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 two specialist appointments this week, and both have come back with abnormal findings. Yesterday, we saw a pediatric opthamologist, who discovered that Curren was mildly far-sighted with astigmatism. He was also diagnosed with esophoria, a condition where his eyes tend to move inward, especially if one eye is covered. This most likely results from his generalized low muscle tone, and it is not severe enough to require glasses (I can only image how unsucessful attempting to wear glasses would be at this time in life!). Today, Curren visited a cardiologist for the first time. His EKG resulted in "boderline" abnormal findings. They found that he has a polarization abnormality in the electrical charge just before his heart beats. He had a echocardiogram following these results, which made the cardiologist feel pretty certain there were no concerns at this time, which is fantastic news.
I am grateful that we so often receive "mildly" abnormal results, but it is a bit nerve racking to always have abnormal findings. EEGs, swallow studies, MRIs, growth parameters, metabolic testing - all of these things have come back abnormal, but not severely enough to warrant any action. It is now clear that abnormal has become the new normal. This is my son, he is not like any other, and I love every inch of his "unique" self.
We also had the amazing opportunity to be seen by genetics and neurology at Massachusetts General Hospital in Boston last week. Our experience was incredible, and we left with lots of optimism about Curren's potential, We also provided skin biopsies, for the potenial hope of doing stem cell research and creating patient derived cell lines for further study of HIVEP2 disorder. Another perk on the trip included the chance to meet one of our newest HIVEP2 families from Boston and the author of the first HIVEP2 paper for dinner. Our tiny universe is expanding, and I am so excited for what the near future holds.
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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.