Archive for the ‘ Health ’ Category

A Little Girl Gets A Second Chance At Childhood

Wednesday, July 16th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Kinsey Saleh was like any other feisty 5-year old girl who liked playing with her friends after school and eating ice cream. However, Kinsey’s mother, Nadine Morsi, said she knew “something was wrong” when Kinsey started experiencing shortness of breath, fatigue, decreased energy and unexplained bruising. When Kinsey complained of joint pain in her knees, Morsi insisted on a blood test. Both the doctor and Morsi were shocked when the test revealed Kinsey had developed a rare case of end-stage kidney failure. Kinsey’s condition was so critical, doctors feared the 5 year-old would suffer from a stroke or go into cardiac arrest.

Instead of playdates and ice cream, Kinsey’s childhood afternoons consisted of doctor’s appointments and dialysis. Kinsey needed a kidney transplant and was put on a waiting list. Kinsey’s mother, while a perfect match, was unable to donate due to congenital clotting disorder that made surgery risky. “I felt helpless,” Morsi said.

“I became a special needs mom overnight,” Morsi said. As a pediatric occupational therapist for the New York City Department of Education, Morsi was aware of the assistance her child could receive. Kinsey was able to attend school with the assistance of a full-time health paraprofessional.

Morsi admitted to wanting to keep Kinsey’s diagnosis a secret. But a close friend insisted Morsi share their desperate search for a kidney donor. Kinsey’s story was shared throughout Facebook and she quickly captured the attention of local media.

Morsi has used her experience to raise awareness and help others. Every day 13 people die waiting for a kidney. “We can all live on one kidney…please share your spare if you can,” Morsi urges.

Last month, nearly six months after her diagnosis, Kinsey received a kidney transplant. She is doing well and is gearing up for the 1st grade in September (without any special assistance). Kinsey can spend the remainder of the summer with outings to the park and the sweet promise of ice cream. Morsi is extremely grateful that her daughter has been given a second chance at a normal childhood. She recently shared: Every single day is truly a gift. Not a day goes by that Kinsey’s donor is not in our hearts for allowing her to be a kid again.

Keep up with Kinsey and her mom via Facebook - Kidney for Kinsey.

 

Catch up with my last post: How Not To Handle a Public Meltdown

And from my other blog:

Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor
Baby Care Basics: Choosing the Right Doctor

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A New Bike Built For Kids With Special Needs

Wednesday, June 25th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Jyrobike is the World’s First Auto Balance Bicycle that features a patented Control Hub in the front wheel that uses gyroscopic technology to keep riders upright, even when they tip or wobble.

Riding a bike has not come easily for my son, Norrin. After he was diagnosed with autism, we learned that he didn’t have the strength or the coordination to pedal. For years we’ve worked with therapists trying to build up Norrin’s muscle strength and teaching him how to balance. We’ve bought tricycles, big wheels and even scooters – hoping Norrin would be able to master one. Eventually Norrin learned to pedal but he still lacked the focus, tired easily and had difficulty maintaining balance.

Last spring, we bought Norrin his first real bike. And while he showed an interest in riding it, he still needed a lot of work. Even with the training wheels he still had trouble with balance and had difficulty turning. Now that bike is too small and we’re wondering whether or not we should buy another. Norrin will still need training wheels and it may be years before he learns to balance independently.

That’s when I heard about the kickstarter campaign for Jyrobike I knew I had to share it! It’s the ideal solution for kids like mine. “Jyrobike is built on the core principle that bikes become inherently stable at higher speeds because the faster the wheels spin, the more balanced it becomes.” While originally designed for 3 – 8 year olds, “one of [the company's] stretch goal rewards will be very popular with parents of older children.” There are also plans to launch an adult product.

Jyrobike will change the lives of so many families with special needs, especially kids with autism. It allows children to learn to ride a bicycle with confidence and a sense of security. It will provide the physical activity they need to maintain their health and it’s a social activity that can be shared with family and friends. Bike riding is a skill that can lead to a more independent life.

To learn more about Jyrobike visit http://www.jyrobike.com.

Catch up with last week’s post: How Not To Handle a Public Meltdown

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Six Years Later, I Am Still Learning To Accept Autism

Wednesday, June 11th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

I will never forget the day my son, Norrin, was diagnosed with autism. The days, weeks and months that followed I felt this overwhelming sense of loss and sadness. At the time of Norrin’s diagnosis he had no speech; he couldn’t point his finger and lacked imaginative play skills. That was six years ago.  Norrin has had made significant progress. We’ve celebrated many milestones since then because we’ve seen how hard he’s worked to achieve the things that come so naturally to other children his age.

Norrin is now 8 years old and has been autistic for most of his life. The constant feelings loss and sadness have long subsided. I don’t wish to cure Norrin’s autism and I don’t believe it’s the worst thing that could have happened.

Autism has become part of our every day. It’s so common to us that I don’t even think about it. And since Norrin is my only child, I have no idea what it’s like to raise a “typical” kid. I focus on the things Norrin can do rather than the things that he can’t. And I tell myself that he will meet those milestones in his own time.

