Family Seeks Transportation Grant Money For Daughter With Cerebral Palsy
by James Quinlan
I have my 10-year-old stepson with a manageable mental disability and a 20-month-old daughter who was recently diagnosed with diplegic cerebral palsy. I will tell you of how she came to have CP but first I want to tell you of the miracle and nightmare that happened first. It was Christmas Day 2009 around 10 pm and my wife Debbie and I had just gotten back from my mom's house for Christmas dinner. We decided to lie down and watch a movie together because our son had chosen to spend the night with grandma. We didn't complain. It was a peaceful night and we wanted to relax a little bit from all of the hustle and bustle of the day. We put a movie in to relax to. Shortly after, Debbie told me she felt a little crampy. I suggested that maybe a nice quiet warm bath might help to sooth her. She agreed but only an hour or so later. My wife was in the bath, or so I had thought for about an hour. Debbie ended up drawing a bath but was only into it for about 20 minutes before she went into full-blown contractions. I found out afterwards that she was lying on the bathroom floor for the better part of a half hour in pain not able to call for me to come help her. I had no idea what was going on when she finally made it to the living room and told me something wasn't right. I immediately got up off of the couch and took her to the hospital. At this point we are 2 hours home alone for the first time in what seemed like months and it is midnight. Our OB/GYN was 32 miles away and would have taken 45 minutes or longer to reach and there was no time for that, so we went to the nearest hospital and made it there in about 20 minutes. By this time, it was 12:20 am and we had just made it to the ER. I yelled for a nurse and wheelchair and they took my wife and me directly to the maternity ward. At 12:36 am our precious baby girl Brady was born. It was an intense 36 minutes that seemed to drag on forever. Brady came to us being full of life, screaming and crying. It was such a great triumph for us to hear our baby's voice for the first time, because we had had 5 miscarriages and a stillborn. An inexperienced nurse claimed that Brady had retracted and wasn't breathing. Once she declared this the hospital staff promptly intubated her 12 times in a 5 minutes period, cutting off her air supply. They didn't follow protocol and caused vocal chord trauma, throat swelling and throat bleeding. Brady was in life flight at around 1 or 1:30 am. That part is blurry to me because I was helping my wife cope with having another preterm baby, an episiotomy and a life flight all at the same time. Once Brady reached the children's hospital she was properly intubated and was on a ventilator for 10 days, not because her lungs were undeveloped but because her throat was bleeding and swollen almost shut. To further add to the distress of the situation the doctor came into the room and stated my wife was fully dilated and crowning, then walked right back out of the room with Brady being born face-first and still in the water bag. This traumatic experience shook us up considerably and caused the now diagnosed diplegic cerebral palsy. Brady was healthy at 3 pounds 2 ounces and 16 inches long. Now Brady is 20 months old and cannot walk, talk, or sit up on her own. She has what is called clonus and hypertonia and spastic muscle movements that accompany her CP. Think of clonus like Thumper from Bambi with his thumping foot but Brady can't control her thumping feet. The hypertonia means she has very rigid and tight leg muscles that prevent her from being able to stand flat-footed. When we support Brady, her legs automatically cross like scissors and she stands on her tippy toes. The hypertonia also creates a low muscle tone in her back making her very flimsy, thus not letting her sit up or walk or crawl. It makes playing with babies her own age very difficult because she can't communicate or keep up with the others mobility. Brady has learned to "Army Crawl" using her forearms to pull herself across the floor. Since the birth of Brady I worked up until March of 2011. I went from driving semi-trucks to an office job selling comic book art for a prestigious talent agency. Shortly after Brady started physical therapy it became apparent that I wouldn't be able to work any longer because we now have 2 kids with special needs and it is too much for one person to have to handle on their own. We recently had our 1993 Buick Skylark break down on us and the amount it would cost would not only cripple us financially but is also more than the car is worth. We live on a hill and winter is approaching us fast and we have no way of getting on and off the hill safely to get Brady to her appointments. We were hoping that the Buick would last long enough for us to afford a 4-wheel drive vehicle but that is now a lost dream. As of now Brady isn't on any medications because she isn't showing any signs of pain, yet. Once Brady is older and she starts growing more she will need to be on muscle relaxers and painkillers. We are not looking forward to that because that means her hips are starting to turn out of the sockets and dislocate and her muscles are too tight. I hate to even think of it. We have been discussing the use of leg braces to maybe help correct the scissor stand and her always being on her tippy toes. We receive SSI for our son and that is now paying the bills. My wife and I have applied for SSI for Brady as well to help with some of the financial burden but it really isn't enough to live on or to purchase a vehicle. We are ultimately looking for a vehicle or a grant so that we may get a reliable and safe vehicle to transport Brady back and forth to her much needed physical therapy appointments.
      Go to the Accessible.org Home page. 
|
