Not so great news

  • By mel106 · Posted August 8, 2012
  • 11 replies
  • I got some upsetting news today. Now that I've stopped crying, I decided to share it with you all. My son has an autoimmune deficiency called Bruton's (aka BTK aka Agammaglobulinemia). I talked about ...

New column: "My son, and his doctors"

  • By John2 · Posted August 3, 2012
  • 0 replies
  • From: John Novack, Communications Director, Inspire Dear members, I'm writing to share with you a new column, "My son, and his doctors" on-and-his-doctors/, by ...

Improving your child's sleep-wake cycle

  • By healthinmotion · Posted August 2, 2012
  • 0 replies
  • Sleep is a crucial factor in a child’s development, health, and lifestyle. It’s important to understand your child and notice how he functions through the day, what activities he engages in, and his daily ...

PEDD (Pancreatic Enzyme Deficiency Disease)

  • By BehcetsGirl · Posted July 29, 2012
  • 9 replies
  • What are the symptoms / diagnositics ...

Massage Therapy for Cerebral Palsy

  • By healthinmotion · Posted July 24, 2012
  • 7 replies
  • As you may know, cerebral palsy is an umbrella term which is used to cover a variety of different disorders. It’s something that differs from person to person, and influences all the functions of the ...

Let's Go Swimming...Maybe

  • By mel106 · Posted July 17, 2012
  • 2 replies
  • The Americans with Disabilities Act (ADA) outlines the rights of people with disabilities and forbids discrimination of any kind towards this group. In 2010, the Department of Justice (DOJ) sought to ...

Why can't I treat just one aspect of my child's condition?

  • By healthinmotion · Posted July 5, 2012
  • 20 replies
  • Whether a child has Down syndrome, cerebral palsy, acquired brain injury or stroke, every child is unique and has his own individual strengths and needs. While his symptoms may be similar to those generally ...

Keeping my JOY

  • By mel106 · Posted July 1, 2012
  • 8 replies
  • I have been thinking a lot about joy lately. JOY. That’s not a word used very often today. We talk about being happy or good. “Yeah, I’m good.” But joyous? Doesn’t the word ‘joyous’ evoke something different ...

A Little Humanity, please!

  • By mel106 · Posted June 21, 2012
  • 34 replies
  • When we hear “Medicaid” many imagine a lazy, non-working individual, sitting at home watching Jerry Springer and Maury. But the fact is, 70% of Medicaid spending goes towards people with disabilities ...

A Growing Girl

  • By mel106 · Posted June 20, 2012
  • 13 replies
  • I was having an e-mail conversation with a friend who also has a daughter with CP. I was telling her how my daughter is still so obsessed with Barney (right now it’s Barney’s Great Adventure) and Nick ...

Vanity & Botox

  • By mel106 · Posted June 18, 2012
  • 8 replies
  • I have a certain amount of vanity for my daughter. Okay, a tremendous amount! She’s got a beautiful face, gorgeous hair and a skin tone that the New Jersey Tan Mom would commit second degree murder for ...

ABA approved by Feds

  • By mel106 · Posted June 16, 2012
  • 0 replies
  • I came across this article and thought it would apply to many of you since I know there are many who use this form of therapy. Maybe now you won't have to pay out of pocket for it! Hope it helps! ...


  • By mel106 · Posted June 15, 2012
  • 10 replies
  • I got a gripe. I know, I know, for those of you who know me personally, it’s hard to imagine. But yep, I do. Some of you who read this will probably dislike me for some of what I’m about to say or maybe ...

Family Fun

  • By mel106 · Posted June 15, 2012
  • 0 replies
  • So we went on our first family vacation. I was very excited; maybe almost more so than my daughter, if that’s humanly possible. And now that I’m back, I see it wasn’t all perfect but I’m definitely glad ...


  • By 17sunshine · Posted June 12, 2012
  • 8 replies
  • Sorry I have been Mia!! I've been very sick, having a lot going on, having brain surgery tomorrow!! I wanted to let everyone know, I got into the scleroderma specialist before sept 4th they had a cancelation ...

Thoughts & Dreams

  • By mel106 · Posted June 9, 2012
  • 3 replies
  • I've often wondered what my daughter's thoughts look like. Are they pictures strung together like the symbols on her DynaVox (her communication device that's something like a tablet but a little bigger ...

Screaming to have a bowel movement....Suggestions please.

  • By mommyfighter · Posted June 9, 2012
  • 8 replies
  • Hi fellow moms Has anyone else experience this. For the last couple of month now Amaya has been screaming, crying her little heart out everytime she needs to have a BM. This started after I introduce ...

Captain's Log

  • By mel106 · Posted June 4, 2012
  • 3 replies
  • Do you have a medical log book for your kids? If not, you should seriously consider starting one today! I think this is my #1 mommy suggestion because it’s important for all kids – not just those that ...

Games Day

  • By mel106 · Posted June 1, 2012
  • 2 replies
  • Today was Games day at Mitchell Field in Nassau County and boy what a gorgeous day it was! There was no humidity, the sun was shining and a light breeze kept us happy while we waited our turn at each ...


  • By mel106 · Posted May 31, 2012
  • 12 replies
  • Today it is hitting me that I am part of another community I never asked to be in. My beautiful son-shine looks absolutely perfect but he is not. Not medically, anyway. He has PIDD. Primary Immunodeficiency ...

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