We have been blessed to have the same incredible team of therapists working with Curren since he was 9 months old. This was first covered through Florida's Early Intervention program, Early Steps, which offers services to eligible infants and toddlers (birth to thirty-six months) with significant delays or a condition likely to result in a developmental delay. When Curren turned 3, we were able to get medical coverage through Florida’s Children’s Medical Services (CMS Title 21), a Children's Health Insurance Program (CHIP) plan for children with special health care needs, which continued to cover Curren's 9 hours of weekly PT, OT, and ST. Curren's CMS coverage was critical to maintaining his therapy services at Ability Plus, since our private insurance through Cigna will not cover his services there. We are devastated to share that this is Curren's last week at Ability Plus due to loss of coverage, and despite intense efforts to appeal, Curren will not be able to continue seeing the therapists that have worked with him for almost 3 years now. There is no program in the state of Florida to provide the medical and therapeutic services that medically complex kids need (and private insurance will not provide) once they turn 3 if their families are found financially ineligible. These programs are not only necessary for assisting families with financial need, but also imperative for allowing access to services needed during a critical time of development when left otherwise without access.
To our caring and loving speech therapist - you were the first friendly face we saw when we walked through the door at Ability Plus with our 9 month old squishy baby. You taught Curren how to eat, and before your help, he could not swallow without gagging, choking, and crying. He was struggling with failure to thrive, and you helped him succeed during a time when his GI doctor was recommending a feeding tube. I remember worrying about Curren having a cake to smash at his 1st birthday, in fear that he would choke and cry and scare everyone. But he learned to chew and swallow, and Curren's first birthday party was magical. You have taught Curren how to express himself in his own way, and he is so much happier in life because of that. You have taught me not settle on expectations, and that we should be shooting for the stars. Curren is much more capable than he is often given credit for. Thank you for your commitment and investment in my son.
To our incredibly talented occupational therapist - you have such a unique ability to push Curren to work hard, but still all the while making everything fun. When Curren was little, he loved getting big squeeze hugs from you. You taught him so much, and opened our eyes to the world of spio suits, listening therapy, therapeutic brushing, and joint compressions. You cared so much that you even attended hours of Curren's first IEP meeting, to advocate for his services in the public school district. He lights up at home when we say your name, and almost always claps or blows kisses. He certainly has a special place for you in his heart. You have taught Curren how to play, how to feed himself, how to drink from a cup, and how to point - all things easily taken for granted, but are incredible gains that took years of patience and dedication. Thank you for your passion and determination to open difficult doors for Curren.
To our phenomenal physical therapist - you have changed the game for Curren. When we started coming to Ability Plus for OT and ST, I saw the impressive PT gym, and knew this was where Curren needed to be. When he first started seeing you, he was incredibly static, but through your guidance has now gained the strength and confidence to roll, push, creep, pull, step, and move to get from here to there. You always went above and beyond to get Curren everything that could help him - from hand making his own thera-tog suit (since insurance wouldn't cover it), to personal aqua therapy sessions in our pool. You were tough, yet encouraging, and pulled every ounce of energy Curren had into training his body to move, and most recently, helped him to really "find his feet". Thank you for giving the gift of mobility to Curren. He will only be going onward and upward from here.
To our intensive physical therapists - thank you for your rigor and determination. Spending 3 hours a day every day for 3 weeks with Curren has really changed the way he senses and uses his body. These programs were gigantic jumpstarts to take Curren to the next level. We will be walking sooner thanks to you!
We wouldn't have been able to start on this path without the support from our amazing case manager at Early Steps. You listened to me, and helped me to get all the services Curren needed. We are blessed to have been under your care, and you made a bumpy and unsure road feel much less daunting. Thank you for making Curren's early years filled with the best possible opportunities for him to learn and grow.
This team has been on this journey with us from the very beginning, and has provided so much love and support to Curren, from the office staff to the therapists. It is incredibly difficult to think about saying goodbye. Thank you all for making a difference in Curren's life.
We have had such a busy and incredible summer. So busy in fact, that I did not create one post on this blog! It’s hard to believe that Weston is starting school this week and the summer is over. So in these last few moments, we will be soaking in the sun and the fun, and reflecting on this fantastic summer. Here are some of the highlights:
We attended the 18th Family Café Conference and Governor’s Summit on Disabilities in Orlando, and what a wealth of resources and connections for Florida families! My incredible family and friends came over and helped us cover all the great informational sessions that were happening simultaneously (these ranged from disability scholarships, assisted mobility, iOS accessibility features, tax benefits, IEPs, advocacy, and so much more). We heard a panel addressing Florida’s forward momentum for disability support, led by Governor Rick Scott, State Senate Majority Leader Bill Galcano, the Agency for Persons with Disabilities, the Florida Department of Education, and the State Surgeon General. I had no idea that this event even existed, and we were thrilled to participate and walk away so much more informed and prepared for the next steps in life.
