Friday, October 3, 2014

AimeeKay: Readers for Rett Awareness

***Thank you so much for letting us take over your blog today for Readers for Rett's Awareness! Before we get started, to all your wonderful readers. Our Event, Readers for Rett's Awareness, is being held on Facebook here. We have three wonderful girls and their families who were able to take the time out of their crazy schedules to let us take a peek into their lives. We also have some wonderful sponsors who have donated awesome prizes for each of the girls to give away AND a grand prize. The contests will be open until Sunday, October 6th at midnight, so please feel free to come join us! Meet the girls, learn about Retts, and have some fun at the same time!***
Hi! My name's Aimee.  My friend, Rae, and I wanted to help spread awareness about Rett's Syndrome and introduce people to girls and their families who live with it every day. (To find out more about Rett's Syndrome click here and check out our event.) Please also understand that because of the debilitating effects of Retts the girls are unable to answer directly for themselves. So their family has been kind enough to answer for them. 
I'd like to introduce Gabby and her family!

Crystal what is Gabby's favorite movie? 
She likes brave But lately has been watching Charlettes Web a lot!

Who is Gabby's favorite Disney Princess? Mine is Aurora from sleeping beauty!
Merida from Brave, of course!

What is a typical day like for your family and Gabby?

I wake up at 5:30 and talk to the nurse about what happened overnight. Now I take our new puppy outside too! I then get Toms lunch ready, feed Caroline (The new puppy!), and get the nurse off at 6am. Tom leaves. Meadow, one of Gabby's older sisters wakes up and gets ready for school. I get Meadows medications ready for her. Mead leaves for school. At 7:45 I start to get Gabby's first set of medications ready. They are due at 8am. The nurse for day shift comes in. Gabby gets meds or something at:
 9 am
10 am
11 am
2 pm
3:30 pm
5 pm
6:30 pm
8 pm
9 pm 
10 pm
11 pm 
1 am
2 am
3 am
4 am
5 am
6 am
And those are just regular meds or water flushes. Then she gets her inhaler, which is given through an extension in the hose of her CPAP machine and her vest treatment. Sometimes she doesn't always tolerate it all at one time and we break it up. She gets a total of an hour a day. Sometimes we end up doing ten minutes an hour. Then she gets the coughalator treatment, and, if necessary, after each time the vest is used. She hates this. Then the suction machine. Every 4 hours her formula needs to be refilled. Once a day it is mixed. The formula is very exact. It's mixed down to the milliliter. The bag that holds it is changed every day. It's rinsed out 12 hours after being opened. Her tube is flushed twice a day. The extension as well.

Then at 4 the day nurse leaves and some days the CNA comes in, some days not.  Then homework, dinner, dishes, normal stuff. After the overnight nurse comes in at 10, I set things up for the following day. 7 syringes of medications. I set them up the night before because all of Gabbys meds are pills. Most kids with feeding tubes use liquid medicine but she can't because of the specialized diet she is on. The Ketogentic formula is low sugar and low carbs. Liquid forms of medicine have lots of both sugar and carbs. So since the pills need time to dissolve, that's why I set everything up the night before.

Now that's just the routine stuff.
Then there are the times when Gabby's pulse ox goes off continually for HOURS. Someone has to be at her bedside stimulating her, patting or rubbing her chest or her back constantly. If you stop, she drops even more. It is horrible to watch. For those that don't know, the best rate you can have is 100. Docs usually get concerned if you drop under 90 for a few seconds. Gabby has dropped to 1, then we lost signal and had to use an Ambu bag to bring her back up. It was for a total of almost 5 minutes. Two weekends ago she dropped to 3. Yesterday it was 16. These are numbers that aren't supposed to happen. Some of her nurses have never seen seen them. Some actually don't even believe that she does it, at least until she does do it. Oh and then I also have to mention her seizures. Which she has everyday. She takes three different seizure meds twice a day, plus the keto diet. And a rescue med, another medication that could be considered somewhat for that.
Gabby is not only home bound but bed bound. Since June she has been home under hospice care. She also has a DNR. We just went on Gabbys Make A Wish trip. To Disney!!! It was wonderful. But, I fear it may be the last she leaves the house. She has struggled a lot since coming home. She has seizures almost daily. She would not have even come home from the hospital if not for the CPAP machine and oxygen. And I, nor does anyone else know how much longer those will help.
We keep her as calm as we can. We spend as much time as we can with her.
You just got a dog! What kind of dog is it? What's its name?

Caroline is a poodle mix (I don't know what's she's mixed with). She's a year old (Sept 25, 2013) she's all black. She's been great so far!

