We made it to the seventh day! So they did the procedure this morning of changing the trach. Thank God it all went quickly, and well. The plan is to get her more mobile once they wean her off the sedation. She has been in bed for 4 weeks today. The weaning has to be very slow since she has been heavily sedated for so long.
Just for fun, here is a picture from December. All good in the ‘hood(ie).
Toby misses Gracie too.
Friends and family, today is Monday and we are just a couple of days away from changing her trach to a different device. We are hoping and praying that the Wednesday, March 18 procedure to change devices will go smoothly and without complication. Even though it is at the bedside, it is delicate.
She has had very restful nights recently, and the days are a bit long and boring but, uneventful. I can’t wait to hear her voice again, no matter what she says.
Regarding last Saturday’s house cleaning, I’m so grateful to the dear friends and family who came and helped me get my house ready for Gracie. It is now much easier to maintain the air quality when the house has less dust-catching items like decorations, rugs and plants.
What I’ve learned:
1. Simplify your house, don’t keep so much “stuff.”
2. Love has many faces. I have been blessed by many people and things recently: A long drive all the way from Naples, just to come hold Gracie’s hand. A well-timed delivery of a box of pastelitos and croquetas.
A warm cup of soup from Panera.
A long quiet walk, and a gentle conversation.
A container of Lysol disinfectant wipes.
A pile of empty boxes to help me clear out my house.
A pile of kindergarten get well cards.
A pile of 6th graders get well cards.
A warm blanket with puppies that look like Toby all over it. A video of dancing poodles to make Gracie laugh.
The words “Thank you” will never be enough.
I’ve been saying it for a while now, Gracie has so much love, she could be the mayor of a small town by now.
The beginning of 2020 brought some new challenges to Gracie’s life. We have been in ICU of Nicklaus Children’s Hospital since the early hours of Thursday, February 20th. Gracie’s medical issues have included pneumonia, aspiration, swallowing difficulties, collapsed lung, and general breathing difficulties. We have tried to move forward from entubation, to BiPap, to regular oxygen, but her body is struggling with each step. She is currently entubated and sedated. Sometimes she can communicate by hand signals, nods and eye expressions. But she is unable to speak for now. Gracie may need a tracheotomy.
In this photo, Gracie was able to enjoy a visit from Juju the Australian Shepherd, a therapy dog.
Prayer Requests
Other Ways to Help
Many of you have offered to help in any way you can. If the Lord permits and we are able to bring Gracie home with a Trach and ventilator, we will need to make many changes at home, specifically making space for equipment and maintaining the quality of the air. If God puts it in your heart, please stand by as I try to plan a simplification, and clearing out of extra stuff in my house, donations, and cleaning. I am very much against asking other people to clean my messes, but I know there are many who are blessed by helping others. And who am I to take your blessing!
Please stay tuned. I will try to make morning and evening updates on this blog. God bless every one of you who is reading this and cares about Gracie.
Febe (Neydie)
As many of you know, Gracie has been participating in a clinical trial to treat her genetic condition at CHOP, the Children’s Hospital of Philadelphia. Because of this, we visit Philadelphia several times a year.
This year, the first visit of 2019 included a special treat. In January, Gracie had the opportunity of a lifetime, to participate in an adaptive ski program!
Just a couple of hours north of Philly, in the gentle rolling hills of the Poconos, we lodged at the Camelback Mountain Resort, in anticipation of the great adventure.
The fun began with an afternoon of careening down the side of a mountain in a huge inner tube. “Tubing” is great winter fun without the requirement of any special skills!
We enjoyed a couple of days at the resort until the big day arrived.
The wonderful volunteers of Pennsylvania Center for Adapted Sports (PCAS) used state-of-the-art equipment to take Gracie up the longest and fastest lift!
The bi-ski was tethered by an expert skier who gently guided Gracie to and fro in a zigzagging pattern down the crystal white slopes, swoosh! Several times the group continued to take the high-speed lift up to the highest peak and then guide Gracie down the mountain at increasing speeds.
What a wonderful and thrilling experience it was for her!
We are so grateful to the lovely folks at PCAS, namely Judy, Peter, Jill, Lynn, and Dave for making this wonderful day a reality. These memories will stay with us always.
Dearest family, friends, and supporters of TeamGracie. We are so grateful for another great year at the Walk the Talk Epilepsy Foundation Walkathon!
You are so appreciated for your prayers, donations, support, and walking. We can’t thank you enough for setting aside your time to support Gracie and this very important effort.
This year the final amount collected on behalf of TeamGracie for the Epilepsy Foundation was $795.00!
Please visit the 2018 Photo Gallery to see all the great pictures of the event. Can you find yourself in the pictures? Did you kiss the big purple lips 🙂 ? Thanks again and see you next year!
Contact Febe at 786-280-8330 or @feebls for more details.
This is the link to
Register to Walk with TeamGracie.org and/or Make a Donation through TeamGracie.org
We hope to see you there!
The Unmasking Epilepsy Event successfully raises funds for the Epilepsy Foundation through its silent auction and various other fundraising efforts in the Fall. This year, the Romeros were humbled and honored to receive the Champion of the Heart Award, given to selected member(s) of the community who battle epilepsy every day; increase awareness; and hope for a cure with their time, talent, effort and resources. We are so grateful and humbled to be recognized in this way, and have only God to thank for allowing us to take a small part in this most important endeavor.
Gracie’s face has been “gracing” the front page of the Epilepsy Foundation lately.
We are so proud of her hard work and dedication to this worthy cause.
Please join us again this year on March 12th at Tropical Park for the 2016 Walk the Talk Epilepsy Foundation Walkathon. Join TeamGracie and walk/give/pray.
We love our team members!
Gracie makes the cover of Epilepsy Foundation’s Facebook Page. This photo was taken at the 2014 Epilepsy Foundation Walk the Talk Walkathon in March. Every purple balloon is held by a Team Gracie representative!
TeamGracie.org 