Yes, it is!

Thursday, March 11, 2010

Another Inspirational Story

This story is about Jackie's physical therapist, Julie. Or rather, it's about her daughter, Abby. Abby is now 16 years old. She is profoundly developmentally disabled but she has accomplished more in this life than many able-bodied people. Abby was born missing part of her corpus callosum. She is unable to walk, talk, eat independently, or anything that most of us take for granted. Abby does have her own way communicating, though. She has her favorite toys and she is very close to her middle sister. Many people who encounter somebody like Abby may not consider that a person like Abby has a quality of life. Abby is proof that ALL persons, whether disabled or not, have a purpose in life. I will get to that in a moment.
Julie has two other daughters, Katelyn and Emma. Katelyn is now 15 years and Emma is almost 12 years old. Right before Emma turned 7 years old, she was diagnosed with Leukemia. Emma had gone for a routine dental visit after which a few days later, Julie noticed a lump on the side of Emma's face. It was soon after that that Emma was diagnosed with Leukemia. Emma immediately started treatment for the cancer and became a candidate for a bone marrow transplant. Family members were tested and it was determined that Abby was the best match for Emma's transplant. Now I realize that there are some people who would be critical and question the ethics of taking marrow from a profoundly disabled child in order to save the life of her sibling. But, one must also remember that although there were risks involved in taking Abby's marrow, they were far outweighed by the benefits. And it isn't as if one life was being intentionally sacrificed for another.
After the bone marrow transplant, Emma was in isolation for 100 days before she was allowed to resume a somewhat "normal" childhood. She is now almost 5 years out from being pronounced NED (no evidence of disease). She is thriving in school, excelling in sports, and is very active in organizations such as Children's Miracle Network. She is a mini-spokesperson for awareness of childhood cancers.
I remember asking Julie once if she would have considered terminating her pregnancy with Abby if she had known that Abby would be so disabled. A resounding "no" was her reply and I have to agree. Julie believed that there was a reason for Abby's life and that point was driven home nearly 5 years ago when not one, but two of her daughters' lives were being severely impacted with life and health issues. By life, I mean quality of life.
Over the years since Julie has been treating Jackie (from age 9 months on), we have become close and Julie regards Jackie as one of her own. Julie has a passion for children, especially for those with special needs. And like me, I'm sure that she never dreamed that when she chose Physical Therapy as a career that she, herself, would be a parent of a special needs daughter. I love to share Julie's story because it is such a reminder that we all have a purpose in life no matter what our individual abilities may be. 

Tuesday, March 9, 2010

Inspirational story for CP Awareness Month

I had the pleasure of talking to another CP mom, Anna. Her 19-year old son,J, is quite an inspiration. I met him this past weekend at church. This young man is in a wheelchair but he is not letting that keep him from becoming an independent individual. Anna shared with me that J was born 2 months premature and had suffered a lack of oxygen which resulted in his CP. J has gone through numerous treatments and surgeries, including for his eyes. J's parents divorced during his infancy and his mom, Anna, remarried a wonderful man who took on the responsibility of helping to raise this special young man along with his sister. Now that is commitment. It is sad but true that there are too many men who would not take on such a task. Anna shared that up until high school, J attended a public school where he had an aid who assisted him in getting around campus, opening books & taking notes, etc. For high school, Anna sent her J to a private Christian school where Anna, herself, attended with him to be his aid. It was a 2-story building and together with a couple of the guys from school, Anna was able to get J upstairs for his classes. Anna did this every school day. Anna is very committed to making sure that her son gets the education and services he deserves.
Today, J is a full-time student at a local college where he is studying business. Anna shared that it was difficult to let her son go on his own to school. She takes him to the campus and picks him up when his classes are done. J has refused to let his mother accompany him and has demanded independence. Having my own special-needs child, I can relate to the difficulty of letting your child go. We're not there to rescue them and protect them. We can only hope and pray that our children will be okay without us by their side. I applaud Anna for finding the courage and strength to let her son become his own independent self. After caring for J and assisting him his entire life, that had to be a huge adjustment. I'm sure Anna would still be by J's side if he had not demanded to be let go. Now J is doing very well in his classes and he's making friends that would otherwise not have made if his mother had been by his side. J is well on his way to being independent, to completing his education, to building a career, and getting his driver's license. I will not be the least bit surprised if he meets a wonderful young lady to marry and have children with. J could easily sit back and say "woe is me" and continue to depend on others to care for him. But J is determined to self-sufficient and accomplish big things. J should serve as inspiration for not only those who deal with disabilities but for those who just plain are not motivated to make something of their lives. J is also an inspiration to those who don't give credit where credit is due because of their closed-mindedness when it comes to persons with disabilities. Unfortunately, there are still too many people who quickly assume that persons with disabilities are not capable of living and leading full, independent lives. J is on his way to proving that assumption wrong.
J is an inspiration to me and I look forward to getting to know him better. I am so excited to see what his future holds for him.