If there was one thing that you really wish you could tell people about Gabby or about your family and how Rett's effects it, or just about your family in general what would it be? 
Gabby understands! Everything! She may not speak with her mouth, but she knows. When you talk, she understands. Not to talk to her like she doesn't. Hell any kid, or adult for that matter, that is disabled shouldn't be talked down to or around like they aren't there. They get it. She is 11, not 1. If you look at her you would understand. 
 I know sometimes people are unsure of what it is ok to say or ask when they meet Gabby or other children with Rett's, or other disabilities in public. How would you prefer people to react? Is there anything you wish they would ask? or Wouldn't ask? 
I personally would rather people ask...ask anything. I will answer any question, anytime. I can't stand when people stare and then just walk away. I've gone up to people and handed them Gabbys purple card, waited for them to read it and then asked if they have any questions. Some do, some just walk away. Some people don't know how to ask, or what to ask. Just ask, that's how you learn. Gabbys sisters go up to other children and bring them to meet Gabby...they are truly wonderful sisters. 
You just got back from Disney for Make-A-Wish? What was Gabby's favorite part?
Disney was wonderful!!! Give Kids The World is simply amazing. I can't begin to put words to what trip meant to us. Universal. The minions. She loves them!!

Thank you so much Crystal and Gabby for answering all my questions and letting us get a look into your lives. To get to know more about Gabby and her family come stop by the event and say hi!


  1. It's a wonderful interview and it's really touching to read it. Thank you for sharing with us.

    1. Thank you for taking the time to get to know Gabby! Be sure to stop by the event today. She's there right now with her mom commenting. (The link to the event is at the top of the post)

  2. Not a syndrome I'd heard of until now. Thanks for a great insight into the condition, and well done for spreading the word with such a personal account.

    1. Thank you! Gabby and her mom are currently at the event speaking with people. (The link is at the top of the post.) So be sure to stop by and say hi if you get a chance! :)

  3. Thank you for sharing Gabby's story with us ❤️

    1. You're welcome. I'm just glad to be able to help her share her story. :)

  4. What a beautiful and touching post. Thank you for sharing Gabby's brave story.

    1. You're welcome. As I said I'm just glad to be able to help her share her story. I wish I could do more. Feel free to stop by the Readers for Retts Awareness to meet Gabby and the other Rett's girls that were nice enough to let us interview them and to find out more about each of them.

  5. Hi guys!
    Thanks for commenting! (You all know how much I luvs the comments!!!)
    I know some people from the event said they were having trouble commenting. (I think it's cause they are viewing it on their phones?)
    I just wanted to let you know if you try to comment and it won't let you, just let us know back at the event main page on the post about the interview. Also feel free to leave whatever comment you were going to make there. I know the girls have REALLY enjoyed the day so far.

    1. I don't allow anonymous comments because of spam, but anyone signed into any kind of commenting profile should be able to comment.

  6. Thank you so much for sharing Gabby's story with us! I had never heard of Retts Syndrome before your posts, I've learned so much. Gabby is a lovely young girl and her family sounds so loving and supportive. I'm glad they had fun at Disney with the minions!

    1. You're welcome! And thank you for spending the day with us today! The girls love all the comments and pictures people have been sharing. :)

  7. What a great story. Of course I noticed the dog part. ;) Congrats on the puppy! Disney does seem to be accommodating to those with a need. Hope she gets to go again and have more fun!

    1. Thank you so much for hosting their interview today! I hope she does too.

  8. That's so sad. I can't imagine having enough strength to get through having a child sick like that. I get stressed out when my kids are just normal sick! Thanks for bringing this to our attention, I hope lots of money is raised!

  9. Lovely interview, how exciting about the trip to Disney, and what a grueling schedule. The puppy was a wonderful idea. Animals have a calming effect on ill children.

  10. I'm touched that you shared Gabby's story with us. There is so little known of this horribly debilitating disease. Knowledge is power but it also gives understanding and I love that you stressed that Gabby understands EVERYTHING! She is, above all else, a little girl who loves Disney princesses and has the same dreams of any other little girl who isn't affected by a horrible disease.
    I really want to thank you for sharing your story.

  11. Thank you for sharing your story and help raise awareness. I had a niece that had Rett Syndrome. It was over 15 years ago and no one had ever heard of it which make the experience even more frightening.

  12. Awwe, this is so touching. Thanks for bringing awareness to this.

  13. Thank you guys so much for taking the time to meet Gabby and hear her story. It really meant a lot to her and her family. You all know how much I love me some comments, but really for her they meant soooo much.
    So just thank you guys for being awesome followers and comments and just everything!
    And thank YOU Melissa for hosting her interview and helping to promote the Rett's Awareness event.
    Thank you! Thank you! Thank you!

  14. Hi,
    Thank you to everyone who came and took time out of your day two months ago to meet Gabby. This morning at 4:45 am surrounded by her family she lost her fight with Rett's. She will always be remembered for her bravery and strength, her love for others and her laughter.
    Thank you for helping to spread her story and the story of the other children suffering from this horrific disease.

  15. I hadn't heard of Rett's Disease- so this post was very informative. I am so sorry to hear that Gabby lost her fight. Sending hugs and positive thoughts to her family.


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