Rett Girl http://rettgirl.org resources for facing Rett Syndrome Fri, 12 Feb 2010 15:06:36 +0000 http://wordpress.org/?v=2.8.3 en hourly 1 Seizure Tracker http://rettgirl.org/2010/02/seizure-tracker/ http://rettgirl.org/2010/02/seizure-tracker/#comments Fri, 12 Feb 2010 15:04:23 +0000 admin http://rettgirl.org/?p=1340
If your child suffers with seizures, this site will be SO helpful!!
It is quick to use; it remembers the symptoms that your child had in previous seizures, the report graphs offer some great perspectives and correlations.  It can even download to your Internet-access cell phone for portability. You can also email the reports directly to your child’s doctors and there is a  great medication log to help keep you organized.
The best part is that it’s FREE. ]]> http://rettgirl.org/2010/02/seizure-tracker/feed/ 0 My Pal Violet or Scout(for boys) by Leap Frog http://rettgirl.org/2010/01/my-pal-violet/ http://rettgirl.org/2010/01/my-pal-violet/#comments Sun, 24 Jan 2010 21:42:33 +0000 admin http://rettgirl.org/?p=1336

Elayna absolutely loves this toy! You connect it to the computer and teach it to spell their name say there name. You can also program their favorite color, food, and animal and it sings songs with this information. It also plays classical good night melodies. It says “Good Night Elayna”, “I love [...]]]>

Submitted by: Kristina Beserra

Elayna absolutely loves this toy! You connect it to the computer and teach it to spell their name say there name. You can also program their favorite color, food, and animal and it sings songs with this information. It also plays classical good night melodies. It says “Good Night Elayna”, “I love you Elayna.” The look on her face when it first said her name was classic. It is worth it to get it if my girl loves it I know yours will too! It is so hard to find something to interest her. ]]> http://rettgirl.org/2010/01/my-pal-violet/feed/ 0 The Cure http://rettgirl.org/2010/01/the-cure/ http://rettgirl.org/2010/01/the-cure/#comments Wed, 13 Jan 2010 16:51:15 +0000 admin http://rettgirl.org/?p=1331

At 15 months old, Megan Crowley was diagnosed with Pompe disease, a rare genetic disorder that was likely to reduce her life span to five years at most. Her five-month-old brother, Patrick, shared the same disease and its [...]]]>

The Cure: How a Father Raised $100 Million–and Bucked the Medical Establishment–in a Quest to Save His Children

At 15 months old, Megan Crowley was diagnosed with Pompe disease, a rare genetic disorder that was likely to reduce her life span to five years at most. Her five-month-old brother, Patrick, shared the same disease and its crippling progression. Their father, John Crowley, a freshly minted Harvard MBA graduate, was determined to use his brains and connections to find a cure. He started a family foundation to fund research on Pompe disease and eventually headed a biomedical start-up company with a promising approach. Ironically, the more involved he got in efforts to find a cure, the slimmer the prospects were for his own children as hard business decisions and conflict-of-interest questions thwarted his efforts. Blocked from getting his children into clinical trials that could prolong their lives, and watching them grow weaker and weaker, Crowley concedes that he was occasionally tempted to simply steal the precious drugs. But he pressed ahead. Anand, Pulitzer Prize-winning reporter with the Wall Street Journal, delivers a detailed and heart-wrenching account of a father’s extraordinary efforts to save his children and find a cure for a debilitating and life-threatening disease. ]]> http://rettgirl.org/2010/01/the-cure/feed/ 0 Kiddyloo Toilet Seat Reducer http://rettgirl.org/2010/01/kiddyloo/ http://rettgirl.org/2010/01/kiddyloo/#comments Wed, 13 Jan 2010 16:31:17 +0000 admin http://rettgirl.org/?p=1326

The Kiddyloo is perfect for aiding in toilet training. It lets the child use the household toilets. The Kiddyloo is very comfortable and its enveloping shape reassures the child. A strap could even be added for additional support if your child needed. ]]> http://rettgirl.org/2010/01/kiddyloo/feed/ 0 Tissue Art http://rettgirl.org/2009/12/tissue-art/ http://rettgirl.org/2009/12/tissue-art/#comments Fri, 04 Dec 2009 19:55:51 +0000 admin http://rettgirl.org/?p=1321

