. She’s our Rainbow Baby.
^^ (Another fun fact just for the blog: A Rainbow Baby is the baby born after a miscarriage occurs. )
*****
We did agree to honor a three-month contract with Media Drum World so that they could have the exclusive interview before we give out information to any other companies. However, the next day, Liana emailed me again saying that a UK women's magazine wants to publish a story about Emma on their website (and in the magazine) too!! I assume that is not against the contract or she wouldn't have told me about it. We were having issues electronically signing it, so I might need to print it and go to the post office to have it mailed overseas to them, but I'm still waiting to hear back from her about that.
Here are some of our favorite 15 pictures that were not used in either article:
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| The day Emma was born at Winnie Palmer Hospital: June 12, 2017 |
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| Snuggling in the NICU when she was 3 months old: September 2017 |
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| Celebrating Christmas in the PICU at CS Mott Children's Hospital, Ann Arbor, Michigan |
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| February 2018, in Michigan |
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| Had to get a photo with Dr. Glenn Green before leaving Michigan: February 21, 2018 |
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| Back at Winnie Palmer, but coming home very soon- after 323 days!! April 2018 |
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| Emma's 2nd Birthday Party: June 2019 |
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| Taking our Christmas card photos: November 2019 |
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| At the Birmingham Zoo: December 2019 |
I will keep you posted on future Emma articles and maybe one day in the next few years we will even be on a US talk show? Kelly Clarkson just started one recently. It would be cool to meet her! ;)
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