Saturday, March 3, 2012


Ayden Jane has been healthy for 2 full weeks!  I have fabulous pictures of her when she was a mess with sinus infection.  Two weeks into the antibiotics working well and then at 3 weeks.  They are astounding!!!  Sorry, not gonna post 'em though as they are underwear only pictures.  I did share them with her doctors and all are amazed that her entire body composition could change so dramatically in just 3 weeks.

It is like Ayden Jane is back.  I love this kid!

We continue to make rest mandatory, but are allowing her to go wide open during waking hours.  She is getting her strength and endurance back which is fun to see.  She will still have to work hard (code for play hard) to get her lean muscle back to where it was and get her body fat back to optimal, but barring any further illness it will come in time.  She loves to play hard and starts every day asking what we can do that's fun.  To her fun is active and busy and go, go, go...  Plenty of that in this house!

So what have I learned from this winter?  Aside from the medical stuff... I realize that there will always be times where I feel isolated as the parent of a special needs child.  I mean, yea, AJ had an upper respiratory infection... so?  Kids get sick, it's a part of growing up...  Ayden Jane has gotten sick in the past a kicked it no problem.  Then came this one.  So where do you go to figure out the answers?  We are blessed with great Drs. who really care about Ayden Jane and are willing to think about what is going on from all angles.  They listen to me and trust my observations and instincts about how she is really doing.  With their help we will hopefully handle any future infections better medically.

It is a far cry though, from chatting with your friends about how things are going.  You know, joking about the sleepless nights... that are almost looked back on as just a part of parenting.  The worry that she just won't be able to conquer it.  Not knowing exactly what we were dealing with because it just looks different in her.  Worrying about what the rampant inflammation was doing inside her and the cascade of things it was throwing off.  The 'real' world gets shut out and no one really understands our little world.

So glad to rejoin the outside world and hopefully I will catch up with what you've been doing all winter one day soon!


  1. I completely understand. People think it's just the "usual" stuff, but it's anything but with our kids. There are so very many ways that it throws them off and it's hard to recover when they just keep getting sick and it takes so long to get back to their "normal." We get it!!!

  2. Hi Janet,

    My name is Shari Smith. I was referred to your blog by Leah Pittman.

  3. I am a professional advocate. I have a company here in South Carolina called LEARN (LowCountry Educational Advocacy Rights Network) Although I am certainly no expert on Prader Willi Syndrome, I do have some experiences and resources which you may find helpful. I publish on facebook regularly and also provide information on my company's website.

    I enjoyed reading your blogs. Keep up the great work!
    Shari Smith
    CEO and CoFounder of LEARN