Bless Sage, spinal muscular atrophy

Sage Victoria Vardiman was born September 16, 2010. When she was 6mos old she was diagnosed with SMA type 1, Spinal Muscular Atrophy, the #1 genetic killer of infants. Type 1 being the poorest prognosis with an average life span of 2 years old.  SMA is basically a muscle atrophy over time resulting in loss of all muscle ability. At the age of 10mos she loss the ability to swallow, so she had a g-button placed (stomach feeding). At the age of 11 mos, Sage loss her ability to breathe on her own because the diaphram muscles had atrophied. At that time, myself and my husband decided to give our little angel life and we had her trached and put on a ventilator (life support). We could see in her eyes she had so much to give to the world. It wasn't her time to go.  Cognitively she is 110%.  So after spending 4mos in the hospital we finally brought her back home and found some really good home health nurses. She requires 24 hour care. Right now we have 3 nurses sharing 12 hour shifts, so myself and my husband do spend time at home away from work to help care for her. Sage is 5 now and striving like God wants her to. I feel she was given to us to take care of us. She definitely has given me a better outlook on life and my faith. She talks well and is very smart. Her older brother, Dane, who is 8 yrs old is her "super hero". And he adores her just the same. He's my little hero, too. He sacrifices a lot for a kid his age, including not having his parents at his basketball practices or games all the time and not being able to get out of the house a whole lot. She is completely physically dependent on us, like a new born baby. She can not stand, walk, sit up or turn over on her own. If she is not in her bed she is in her custom wheelchair. 
Now that she is 5, she is in need of some household changes to help with her daily activities.  She has a power wheelchair that is hard for her to move because of the carpet in the house, so we need to replace the carpet with hard floors/ceramic tile. She has a very light touch/pressure on her wheelchair joystick, so transforming carpet to hard floor will make it so much easier for the chair to roll for her. Also, now that she is a little girl, she needs privacy for her bath time. She lives in our living room downstairs and all her bath care is done in her bed. Unfortunately, the downstairs bathroom does not have a shower or tub. We are hoping to get a walk-in shower installed so we can wheel her in for a nice warm shower.  Her ramp/lift attached to her van we transport her in is in need of service/repair.  And we have some medical bills/expenses we are trying to cover.  These are just a few things she is in need of to help make daily care and activities smoother. We greatly appreciate any help from all our friends, family and strangers who find a special place in their heart for Sage.  God bless you.
Jane, Dermot, Dane and Sage Vardiman