- Posted February 9, 2013 by
South River, New Jersey
Disabled little girl needs a (handicapped accessible) bedroom fit for a princess
Our daughter, Kelly, was born November 3, 2005. After a year of missing milestones and having various problems, it was discovered she had Mitchondrial disease, Leigh's Syndrome. The doctors at Children's Hospital of Philadelphia gave a prognosis of a year, at best. Since that diagnosis, she has gone through multiple hospital visits per year and now has a feeding tube and tracheotomy. Kelly depends on a ventilator to sustain her breathing. Oxygen supplements her breathing as needed and she receives her feeding at night via the g-tube. Kelly also developed a seizure disorder, which causes her to suffer from several seizures per day. Kelly requires 24 hour a day nursing care and because of the care provided by her nurses since 24 hours a day was approved, she has managed to stay out of the hospital, with the exception of one g-tube replacement surgery and displacement after Hurricane Sandy. Against all odds, Kelly has outlived the expectations of all of her doctors. Many of her doctors had given up hope and felt there was nothing that could be done, but they were wrong.
Kelly's first major surgery was her feeding tube. Prior to that, she did not eat well and frequently vomited. Her doctor warned us that there would be a chance that Kelly would not make it through the surgery. She made it through without a problem and was litterally a different child. Her appearance alone was significantly changed as she received her nutrition through the g-tube and she appeared to be much healthier. It was a difficult decision to get Kelly a tracheotomy, but after much discussion with her doctors, we decided to go that route. Kelly had been having breathing problems and was on a CPAP mask to assist her. This also was a life altering procedure, as it solved many of her immediate issues that were causing her distress.
When Kelly was born, we lived in Beachwood, NJ in our own home. My wife, Sue, had to leave work early in her pregnancy and did not return to work after Kelly was born. That is when our financial problems began. We eventually started using credit cards to help pay for expenses due to the reduced income and even dipped into our home equity. In July 2008, we managed to sell our home. After having to pay off the mortgage and the home equity, we only had a few thousand dollars left over. We then moved into Sue's grandparent's home. They both had passed away over the years before we moved in, and my in-laws have been gracious enough to allow us to live there rent free since.
Kelly is now 7 years old and has been growing like crazy. She is sleeping in the crib that was originally my son's when he was born in 2002. We don't have the money for a regular bed for her and if we did, there's no room for it. With her head near the top of the bed, her feet are almost touching the end of the bed. She has the smallest bedroom in the house and with her equipment, there is very little room to move. She has a ventilator, oxygen concentrator, a coughalator, suction, pulseoxymeter and a marine battery for backup. There's also a shelving unit that contains all of her needed supplies. Add in a recliner for the nurses and a dresser for Kelly's clothes and it's cramped.
In order to bring Kelly to her wheelchair so she can go to school in her bus, she has to be carried down 7 steps. Kelly is over 50 pounds and although I can handle it, it's difficult for my wife to do on the days I'm at work. It's also dangerous due to the fact that we're going down the stairs. Sue has already fallen once with Kelly while going down the stairs, but both of them were ok. Kelly is on a regiment of medicine that she receives almost every hour of the day. In order to prepare the medications, the nurse has to leave the room and go to the kitchen. Kelly's medications take up a large section of the kitchen counter and some are refrigerated. While the nurse is getting the medications ready, Kelly is unattended. Although she's on equipment that will alert if there's a problem, Kelly could potentially have problems that aren't detected by her ventilator or pulse ox. For bathing, Kelly is carried from her crib to the bathroom, which is the average sized bathroom for a 1950's era split-level home, then she is placed in an old bathchair we have. The nurse has to kneel down at the side of the bathtub and wash her. All this lifting and carrying is dangerous for Kelly and is bad for the backs of myself, Sue and the nurses.
This leads me to what we need. In reality, the number one thing that Kelly needs is a new bedroom. I've given it a lot of thought and if we had money, or the credit, I would want a handicapped accessible bedroom built onto the back of our home, with entry ways large enough for a wheelchair, and a bedroom that has a kitchenette so that her medication can be prepared in the same room as her. The bedroom would also need to have it's own accessible bathroom designed so Kelly could be placed into a bathchair, then wheeled into the bathroom to be bathed. Since our home was built in the 1950's, it was not built for demands a modern household has on electricity. Add in all the power that Kelly's equipment uses, and the situation is worse. We have frequently had circuits trip if too many of Kelly's equipment is running at the same time. Any new addition would need to be powered appropriately for Kelly's equipment.
The other immediate need we have is for a home generator, preferably a natural gas powered generator, because as we saw during the recent hurricane, access to gasoline could be difficult during a power outage. We currently have a small portable generator. During Hurricane Sandy, our generator lasted through the night, but in the morning we had to have Kelly transported to the emergency room. If we had a home generator that connected directly to our home, we could keep Kelly at home, as her equipment would remain powered and our refrigerator would have power so her medicine could be stored. Going to the hospital is difficult, as her ventilator has to be prepared to be transported with her and her medications need to be brought, as she is on a lot of medications that the hospital pharmacy does not keep in stock. Much of it needs to be specially compounded just for Kelly. I also have an obligation to work, so taking off of work so I can be with Kelly and Sue can be difficult. My son is 10 years old and in a power outage that requires Kelly to be transported to the hospital during, we also have to get him to a family member so they can take care of him in our absence.
I am writing this iReport in the hopes that perhaps there are kind folks that could help us make our home safer and more comfortable for our little princess. As it stands, we are stuck, unable to give Kelly what she really needs and although we are getting by, she deserves more than that.
You can read more about Kelly and follow her on Facebook: http://www.facebook.com/pages/Kisses-for-Kelly/335735789845841