I like this idea and have tried it before. I think we are more focused on what we want and our goals when we say them out loud , share them with others or even write them down.
Read more on What’s Your Word For 2018?…
I like this idea and have tried it before. I think we are more focused on what we want and our goals when we say them out loud , share them with others or even write them down.
Read more on What’s Your Word For 2018?…
We are caretakers, caregivers, listeners and doers. It is not often that we get to be alone and enjoy it. Most of my alone time is spent folding laundry or sorting it! I have created a list of suggested ideas of things to do with a little alone time. I’m starting simple/small and keeping costs low so that this is attainable for all of us.
Read more on 8 Things For Just YOU To Do ALONE in 2018…
I am not even sure I will even try to stay up until Midnight this year but I will be sure to still have some fun! Here are some ideas for you and your family to bring in the New Year.
Read more on Ideas For New Years Eve & Day With Your Kids…
While Winter break can be a great time for many, and I do look forward to the lack of schedule, many with special needs do not enjoy the change.
I’ve created a list of some ideas to get through the holiday break. Not only are holidays mixed into 2 weeks off, but other factors like travel, guests and new activities are added to our lives.
Read more on 7 Tips To Get Through The Holiday Break ( With Some Mom Truths Added)…
Regaining His Strength
Eight-year-old Bryce Conner, who has a neurologic disorder that causes progressive muscle weakness, worked with Michelle Froede, PT, DPT, during a weekly visit to Children’s Hospital of Richmond at VCU’s Brook Road Campus this fall.
(Photo by Doug Buerlein)
He went from a normal kid to functioning like a 6-month-old,” Jody Conner recalled of her then 4-year-old son, Bryce. “It was
devastating.”
In September 2013, Bryce, who up to
that point had been developing typically, began to tire easily and have ankle and leg weakness. Jody took Bryce to his pediatrician who was concerned he was showing signs of brain damage. e doctor suggested Bryce have an MRI and referred him to Children’s Hospital of Richmond at VCU (CHoR). e MRI and genetic testing a few months later con rmed Bryce had Leigh’s disease, a rare neurodegenerative condition that creates defects in the body’s mitochondria, part of
the cells that turns nutrients into energy, and causes rapid loss of motor and cognitive skills. e disease, which has no cure, often becomes apparent after a viral infection. e severity
of symptoms depends on the percentage of a ected mitochondria, which in Bryce’s case was 88%.
“He couldn’t answer a simple yes or
no question,” said Jody, who also carries
the Leigh’s disease gene but does not have symptoms. “He choked on food, couldn’t sit up and began having seizures.”
As Bryce worked to regain his strength,
he started aquatic therapy at CHoR’s Bon
Air erapy Center. e warm water helped relax his tight muscles so he could focus
on relearning skills like rolling over during early sessions with his physical therapist, Michelle Froede, PT, DPT. He also worked with occupational and speech therapists to work on strengthening his throat muscles so he could eat without choking and improve his speech. At the same time, he started taking regular doses of vitamins, which boosted his immune system and helped him regain his cognitive abilities.
Jody said she appreciated how Bryce’s therapists communicated to share and support Bryce’s therapy goals as well as coordinated with other CHoR specialists and clinics as needed. (Bryce is followed by specialists from cardiology, ophthalmology and the Spasticity
Clinic at CHoR.) Over the years, he has received botox to relax his leg muscles and in September 2016 underwent heel cord lengthening and hamstring release surgery, which has allowed him to get out of his wheelchair and use a walker more consistently.
“Bryce is a hard worker,” said Michelle, “and so much fun to work with. He’s also super competitive so I try to make therapy fun by nding something cool to play [like his favorite board game] as a reward for his work.”
Two years ago, Michelle said Bryce could barely stand without assistance. In May his wheelchair was converted to have electric wheels and a hand-held joystick to make mobility easier and less tiring. Now Bryce is moving around the hospital with a walker and minimal assistance from Michelle. She wants to continue helping Bryce improve his endurance so he can get around as independently as possible, especially at his Chester eld County school where he started second grade this fall.
