Because my progress in medical based therapy wasn't significant enough I was placed on "monitored" P.T. and O.T. and CCS discontinued therapy altogether, "it is unethical to continue a treatment if progress is not notable."
When Arianna was about six years old, I saw on the local news that a Sacramento program was producing positive outcomes for severely disabled children. A local school was receiving it's MOVE-certification which takes at least six years for proper documentation of children’s progress. It was their third model site. The MOVE Program, founded by Linda Bidabe, had been utilized by the county for at least seven or eight years when I heard about it.
The MOVE Program’s information and details can be seen here. http://www.move-international.org
When I attended an IEP for Arianna after viewing the newscast, I noted and had placed in her IEP that " Parent would like Arianna to have Access to the MOVE Program." Aside from the fact that Yolo County didn't have it in their curriculum and many didn't know about it, the few who did know “didn’t believe in it.” I did some research about the program and discovered parents could attend a weekend training. I paid and scheduled training in Bakersfield CA on June 23-24, 2010. My boys were little at the time and it was difficult, but I knew life would be more difficult for Arianna if I didn't do this. My Husband and I loaded up the children and headed for Bakersfield. We stopped at various locations to change Arianna, utilizing a rest stop table covered by a blanket, a blanket on a grassy space outside a gas station with the police driving by . . . . I had few choices since at six years old, Arianna was too heavy for rest room changing tables. The back of our Suburban was loaded with her wheelchair and provisions for the trip, and we have no bench in the middle
Upon my return from the training, I requested that Arianna NOT do medical based Physical Therapy, no floor work please, and that sitting or standing with proper supports be worked into her curriculum. I learned in medical based P.T. that one must roll before crawling, crawl before sitting, stand before walking – great information for someone in rehabilitation who has already experienced movement. Try teaching movement to someone who has never experienced it; it’s very different! MOVE training starts where the person IS and focuses on what they need to learn to have a sense of independence. Teaching Ari to roll on the floor or prop herself on her elbows didn't help anything because she won’t be a baby forever. Sitting and standing are functional movements and teaching the joy of movement for independence is difficult. I asked if they could get a dynamic stander she could utilize. The staff at her school didn't like my request. One even made a snarky remark, " Did they tell you she was going to walk after receiving this therapy?" I retorted "No, but she is six now. With at least 2500 repetitions, she will gain something more than just being able to roll by the time she is 16." At her next IEP, I made sure to include everything that would benefit her. The school still didn't have the MOVE training and was reluctant to consider some of my requests that were not physical related. I will say that later the school did acquire the MOVE training and utilizes the curriculum. Unfortunately, Arianna can no longer participate because of her dislocated hip.
Once Arianna's therapies began to diminish, I sought other means. Her leg hadn't completely dislocated at that point, and I felt that she needed physical therapy in order to avoid complete dislocation. When I heard of a type of therapy that has had great success and was available in Poland, I knew it had to be available here too. After three months of research, I discovered it was offered at Easter Seals. I applied for the grant subsidary which assisted with almost a quarter of the cost, and received approval from Arianna's doctors. The program was expensive for us at the time, but I felt she needed it. I kept her out of school so that I could take her for treatments since her school was in Woodland and the therapy was in Sacramento.
My research uncovered many therapies to aid Arianna in acquiring a sense of independence. One that I still believe would benefit her is hyperbaric oxygen therapy. I applied for the Grant got Arianna's Doctors approval for her to receive the treatment and added her to their next available session. The program was expensive for us at the time but I felt she needed it. I kept her out of school so that I could take her since her shool was in woodland and the therapy in Sacramento. I discovered many therapies in my search to aid her in acquirening a sense of independence. One that I would still like her to do which I'm hoping would benefit her now due to her condition is Hyperbaric Oxygen therapy. Perhaps there will be a breakthrough in Stem Cell Therapy/Treatments and I can get Arianna that instead. At this point I would like for her to one day move her own power Wheel chair and use an accessable communication device.
As a result of Arianna's dislocated hip and her weight gain of 10 pounds, I could no longer safely lift her into the Suburban. She was now 83 lbs, and had to be supported in a certain way to avoid aggravating her hip. Her chair weights 75 pounds and also had to be lifted into the back of the Suburban.
I would call all her doctors and ask how I might get to her appointment scheduled on a certain date. I received suggestions such as "Do you have a family member who would be willing to accompany you and Arianna to her appointment so that they could assist with the lifting?" Or here’s my favorite: "Do you know another family that might have an wheelchair-accessible van who you could ask if they would be willing to take you and Arianna to the appointment?" I let her know that "I’m sure if I knew someone who had such a vehicle, they wouldn’t be able – much less willing -- to take me, Arianna, their child, and two wheelchairs for two reasons: (1) They are very busy themselves meeting the needs of their child. (2) There is more than likely space for only one wheelchair. You seriously see that as a viable possibility?"
