Yes, it is!

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.

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