Site of Senses Project

founded 2007 by Table Innovations, Inc.

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Molly's Story

From Anne Winter, Service Coordinator, Marathon County Birth-3 Program:

August, 2011 -

Molly a beautiful 27-month-old girl, who is the first, and only,  child born to her parents.  She resides in a loving home with her parents and receives 24 hour per day nursing care.  

Molly was born with arthrogryposis, an orthopedic condition in which there is a fixation of the joints in a flexed or contracted position.  Additionally, she was born with several other genetic anomalies, including a club foot, a permanently dislocated hip( which cannot be surgically repaired), a fused jaw, an under-developed brain and a cortical visual impairment.  

In her short life, Molly has undergone 12 surgeries and many hospitalizations.  She has had surgeries to repair the club foot, to lengthen the tendons in the knees and ankles, to place blood ports (on 3occasions), ear-tube placement, a trach placement ( for breathing) and G-tube placement (for feeding.)   It is  also worth noting the Molly requires ventilator support, for 15 hours per day to maintain her breathing and is tube fed.  She is unable to suck, chew or swallow, as a result of the fused jaw.  Molly's physicians and therapists agree that she will never be able to sit, stand or walk independently.

Despite her medically fragile condition, Molly is making some developmental gains, which is, in my opinion, a result of the dedication and hard work of her loving family, therapists and nursing staff who tirelessly strive to provide stimulating experiences for Molly within her home environment. (Providing experiences outside of the home is very challenging, as Molly requires a large amount of equipment to support her breathing and other vital functions.)  On a recent visit to the home, Molly's mom reported that it is her desire for her daughter to "achieve the most she can achieve."   From the bottom of my heart, thank you so very much for considering Mollyfor an S.O.S.  The system would be "worth it's weight in gold" to this childand her family.

 

December, 2011 update from Molly's Mother

Molly LOVES the SOS!  She has learned to roll over onto her belly (her left side). She has actually started flipping herself back over this past week! I have a mirror hanging in there which she loves to look at and reaches for. I have now moved it to the other side to try to encourage her to roll to her right.  She absolutely loves the items with the beads hanging from them!! She catches her hand in them and really whips them around!  It's quite comical. She really enjoyed the little windchime, but it didn't hold up.

You had mentioned that it should be put in the same place all the time.  One night one of the nurses moved it to another room due to company here. Molly hated it!!  She wasn't even in it for 30 seconds and was crying and crying!  It took a couple of days, by starting over without the cover on, to calm her back down to tolerate being in there again. At that time we had just put the cover on a day or two before.

If you need any more info, please let me know, I would love to help in any way I can.

We are very grateful for this wonderful discovery tool!!!

 

April, 2012, another update from Molly's Mother

I am writing in reguards to the SOS that you made for Molly.  I feel she had great success with it!!  It helped her to learn to reach and to roll, along with discovering new things.  Unfortunately she has outgrown it and has become bored.  I am inquiring if you would prefer to get it back to pass along to another family who could make use of it, or if you would like the Birth 2 Three program, that worked with as well, to adopt it and make use of it as they see fit.

Again, thank you so much for giving us this opportunity to help our daughter with her awareness and activity.  I will be looking forward to your response.

 

 

 

A note from Table Innovations, Inc., the manufacturer of the Site of Senses and Wall of Senses devices -

All Site of Senses devices that are donated to families,  institutions, or agencies by our not for profit corporation or other funding provider such as KIWANIS clubs, are on loan. When the need is no longer there for the device, it may be returned to the manufacturer, who will refurbish it for free, and reissue it to another family or agency who can use it to help another child.

 

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