We were on vacation last week. We went to Walt Disney World – the Most Magical Place on Earth. It’s the place most kids dream about. I watched as other families waited on line, as kids excitedly pointed to rides wanting to get on. They wanted to watch the parade, posed for pictures and looked like they were having fun. And while other kids were having fun, Norrin – after the second ride – had a complete meltdown. He started crying uncontrollably and said he wanted to go back to the hotel over and over again. I tried to console him but nothing I said soothed, he was ready to leave.

In that moment, I was reminded of autism. And all those feelings of loss crept in.

As we were walking out of the park, I felt defeated and disappointed. It had been years since we had a vacation and I wanted Norrin to have fun. I wished that we were like every other family in the park, the ones you see in the commercial. I know I shouldn’t compare but sometimes it’s hard not to. “Why does something fun have to be so hard?” I wondered.

We returned to the hotel, changed into our bathing suits and went down to the pool. We spent the next few hours splashing, swimming and having fun. Norrin was having a blast swimming under water and practicing floating on his back. The pool was small enough that I could sit on a nearby lounge chair  and watch. It was a luxury and I appreciated the moment. Hours earlier at the park, I held his hand tightly, too scared to let go.

I love my son and I have accepted autism. Six years ago, I couldn’t see beyond his diagnosis. I couldn’t have imagined the progress he’s made. We have good days and not so good days. Days when I can forget autism exists and moments when autism is overwhelming. And during those moments, I have to accept autism all over again.

Catch up with last week’s post: Father and Son Bonding When Your Son Has Autism

Understanding Autism: Sensory Issues
Understanding Autism: Sensory Issues
Understanding Autism: Sensory Issues

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Nighttime Potty Training: UPDATE

Wednesday, May 14th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Back in January, I shared that we were about to begin Nighttime Potty Training and I thought I’d give you an update.

Yeah. We’re not done yet. Not. Even. Close.

I’m going to be completely honest. My husband and I are at odds about it. I am ready to quit and just go back to diapers/Pull-Ups at night. And my husband is determined we stick to it.

I knew that it was going to take time and that I needed to be patient, but I am exhausted. I have washed sheets, blankets and pajamas almost every day since January. We are going on vacation in a few weeks. Is nighttime potty training something I want to deal with while at the most magical place on earth?

We’ve tried rewards, alarms, limiting liquids close to bedtime and waking up in the middle of the night. He’s just not getting it. Day time potty training and nighttime potty are two totally different things. And being successful during the day, isn’t always a guarantee for nighttime dryness. Going back to diapers at night doesn’t mean I’m giving up on my son. It just means I’m giving him more time.

Would love to hear your nighttime potty training updates!

From my other blog:

 

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Birdhouse For Autism: An App To Make Autism Parents Life Easier

Wednesday, April 30th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.


I bet you have a calendar where you write everything down. Phonebooks, memo pads, notebooks or scraps of paper with scribble on it. When you’re an autism parent, your life is all about keeping track of progress, meltdowns, bowel movements and sleep cycles. You have countless appointments and therapists numbers to remember. I know I do and no matter how organized I try to be, I still don’t have everything in one place. As a mom constantly on the go, it’s impossible to have Norrin’s information accessible to me at all times. And to be really honest, I can barely remember  the  passcode to  my iPhone –  I need everything written down or else I’ll forget.

I just downloaded Birdhouse for Autism; it’s an app that “keep[s] a running, searchable log of your child’s daily activities and behaviors, so that you can figure out what’s working and what needs to be changed.” The app was created by autism parents, Ben Chutz and Dani Gillman.

“We needed a better way to manage and organize all this stuff, and it was apparent to us that many, many other families needed a better way as well,” said Ben.

Unlike any other app, Birdhouse for Autism you can monitor your child’s day-to-day progress. Accessible via iPhone, Android or the web, parents can view and track their child’s sleep cycles, diet, bowl movement, moods, medications and any other information you’d like to note. You can also keep track of your therapists information, including how long they have worked with your child.

“In its current version, Birdhouse works best for families who are already in the habit of keeping some type of notes on their child’s day to day progress, or who have something that they are paying special attention to in their child. For example, one family was able to get a referral to a neurologist from her child’s pediatrician by tracking her sleep cycles. Another family used Birdhouse with their son’s special education teacher to build a case for the IEP meeting that her son be relocated to a classroom better designed to suit his needs.”

There are two types of memberships: free and premium. You’ll need to create an account on a full size (desktop/laptop) browser prior too using Birdhouse app. The free membership only allows you to log/track the current day but weekly progress must be viewed via web. The premium membership allows you to have all your child’s information on your phone and allows you to share the information with up to 3 other individuals. What makes premium membership especially unique is that it’s a “name your own price.” Families pay either $1 to $20 per month for the Birdhouse for Autism app.

I am excited about the Birdhouse for Autism app because I’ve been thinking about medication for Norrin. I know the app will make it easier to monitor. All of my information will be neatly and safely stored in one place that I will be able to access any time I need it.

Have you used the Birdhouse for Autism app? Would love to hear what you use it for?

From my other blog:

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