It wasn't until Arianna had an appointment at Shriners Hospital that they suggested I try their transportation. I found out it is only for those who live farther away than 60 miles. Since we live right across the river, they won't transport Arianna. They suggested that I contact Paratransit. When I explained the situation to Paratransit, I made sure to let them know we live in West Sacramento. They provided instructions on how to apply and a website where I could complete the forms before submitting them to Arianna’s primary care provider. Thinking I was all squared away for the appointment, I called a week prior (as instructed) to schedule pick up and return times. When I gave my address, they said, "We don't serve your area. You’re in Yolo County." “I gave the previous phone representative my address, they know where I am and where I need to go, I went through the entire process and it isn't until NOW that someone says I need to go through Yolo County!" I asked to speak with the supervisor, explained what took place, how unprofessionally the situation was handled, and how it further complicated my situation.
Needless to say, I canceled and rescheduled Ari’s appointment, and then repeated the entire paratransit process for Yolo County. We now take Paratransit for all appointments, labs and activities. Arianna and one “attendant” can ride for $5, but it gets more expensive if an appointment is scheduled at a time that requires me to bring my sons and pay their fares. In those instances, sometimes Ari travels alone on Paratransit while the boys and I follow in the Suburban and meet at the medical facility.
In December of 2012 my left leg completely dislocated. Leaving me in constant pain with no releif in sight.
After I got bigger it wasn't so easy to coddle me at school. Soon I became a spectator.
Throughout my educational career, I rode the bus for 1-1/2 hours each way. I was held close, assisted hand over hand, placed in standing and seating equipment easily since I was little. As I grew, weekly therapies were discontinued or moved to quarterly or annual consults for the staff. Once my hip became completely dislocated and caused constant pain. The district could no longer transport me because the doctor ordered that I could not sit in one position for longer than 45 minutes. I did not attend school for 14 months.
2011 My mom discovered another type of intensive physical therapy, found out it could be accessed at Easter Seals. In August I was attending the Suitability Program.
After Arianna's hip was fully dislocated and crying more frequently came to be the new norm. I knew my greatest fear had come true, my disabled little girl with the cutest smile in the world and the brightest light in her eyes had become physically deformed and uncofortable. I was so afraid of her atrophying when I had learned about it 4 yrs ago. Doctors won't do the surgery that involves cutting off the femoral head because she is not done growing, the growth plates must beclosed. If they do the surgery before then it is highly likely that she will grow bone spurs in place where the end of the femur was cut off and cause more pain. Pain management is the only thing available to her right now for this issue. As a result of this I was unable to attend school, I could no longer tolerate the 1.5 to 1hr and 45 minute bus ride any longer. There were many issues stemming from this as well. Aside from not providing adequate home and hospital, their inability to provide transportation drove me to get Arianna a Lawer. Requesting appropriate transportatin new Inedpendent Education Evaluations for all areas of therapy. January 8 2014 Arianna finally returned to school with 1:1 transportation provided by an outside source.
The Saturday before Mother's Day 2013, I was returned home from the pediactric day care. It appeared that I was having pain some where and I was given tylenol 2x that day according to the sheet that was given to my mom.
In search of Alternative transportation to my appointments, meetings, and things to do outside my home. Many ideas were offered by Social Workers & Doctors.
During the weekends & some weekdays Arianna attendeds a Pediactric Daycare Facility. The Saturday before mother's day she was released/signed into their care as usuall, Arianna was greeted by the van staff as usuall and shegreeted them with her happy coo letting them know that she was happy to meet them. Later, upon her return home she was in an unusual state, she had been sweating and tears in her eyes, while I attempted a transfer it seemed like she was going into anaphalactic shock and her knee was hot, when I would lightly touch it she would start wailing. I called the on call nurse for the facility and demanded to know what happeened to Arianna, she is uncomfortable during transfers, she's been sweating and when I transfer she seems to go into anaphalactic shock. The message was taken and I received a call back in 30 mins from the On call Nurse. When the nurse called me back she said she was sorry to hear that and that she had called her nurse fot the day and Personal care assistants to see what had happend but couldn't reach anyone. She asked me what was going on with her, I explained once again and said "I need to know what happened to her because I'm taking her to hte emergency room and I need to be able to answer all their questions." I asked her why Tylenol was administered twice at 11 AM and 4 PM according to the sheet given to me upon Arianna's return, yet no one called to inform me like previous times when she ran a slight fever or had excessive pain from her dislocated hip and the like. I told her I felt like they were hiding something.
At 9 PM I took Ari to the ER in my Suburban. At the time she was lighter, 73 pounds. I avoid using ambulances since they are really expensive and I feel as if I should be able to take care of this myself, there's no bleeding or the like .
answer all their questions." I asked her why Tylenol was administered twice at 11 AM and 4 PM according to the sheet given to me upon Arianna's return, yet no one called to inform me like previous times when she ran a slight fever or had excessive pain from her dislocated hip and the like. I told her I felt like they were hiding something. At 9 PM I took Ari to the ER in my Suburban. At the time she was lighter than 73 pounds. I avoid using ambulances since they are really expensive. I explain what was happening and what I hoped she wasn’t suffering from. After labs and x-rays, we got the results at 5 AM. Arianna’s femur was broken near the knee. The admitting doctor said, "For children with Arianna’s condition, it is a fairly common fracture." I was not pleased with his statement. For 4 weeks I had to transfer Arianna and her cast alone, since my husband was at work, all the while causing as little pain as possible to her. This was physically and emotionally draining.