Emma loves the crinkly paper and will actually grasp it.  You peel away different sections and then she sticks the paper to it.  Not the greatest but she did seem to enjoy it. ]]>

Submitted by: Kelly Shubert

Emma loves the crinkly paper and will actually grasp it.  You peel away different sections and then she sticks the paper to it.  Not the greatest but she did seem to enjoy it. ]]> http://rettgirl.org/2009/12/tissue-art/feed/ 0 Ocean Waves Music CD http://rettgirl.org/2009/12/ocean-waves-music-cd/ http://rettgirl.org/2009/12/ocean-waves-music-cd/#comments Fri, 04 Dec 2009 19:48:07 +0000 admin http://rettgirl.org/?p=1317

Great for inducing calmness and sleep. ]]>

Submitted by: Kelly Shubert

Great for inducing calmness and sleep. ]]> http://rettgirl.org/2009/12/ocean-waves-music-cd/feed/ 0 Rainbow in My Room http://rettgirl.org/2009/12/rainbow/ http://rettgirl.org/2009/12/rainbow/#comments Fri, 04 Dec 2009 19:43:34 +0000 admin http://rettgirl.org/?p=1313 Amazing rainbor projector; Projects rainbow across the walls and ceiling Turns on with a wave of your hand! Uses Multi-colord LEDs Includes bonus window prism disk for real daytime rainbows Jack for optional AC adapter ]]>

Submitted by: Kelly Shubert

  • Amazing rainbor projector; Projects rainbow across the walls and ceiling
  • Turns on with a wave of your hand!
  • Uses Multi-colord LEDs
  • Includes bonus window prism disk for real daytime rainbows
  • Jack for optional AC adapter
    • ]]> http://rettgirl.org/2009/12/rainbow/feed/ 0     Super Enormous Play Tunnel http://rettgirl.org/2009/12/tunnel/ http://rettgirl.org/2009/12/tunnel/#comments Fri, 04 Dec 2009 19:38:09 +0000 admin http://rettgirl.org/?p=1309

    Great for girls who may not walk but scoot or crawl, large enough for adults to fit too, great sensory exercise ]]>

    Submitted by: Kelly Shubert

    Great for girls who may not walk but scoot or crawl, large enough for adults to fit too, great sensory exercise ]]> http://rettgirl.org/2009/12/tunnel/feed/ 0 Huge Self Inking Stamp http://rettgirl.org/2009/12/stamp/ http://rettgirl.org/2009/12/stamp/#comments Fri, 04 Dec 2009 19:09:35 +0000 admin http://rettgirl.org/?p=1301

    We got one with  her name that she uses at school to put her name on things and then we got one that says “Love, Emma” so she can sign her cards.  I got the biggest one I could find so all she had to do was put her hand on it.  [...]]]>

    Submitted by: Kelly Shubert

    We got one with  her name that she uses at school to put her name on things and then we got one that says “Love, Emma” so she can sign her cards.  I got the biggest one I could find so all she had to do was put her hand on it.  They are customizable and you can design it right online.  We’ve had ours for two years and the ink is still good. ]]> http://rettgirl.org/2009/12/stamp/feed/ 0 Voice Recordable Teddy Bears http://rettgirl.org/2009/12/voice-recordable-teddy-bears/ http://rettgirl.org/2009/12/voice-recordable-teddy-bears/#comments Fri, 04 Dec 2009 19:04:25 +0000 admin http://rettgirl.org/?p=1297

    Record a message for your child or record part  of their favorite song (Emma’s favorite: Jonas Bros) ]]>

    Submitted by: Kelly Shubert

    Record a message for your child or record part  of their favorite song (Emma’s favorite: Jonas Bros) ]]> http://rettgirl.org/2009/12/voice-recordable-teddy-bears/feed/ 0