Monday, March 8, 2010

March is Cerebral Palsy Awareness Month

Wow, where to begin? I guess I'll start from the beginning of Jackie's life. Jackie was born via C-section due to her being in the frank breech position. She was born right around 37 weeks which is considered to be term. As far as we know, she was born healthy with no complications at birth. However, she did develop jaundice to the point of requiring the bili-lights. She had also lost nearly a pound of her birth weight. It was difficult to leave my baby behind in the hospital. After her discharge from the hospital, Jackie still continued to struggle to gain weight. I just continued to let her nurse from me and from a bottle as often as she would take it. Being a first-time mother, I felt very unsure and a little frightened by what was happening but I did not think it was a very serious matter. Jackie continued to be monitored at the pediatrician's office for weight gain. Jackie slowly but surely started to gain weight. During this time, Jackie's maternal grandmother visited and stayed for an entire month. For me, this was a stressful time and I felt that I was not able to adequately bond with Jackie. Mother had a way of making me feel guilty if I tried to bond with Jackie. However, Jackie bonded very well to her grandmother.
On the day before Jackie turned 6 weeks old, her other grandmother came to visit. I remember the date as that was my dad's birthday. That evening as I was finally finishing up the birth announcements, Jackie's grandma insisted on holding Jackie so I handed Jackie over to her where she sat in our oversize recliner in front of the TV. After some time, I heard a loud thud, loud enough that even the dog looked up from her slumber and looked around. It was then that I noticed Jackie's grandma getting up from the chair with empty arms and starting to reach down. I immediately realized what had happened and ran frantically toward my baby on the floor. Jackie started to scream so with that and my own hysterics, Tim tore down the stairs to see what was going on. I immediately told him that we needed to get Jackie to the ER. Much of that night is a blur but I do remember grabbing a few items and getting Jackie into her car seat before we took off for the ER on base. I remember crying and praying the entire way, I was so frightened. I was so afraid that God was finally going to take my baby away from me. We got to the ER where the very kind nurse tried to calm me down and immediately took Jackie's vitals. We were immediately placed into a room where the doctors examined Jackie and ordered a CT scan. I could not bear watching Jackie struggle while the technicians prepared Jackie for the scan so I made Tim stay with her. The scans came back showing a skull fracture and a brain bleed on the right side of the brain, the side where I found Jackie laying on the floor. Jackie's condition was immediately downgraded and she and I were rushed via ambulance to St. Louis Children's Hospital. A full set of x-rays were done on Jackie. Now looking back, I believe that was to look for signs of abuse. A social worker was sent to talk to us and I had to explain again what happened. The entire incident made me feel even more inadequate as Jackie's mother and I felt suspicion was being cast upon me for the harm done to my daughter. I was not allowed to feed Jackie until a few hours later when we were cleared to go to a room in the hospital.
I remember on the way to the hospital, the nurse on the ambulance (another very kind nurse) showed me on the CT scan where the fracture and the bleed was. It was very clear. However, from the scans taken at Children's hospital, no fracture was detected. The brain bleed was there, though. So we got to a room finally where I was able to finally feed Jackie. She continued to be observed for seizures and anything else that a brain injury could result in. Thankfully, Jackie did not display any ill effects and we were sent home later in the evening the day after the injury. We were given instructions to follow-up with neurologist in 6 weeks. Six weeks later, I took Jackie to her appointment where she was seen by the PA, not the actual physician. The PA just measured Jackie's head, weighed her, asked a few questions, and discharged us. Looking back, I wish I would have known better to ask for a follow-up scan.
Fast forward a couple of months, I took Jackie in for a routine visit at 4 months. I casually told the doctor that I thought Jackie might be right-handed because she used her right hand for everything. I guess that raised red flags with the doctor because he asked a couple of questions and informed me that babies are actually ambidextrous during infancy. He was aware of Jackie's head injury so he suggested that I call the local Early Intervention office for an evaluation. I made the mistake of not following up on that suggestion probably because I was in denial. We also had left just a couple of weeks after that visit to go back home to Florida to visit family and introduce Jackie to friends and family who had not yet met Jackie. A couple of weeks after returning home from Florida, I took Jackie back to the doctor's office for another weight check and brief exam. The doctor then noticed that Jackie's left leg was also showing symptoms of weakness and he asked me if I had called the EI office, yet. I was crushed when the doctor informed me that something was going on because not only was Jackie displaying a lack of use of her left hand, but her left leg was showing weakness, albeit subtle. I felt horrible that I did not notice the problem with her leg.
