Dr. Appointment Photo

Here is a photo of William and Nurse Mels at the University of Chicago!

Sitting Progress

Look no hands!!!

Today in physical therapy William sat unsupported for a maximum of 15 seconds!!

(In case you are wondering what he is so focused on...he is watching his Sesame Street!)

Where There's A Will There's A Cure

For those you that follow our Blog, but are not on facebook, we have some announcements!

We have founded Where There's A Will There's A Cure!

Where There's A Will There's A Cure is an all volunteer not-for-profit 501(c)(3)
charitable organization and its purpose is to raise funds to find a cure for
Myotubular Myopathy (MTM).

We have a facebook page and are working toward launching our website very soon!!

And the Chicago Area Kickoff Party information is shown below!


Chicago Area Kickoff Party Fundraiser

• • Saturday, November 17, 2012
  • 7:00pm until 10:00pm in CST

• South Branch Tavern & Grille 100 South Wacker Drive Chicago, IL Event Hosted by University of Illinois Kappa Sigma Alumni $60 per person including three hours of open bar and appetizers. To get your tickets online please go to: http://southbranch.hastickets.com/eventinfo.aspx?eventId=429 For more info please contact Tom Kantas at thomaskantas@yahoo.com or at (708) 699-2469

Getting easier

William is doing well.  He is very happy to be at home with his family.

Thank you to everyone that supported us through the last couple of months.  We really appreciate it.


Here are some photos to illustrate the machines and other items we are using to keep William healthy.

Ventilator

Oxygen

Cough Assist 

Suction Machine

Humidity Trach Trial

Chest Therapy Vest

Pulse Ox

William!!!

Feeding Pump

Medical Suppies

Cabinet with more drawers

Medical Supplies

Cabinet

Best Buddies

Monthly Medical Supply Order

Here is a pic of William's monthly supplies (excluding O2 tanks). Thankfully our night nurse is an organizational specialist! (we really like her so far)

After 46 days, William is home!

Hand washing station

William will be coming home soon. Check out our new hand washing station and paper towel dispenser.

Frustrated

It is time to get William home. The family is getting frustrated with the current situation.

Hopefully we can bring him back home next week.

Hair Cut at AHK

Yesterday Uncle PJ and Aunt Megan visited William at Almost Home Kids and helped us give him a much needed hair cut!!

Things seem to be moving along. William is well, nursing has been approve, we continue to work on our training and the electrician installed the dedicated circuits in our house (both upstairs and down)!