“Now he has energy for education and socialization,” Jody said of how the enhanced wheelchair has made being with friends and going to school easier for Bryce. “He tears up and down the street in his wheelchair while the other kids are on their bikes. It’s a huge reason he’s come so far this year.”
Now that he’s in school full-time, Bryce
is adjusting his therapy schedule at CHoR. Although he’s taking a break from speech and occupational therapy, he visits CHoR’s Brook Road Campus every week for physical therapy with Michelle. On any given Monday afternoon, he can be found walking the halls, trying to beat Michelle at Candyland, and making her laugh with his puns and jokes.
Bryce also continues his therapies at home and has gotten involved in a variety of adaptive sports including karate, archery, swimming, bicycling and baseball. Like many 8-year-old boys, Bryce also loves video games and recently had his own character created in his favorite game, Plants vs. Zombies, as part of a Make- A-Wish Foundation wish. He said he likes coming to CHoR but was more interested in talking about his Halloween costume – Foxy,
a character from a video game – during a visit this fall.
“Bryce would not have the abilities he has without his therapy,” said Jody. “I can’t wrap my head around how far he’s come. I want to thank the people who have given my son his function back.”
Read more on Regaining His Strength…
I remember the day my son was born, not even being married to a pediatrician helped my cluelessness . He had difficulty breathing, he was delivered weeks earlier than he should have been, he needed to be transferred to a level 1 hospital and still, all I said, was ,”isn’t he cute”?
Read more on To The Parent Who Just “Joined” This Special Needs “Club”…
Please join us for a fun night of gaming while we raise funds to help the children of the community and the Miracle League of Richmond to offer accessible recreational opportunities for children with special needs so that they can enjoy America’s pastime as a member of an organized baseball league.
Read more on Diamonds ‘N Dice Casino Night…
Please join Full Circle Grief Center’s Junior Board for an entertaining night to kick off a year-long celebration of Full Circle’s 10th Anniversary. Adrian H. Wood, PhD. is the author of Tales of an Educated Debutante and full-time wife and mother of four, one with special needs. She will share her personal glimpses of everyday life where satire meets truth and despair meets joy. This educated debutante escapes the laundry and finds true meaning in graceful transparency. Known for keeping it real, Adrian’s reflection on the life we envisioned versus our present reality as well as her spin on the day-to-day tasks involved with ‘adulting’ is sure to have the audience laughing in their seats. The evening also includes a Meet and Greet Wine and Dessert Reception with Adrian, an audience Q&A session with Adrian, and the opportunity to learn more about Full Circle. Full Circle is Richmond’s comprehensive grief resource center providing professional grief support services to children, adults, and families struggling with a death of a loved on. Full Circle believes in the power of groups, the benefit of creative expression, the value of a family approach, and the importance of providing services to all individuals, regardless of the ability to pay. Don’t miss out on your chance to join us for this special night. Get your tickets today at www.fullcirclegc.org.
Read more on The Joys In A Messy Life. An Evening With Adrian Wood PhD…
Editor’s Note: I first published this 6 years ago and I wish that I could tell you that a tremendous amount has changed for the better, but I can’t. I can tell you that some things have changed and some of it is better, and that is enough. Being a parent of a special needs child, you learn and appreciate that every little thing matters and you learn to adjust. Marky read this before I published and looked at me with a smile and said, “is this about me?” Maybe one day, he will write his own. ~Carissa Dec 2017
Hi Friends & Family,
Read more on Our Annual Holiday Letter “From” Marky…
Dave & Buster’s Richmond is having their first Sensory Sunday! This is such great news, it is my hope that is is well attended and more get on the calendar!
For this event, TV & music will be off and game volume will be down. There are a few different options to choose from, all info is listed below. There will be options for games and food or just one . If you opt for the food option, you will need to purchase through the ticket link provided. If not, you can just show up.
Read more on Sensory Sunday – Dave & Buster’s Richmond, January 21, 2018…