So, I called the EI office and a visit from a coordinator was immediately done. The coordinator noticed how tiny Jackie was. Then she interviewed me for Jackie's medical history, my pregnancy history with Jackie, and our family medical history. Then the coordinator arranged for Jackie to be evaluated by an occupational therapist and a physical therapist. Then the doctor ordered an MRI when Jackie was around 6 months old. The MRI showed an area of brain damage on the right side of Jackie's brain. This was referred to as a PVL (peri-ventricular leukomalacia). I was crushed. My daughter has permanent brain damage! Will she walk? Will she talk? Will her intelligence be affected? Will she be able to run and play and do gymnastics and all the other things I had dreamed of? These were just some of the questions that ran through my mind. I was scared for my daughter and for me.
We were immediately referred to a neurologist, Dr. Yamada. He has been awesome to us and I appreciate his care for Jackie. Dr. Yamada diagnosed Jackie with Cerebral Palsy resulting from the PVL. His opinion is that the brain bleed was due to the fall Jackie experienced at age 6 weeks. Now Jackie's former pediatrician's opinion was that it could have resulted from a stroke in-utero. I had heard that babies can suffer strokes in-utero and I definitely knew that kids suffer strokes. I really don't know who to believe but I tend to lean toward Dr. Yamada's opinion as Jackie seemed to be born healthy. I look back and I sometimes wonder if Jackie's poor weight gain (failure to thrive diagnosis) or jaundice could have contributed. Or did I bump her head? I don't know. The reality now is that Jackie has a permanent condition called Cerebral Palsy but thankfully she is considered mildly affected.
Now, just because Jackie is mildly affected does not mean that we do not require as much care. In reality, I am quite busy taking Jackie to therapy appointments, specialty care appointments, advocating for her, so much more than I ever imagined I would have to deal with. It takes alot of time and effort to keep up with Jackie's treatments in order for Jackie to continue to progress. Jackie has also endured 2 major foot surgeries. The first one, heel cord lengthening, was performed the month before Jackie's 2nd birthday. She wore a cast for a full month and was immediately placed into an AFO after the cast removal. Through all of Jackie's growth spurts, we have gone through several AFOs. The latest foot surgery occurred in November 2009. I was really torn at the time, especially after the surgery, whether or not we made the right decision. This was really major surgery involving reconstruction of the cavus. I know now that we did make the right decision but unfortunately since Jackie was still so young for this surgery, she will be facing at least another one due to growth when she is older. The surgery was quite extensive and pins were placed to keep everything in place inside the foot. Jackie had a full-length cast with the leg bent at 90 degrees. This was done to keep Jackie from walking on that foot. Now Jackie's foot looks much better and the arch is not as high. And her foot does not look so deformed. However, there is still a significant difference between the size of her left foot and the right foot. Only time will tell if the foot will catch up somewhat with the other foot.
Jackie has a had series of splints for her left hand over the years. She will be getting a new one this week (hopefully) that will help to hold her thumb outward. Just like with her left leg and foot, Jackie has good days and bad days with her left hand.
Throughout of this, Jackie has been such a trooper and she is an inspiration to me (and to so many others). She is funny, smart, cute, affectionate, a wonderful big sister to her brother Ben. Jackie is also a very strong-willed little girl. Hopefully, she will use that strong will to her advantage as she gets older.
Jackie is also a very talented little girl in the area of music. She loves to sing and she can't wait to start piano lessons. I will be searching for a piano teacher this coming Fall, somebody who will understand Jackie's needs and will go at Jackie's pace.
To most medical professionals, Jackie has a disability. To me, Jackie is just like any other typical little girl. She is perfect to me just the way she is. As difficult as this road has been, I love Jackie more than she will ever know and I cannot imagine her not in our lives. It is my hope and dream that Jackie will continue to inspire (and be inspired) and that she will accomplish big things in her life.
This post is dedicated to Jackie and everyone else who deals with cerebral palsy in some way, whether personally or as a caregiver.

