A Chat with Brooke
How do families react when you bring in the FreeArm for the first time?
Families have been very receptive to the FreeArm Muscle. I have been providing it as a trial. Usually within minutes of playing with it, they do not want to relinquish it.
How many FreeArms does your hospital have?
I believe we have 40. I have given away about 10 so far.
Where is your favorite place to use the FreeArm?
The families that seem to be most appreciative of the FreeArm Muscle are older adolescents that have had feeding tubes for a long time. The patients are mostly bolus fed & the families love the freedom, independence, mobility and inclusion that the FreeArm Muscle offers.
Why do you like the FreeArm?
I love the FreeArm Muscle as a case manager. It has really impacted patient recovery and satisfaction of the families beginning to use it in the hospital. I offer this rather than a Farrell bag venting system. It usually resolves gas, fussiness and distention immediately. It has created a trusting environment between me and my families and they have truly embraced the benefits in very ingenious ways. One patient clips it on their bunk bed. Ultimately, my vision is that the transport team sees the safety component in this product for taking patients to procedures within the hospital and would be the only product used by the patient’s DME at discharge.
Thank you for allowing my patients to benefit from this life changing product. Its simplicity is deceiving. It has truly enabled tethered patients to have freedom and portability that was once impossible.
Kristen and Wynter
Where is your favorite place to use your FreeArm Muscle?
My absolute favorite place to use our FreeArm is the car; because my hands are tied up with driving, it makes life so much easier! My second is in her Wonderfold Wagon.
Why do you like your FreeArm Muscle?
I love our FreeArm because it literally does as the name says frees up your arm. My arms would get so tired, I’d try to tie the syringe up but most the time it would fall over.
What would you like to say to other families reading the newsletter?
You are amazing! Your child is amazing! You are their best advocate. Make sure your voice is heard! Time stands still for nobody, but moments seem to stay still forever. Cherish every second for the gift it is and love as hard as you can. Wynter has taught me that life can change at any moment and even though it can get rough, see the beauty in the change. As there is beauty to be found everywhere.
How did you tube feed before the FreeArm?
I would hold the syringe in the air or try to lean my arm against something. I spilled so much breast milk in the hospital before our FreeArm.
What is the oddest place you've used your FreeArm?
The oddest wouldn’t be exactly the place but the how. A hotel room but, was used to hold up her water bag for the heater that goes to her ventilator.
Tell us about Wynter's medical complexities.
Wynter has an extremely rare syndrome called OFD14 (we haven’t found another) lung disease, Cerebral Palsy, ventilator/Gtube/trach/O2 dependent, kidney reflux, epilepsy, as well as much more that makes her unique.
What is your favorite thing about Wynter? What makes her special?
My favorite thing about Wynter is her beautiful personality and how she can make anyone smile. As well as being the strongest person I’ve ever known. Her battle is still going but, she fights with a smile and strength I never knew existed.
Wynter was born full term unknowingly with airway complications that gave her a first class ride in a jet to Children’s of Alabama a few short hours after birth. We were told she wouldn’t make it. There wasn’t even much of a chance she would make the flight. But, after a 5 month stay (mostly in a Level 4 NICU) and many challenges, we were able to bring Wynter home. She came with oxygen tanks, a ventilator, suction machine, monitors, feeding pump, and emergency equipment. But she is home and thriving. She also loves her siblings Shelby, Gracie, Wyatt, Westen, and Willow but, her brother Wyatt is her favorite person. Her mom has to be with her or holding her 24/7, though she thinks her dad is the funniest.
Stephanie and Enzo
Where is your favorite place to use your FreeArm Muscle?
Everywhere! Wherever we go, the Free Arm goes! It attaches to Enzo's strollers, wagon, backpack carrier, bike trailer...etc! The possibilities really are endless.
Why do you like your FreeArm Muscle?
It just makes life easier. It's so easy to just grab and go. We're a pretty adventurous family so it's nice to not have to worry about how we're going to set up Enzo's next feed. The pump is always attached to the FreeArm so we never have to worry about it! We just introduced Blenderized tube feeds a couple times a day. I love that we can use the FreeArm for both pump feeds and syringe feeds. The Free Arm really gives you freedom. We're so glad we ditched the IV pole and upgraded to the FreeArm!
When did you find out Enzo has Down Syndrome and what was your reaction?
Enzo was diagnosed at birth. His diagnosis didn't show up on the prenatal tests so it was a complete surprise! Jeff had more of a reaction than I did. I was still in the "I just pushed a human out of my body" daze. It was a hard pill to swallow at first. I cried a lot. The future I had envisioned was now unknown. I mourned the child I thought I was going to have while also giving my whole entire heart to Enzo and discovering a new kind of love. A Down Syndrome diagnosis is scary at first but then you realize you've been given a gift. A gift that is learning to take the scenic route, knowing true patience, and celebrating inchstones. I wouldn't trade it for anything. Enzo is my whole entire world and he is a thriving 3 year old! I feel like the luckiest mom in the world!
What would you like to say to other families reading the newsletter?
The FreeArm has really been a huge game changer for us. If you are feeling held back by outdated tube feeding equipment here's your sign to upgrade to the FreeArm. I wish I would have come across this product sooner. It was through a fellow Down Syndrome parent I learned of the FreeArm and realized I had to get it one way or another! I was finally able to get one and the rest is history. We've made up for all that lost time being attached to an IV pole. Hiking, biking, road tripping. You name it, the FreeArm is right there with us!
How did you tube feed before the FreeArm Muscle?
We had an IV pole for around the house. Which was ok but it was always in the way or someone was always tripping over it. Our two playful dogs would get tangled up in it constantly. Going outside or leaving the house was always a task. We managed it but once we got the FreeArm it took all that stress away!
What is the oddest place you've used your FreeArm Muscle?
Enzo and I have just started biking to his weekly Speech and Occupational Therapy appointments in the next town over. So I'd have to say attaching it to his bike trailer would be the oddest place. We've definitely gotten some curious looks along the 12 mile journey!
What would you like to tell other parents that just received a DS diagnosis?
First of all, congratulations! Welcome to the extra chromosome club! Unfortunately, parents are still being told "sorry" by doctors when they receive a diagnosis. There's nothing to be sorry about! You're in for a real treat! It's natural to be scared at first and mourn the child you thought you'd have. You're on the scenic route now. You may encounter feeding tubes, heart surgery, and a few more specialists than you're used to. You may encounter hospital life. Enzo was in the hospital for 3 months after he was born due to his heart defect and needing support with breathing. It's just where he needed to be at the time. It will get easier! You'll look back on events like that and realize it was only a small blip of time. Just remember, it's only an extra chromosome! Reach out for support. There is a huge network of Down Syndrome families ready to welcome you with open arms. Us being one of those families!