Following the excitement of the Family Café, we participated in the events leading to the Port Canaveral Cove Merchant’s Association Mac Attack Fishing Tournament This year, the CMA chose to use the tournament proceeds to fund Curren’s participation in a specialized intensive physical therapy program at Ability Plus.My employer, BRPH, was a sponsor for the event and funded two boats to participate in the tournament.Despite tough weather conditions, the tournament was a great success. Curren will be starting the Intensive Physical Therapy Program in September, where he will spend 3 hours a day every day wearing a dynamic soft orthosis suit and work on muscle strengthening and active functional movements. At the conclusion of the 3 week program, we expect to see huge gains in hopes of Curren becoming independently mobile. We cannot thank the community and the CMA enough for coming together and supporting Curren in this incredible opportunity!
The boys also had their first horse riding lessons (or horsebacking as Weston calls it). Curren participated in equine assisted therapy, where he rode a horse with two side walkers holding on to his waistband (just in case he lost his balance). The repetition of the horses stride is calming, and absorbing the horses movement strengthens core muscles and increases balance. Curren has fallen in love with horse riding, and all the sweet staff at Walk on Water. I highly recommend equine therapy to anyone with developmental delays, physical disabilities, or autism.
Curren is building a large collection of adaptive tools and equipment at home. We installed a little ceiling mounted exerciser called a Merry Muscles in our living room, and Curren loves to jump and spin around in it. We also got a really exciting mobility device called the Upsee, which lets children with motor impairments stand and walk with the help of an adult. It’s a harness system that attaches to my feet and hips and let’s Curren see the world standing up. We also started see a new orthopedic specialist, who fit Curren with AFO leg braces to give him more stability when standing. He was not a fan at first, but he is doing so incredible with this additional support now! Our living room also has several new “furniture” additions – a chicken and an elephant from bobles, a Danish product line aimed at stimulating imagination and developing motor skills. We are also anxiously anticipating the arrival of Curren’s wheelchair, which should be coming in the next month or so.
And now, for the changes on the horizon! Curren will turn 3 next month, and will be phasing out of the Early Intervention program. I cannot say enough incredible things about our experience with Space Coast Early Steps. My heart is just overwhelmed with the support that has been provided to Curren by our team of therapists, the local community, and our Early Steps case manager. The experience that Early Steps provided Curren has built a solid foundation and has honestly changed Curren’s trajectory in life. As sad as we are to close this chapter, we are thrilled to have Curren start in an Early Exceptional Learning Program at a local public school. He will be attending class 3 days a week, and will get additional therapies at school.
We are also preparing for an upcoming trip to New York, where we will meet with the senior author of the most recent HIVEP2 medical publication. We are hoping to learn more about HIVEP2 and how we can further help Curren. We can't wait to see what Dr Chung can do for Curren - she seems like a truly incredible doctor!
I hope that everyone is (mostly) ready for school and has a wonderful fall! It’s so sad to see summer come and go, but the future is looking so bright!
Like the Morrissey song, I wish every day was like Sunday. I love making peace with the chaos that the week before has left. It has been such a beautiful day today - windows open, listening to Billie Holiday, getting lots of smiles from the little guys. If I had a chance to pause life, it would be right now - to soak this face in forever:
So a few weeks back, we attended the ribbon cutting for an adaptive cafe at the UCF campus. The cafe is collaborative effort between Cole Galloway and Dr Jennifer Tucker, the team that created the UCF Go Baby Go program that built Curren's super cool car last year. It provides physical and vocational therapy for people with mobility challenges by incorporating a specially designed harness system that allows workers to move and function freely. We were asked to bring Curren to the ribbon cutting, to demonstrate the infant harness system, and were honored to be part of the event! Curren's brother and cousin came along to cheer him on, and it was so wonderful to see him at eye level with his peers. The harness allows him freedom and support, but most importantly brings his social experience and personal interactions to a whole new level Thank you UCF and Cole Galloway for your pivotal efforts. I can't wait to see the harness system used everywhere!
Curren is also doing lots of new, exciting things. He has starting waving hi and bye again, and he is doing lots of mimicking and imitation right now. He is working so hard, and making promising gains. All these wonderful people that are part of our team are helping Curren to be his very best, and it's pretty awesome!
This weekend, I attended a special education conference hosted by Brevard Public Schools and the Interagency Council of Brevard. I was super impressed by the amount of resources available and the quality of information presented. We connected with a few wonderful people, and received lots of helpful tips. The keynote speaker, Ashley McGrath, was especially impressive. A young woman with a rare genetic disorder affecting her bones and muscles, Ashley shared her story about constantly defying odds. Her autobiography, UnabASHed By Disability, is available for purchase on amazon (I ordered it last night and am really looking forward to reading it!)
As February draws to a close, a very exciting day is right around the corner. A rare day of itself, February 29th is World Rare Disease Day. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives. Here are some staggering facts about rare disease.