Saturday, March 6, 2010

Chaos

Chaos! When will it end? Ever? Today started out good. Tim went to the office to work on a project for his MBA class. I did some housework while the kids played. After Ben's nap, I took the kids outside as it was a beautiful day. Jackie immediately went over to Taylor's (Jackie's best friend next door) house to ask her to come out to play. So, all was well...for a moment. They rode their bikes, pulled each other in the wagon, played in the dirt while I attempted to start some landscaping.
I got 3 bricks laid down before Tim came home. Tim looked at what I started and asked "where's the hoe? It's easier with the hoe." Umm, thanks dear, I was using the hoe. And the shovel. And the rake. I was being resourceful and doing my best to start on the landscaping and he's concerned with me using a hoe. Hmph. So he goes inside and then comes back outside and plays with the kids for a few minutes. In the meantime, the girls (Jackie & Taylor) noticed a cat and took pity upon it. The cat actually belongs 3 doors away but the girls apparently thought it was homeless because it did not have a collar or tags. I assured the girls that the cat probably has a microchip. The cat is very friendly and Taylor picked it up and hugged on it. While this is going on, Tim comes out to ask what's for dinner because he's hungry. Umm, well, I didn't plan to cook a dinner because he had called earlier to say that he would probably be working on his project for awhile longer and said to not plan for dinner for him. Okay, so I planned to just do something quick and simple for the kids. So, I immediately tried to come up with a plan for dinner that would include Tim and decided on just doing vegetables. I went inside to get everything started and Ben followed me inside as he's just 2 years old. Then Tim went back outside. In the meantime, Jackie comes running inside to ask me to bring the dogs inside so that she and Taylor can put the cat in the backyard. Yeah right, kiddo. Even if I brought the dogs inside, the cat is not about to stay in that backyard. Sometime during this exchange, Tim came back inside without me knowing. When I noticed Ben was not inside the house, I immediately went into panic mode and when I looked in my bedroom, there was Tim laying on the bed watching TV but no Ben. I asked Tim if he saw Ben and his response: "No, I thought he was outside with you!" Um, no, did you not see me in the kitchen cooking and getting dinner together that I had not planned for, mind you. So I drop everything and run outside to look for Ben. I found him in the front side yard and then I spotted the girls taking the poor cat home. I got Ben inside and he was not very happy. Finally, Tim suggested putting Ben in the back yard. Fine then, at least he is somewhat safer in the fenced-in back yard. Of course, the dogs proceeded to try and eat Ben's banana that he was carrying around. At least Ben was out of my hair so that I could tend to dinner. Tim was too busy watching TV after a long day of working on his project.
I hate dinner prep time. It is the bewitching hour here. The kids cry for snacks, the dogs are underfoot, Tim is laying in bed watching TV after a long day at work, I'm trying to get the evening's meal prepared and tonight was no different with the exception that Jackie and Taylor were begging for Taylor to spend the night. Tonight just is not a good night for that and I told the girls so. Apparently, they were unfazed with my explanation of why and they continued to pester me. I finally compromised and told Taylor that she can stay for dinner. Thankfully, Taylor seemed happy with it. Jackie, of course, did not and continue to ask at the table for Taylor to stay the night. Finally, Tim gave his resounding "No". During all of this, Ben is just being a bear. (Actually, he's been a bear all week) He wanted his dinner, he didn't want. He wanted it, he didn't want it. Uggghhh. I was done with it by this point. Tim finally picked Ben up and put him in his crib. When Ben finally calmed down, I brought him back to the table where Ben immediately asked for his plate. Good. Until I went outside to make sure the girls brought everything back into the garage. I came back inside and Ben was gone. Apparently, Ben started up and Tim put Ben back in his crib. Ben finally calmed enough to come back out to finish his dinner. Whew, got dinner taken care of. Now to clean the kitchen. I really find it amazing how I can spend 3 hours cleaning my house, including the kitchen, and it takes just 2 minutes to make my kitchen look like a hurricane blew through. Thank God for dogs. Their sole purpose is to clean up after the kids. Just kidding about that but I tell you what, dogs certainly are good for more than just mere pets. They're awesome when it comes to kitchen floor detail after the kids eat.
Tim often wonders why I don't get to bed until very late. Well, I work all day, not outside the home but I am quite busy taking care of my kids, trying to keep the house from becoming a pigsty, doing laundry, running around to Jackie's appointments (and my PT appointments), and much more. Then before Tim gets home, I try to get dinner started. After dinner, I clean and disinfect the kitchen, bathe the kids, get the kids ready for bed, and sometime in between everything, I try to find time to go the the YMCA. The only QUIET time that I have to myself is after everybody (including Tim) is in bed. Tim works hard all day so he comes home and kicks back. He does go to MBA classes 2-3 times a week and works on his project in between work and class. So he's busy, too. And on the nice weekends, he takes his dirtbike out. That will be starting up again soon so I am on my way to being a dirtbike widow again soon. Ah, well.