*Rare diseases impact more people than cancer and AIDS combined
I would love to see Curren's friends showing support for him and all others fighting rare diseases! Global Genes has some great social media graphics, I've included some of them at the end of this post. The World Rare Disease Day website also has some wonderful information and personal stories of those fighting rare disease (Curren's story is included on their website!) Thank you everyone!
I am stick-a-fork-in-me done right now. But we were a part of something so awesome this past weekend that I know I won't be able to go to sleep until I tell the world about it. So here it goes (please don't judge me, I am just slightly above zombie mode due to a teething and sick and not sleeping toddler, the poisonous coral snake that was in my laundry room over the weekend, Curren's multiple trips to ER last week, the Christmas tree collapse earlier last week that absolutely sounded like a break-in at 2:00 am - need I go on (I'm sure I missed 6 or 7 other ridiculous moments of the week?)
Curren was a participant in the Go Baby Go program at UCF this weekend. The goal - to provide mobility to children with disabilities through low-cost modifications to off-the-shelf power wheel riding cars. The results were simply amazing. There were 16 lucky kiddos that had a custom car built just for them, from a team of volunteers consisting of physical therapists, engineering students, various professionals, and other community supporters. There was so much enthusiasm and excitement at this event, and it was very touching to see so many community members turn out to help these little guys get such a cool and unique gift.
Go Baby Go was started by by Cole Galloway, a physical therapist and professor at the University of Delaware. He began his mobility studies paired with a mechanical engineer, and they started off by building power mobility robots. But with the price of custom robots so high, they were inaccessible to most families. Even pediatric power wheelchairs run about $5000 a pop. So Galloway's next move was to create fun, affordable toddler ride-on cars customized by using PVC piping, pool noodles, kick-boards, and minor electrical modifications for under $200 a vehicle. Fast forward to now, and he's traveling the country, hosting fabulous events like the one we attended at UCF last Friday.
Our awesome build team (called Team Curren!) included 3 physical therapy students, a physical therapy student's mother, and an engineering student. They transformed an off-the-shelf Lightning McQueen power wheels toy into a moving machine for Curren, customized with special touches, like our large Bruce (the shark from Finding Nemo) sticker and Storm Trooper kickboard back.
While our incredible build team was busy making our vehicle, we got to meet new friends and try out another one of Galloway's creations - an infant harness system, supported from a simple support structure above that allows freedom of movement almost like a bridge crane - forward, backward, left, and right - all seamlessly. This harness and support system was utilized at the University of Delaware's Go Baby Go Coffee Shop, where adults with traumatic brain and spinal cord injuries engage in vocational rehabilitation and work at the cafe.
At the end of the day, Curren tried out his car for the first time. He was at first pretty perplexed by the idea of being able to move by pressing a button, but he quickly caught on and loved the idea of free movement. All the kiddos got together for a group picture, and it was overwhelming to see all the little ones lined up in their customized set of wheels. I am so incredibly grateful to Cole Galloway, UCF, and Team Curren for including us in this awesome event. Curren has been sporting his wheels every day since the build.
For more information on Go Baby Go, including upcoming events and how to participate or volunteer, be sure to check out the links below:
And for a little more background on Cole Galloway, check out his TEDMED, "A Movement for Mobility":
Curren was spectacular at therapy today. There have been days that we have questioned if our intensive efforts are paying off, but today was not one of those days. And I have to say that Curren's therapists are truly spectacular, too. His physical therapist actually made him a unique suit that resembles a TheraTogs wearble therapy garment from neoprene and strong velcro straps. The suit promotes trunk and joint stability, provides sensory input, and corrects alignment and posture. And he took off with it! Curren crawled reciprocally with minimal prompting and support for the first time, and he went about 6 feet! I am disappointed that I missed it, but am so thrilled that dad was there to cheer him on!
Curren's Monday's are really action packed. He has speech therapy at 8:00, where he works on feeding skills, receptive language skills, and expressive communication through speech, signing, gestures, and imitation. At 9:00 he goes to occupational therapy, where he focuses on fine motor, gross motor, and visual motor development. He also does lots of sensory integration exercises, such as listening therapy, spio compression suit therapy, therapeutic brushing, and joint compressions. And at 10:00, he ends the morning with physical therapy, where he's been kneeling, rolling, army crawling, and working on mobility with adaptive equipment.
Therapy is such a critical part of Curren's daily routine. We learn so much from his therapists, and replicate their work at home. We receive therapy through Early Steps, Florida's Early Intervention Program and are so grateful for the services he receives.
Early Steps is Florida's Early Intervention system that offers services to eligible infants and toddlers (birth to 3 years old) with significant delays or a condition likely to result in a developmental delay. Early Intervention is provided to support families and caregivers in developing the competence and confidence to help their child learn and develop. If you are interested in learning more about your state's Early Intervention Program, please check out the link below and search for your state:
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.