August of 1993 was a HOT month. We had just moved back to Ohio from the Detroit Area where Greg and I had been living and working for the past three years. We moved back for many reasons and were staying with my parents temporarily until we could get on our feet and find our own place. Greg was still working in the Detroit Area and commuting every day, 6 days a week. We were SO fortunate that our parents offered for us to stay with them and little did I know how much we were going to need this for many reasons.
I was 8 months pregnant and as I said, it was HOT. The air conditioning in my parents' home was out that summer too! The night of August 17th, I still had about 5 weeks to go until my due date. My pregnancy was going well, easy, no problems. Greg's grandfather's birthday was August 17th. He died a week after our wedding in 1990. We called Greg's Granny in Michigan to see how she was going that day. She jokingly said something like, I'll give you $5 if you have the baby tonight, PaPa's birthday. (she was joking!) Greg and I were home alone, my parents went out to dinner with family in Port Clinton. About five minutes after talking to Greg's Granny, my water broke! We were off to the hospital, excited, and a little nervous because this was our first and it was a little early. It wasn't long before our family joined us. After an easy 8 hour labor, Nick was born the morning of August 18th, healthy, a good weight, and we were all doing great. I remember Greg saying, "that's my boy" when he was watching Nick in the nursery. By the next day, we were sent home. Nick was a little jaundiced, which the discharge nurse pointed out to us, but told us this was normal for a breast-fed baby, and to just take him out in the sun. No one seemed worried, so we were not worried. We took Nick home and did just what they said. We have pictures of us taking him for a walk outside. As the week went on, Nick seemed to be eating ok, but not great. We were in that new parent sleepless "fog" of feedings, changings, etc.
The only thing I really remember is sitting in the rocking chair, early one morning. Greg was getting ready to go to work in Michigan. It was an hour an a half drive or so each way. I got this sick feeling in my stomach and felt like something was not right. Nicholas seemed so tired and I couldn't get him to eat well. We had called and had an appointment scheduled at the doctor the next week and the nurse did not seem worried when we called and told them about this a few days earlier. This feeling just hit me all of a sudden, panic. I called the doctor's office when they opened and was waiting for the doctor to call me back. He came highly recommended by people we knew and he was very "laid back" according to some people we knew, but they really liked him. I didn't wait more than a few minutes and I called my mom shortly after she arrived at work. I told her I was waiting for the doctor to call and that something did not seem right. She rushed home and took us to the emergency room. I remember they took one look at Nick and took him back immediately. I heard the nurse talking to someone and she said she had called Nick's doctor to tell him he was in the ER and the doctor apparently was not happy ("yelled") and said they he had not told us to come there. ( I heard the nurse in the ER say this.) It was a whirlwind from there, questions, tests, Nick had an IV in his tiny little head. He was dehydrated and having seizures, which I did not recognize. We were told he was very ill and may not make it, and was admitted to the NICU. I remember being there thinking, how did this happen and what is going on? I just wanted to hold my baby and I couldn't because he was so sick. The hospital gave us a room to stay at the hospital so I never left from that day on. After more tests, Greg and I were called into our room by two nurses in the NICU. They shut the door. They wanted to tell us that Nicholas was showing signs of brain damage and wanted to make sure we knew what that meant. I had worked with individuals with disabilities and my mind went to the worst case scenario. I just cried and screamed. After an MRI, it was confirmed that Nicholas had brain damage from the jaundice, hyperbiliruminemia, was having myoclonic seizures. We were introduced to Nicholas neurologist who is still his neurologist today. Nick was in the hospital for some time and after he was discharged, we went home to my parent's house, where my mother had gotten a bedroom together as a nursery for Nick, something I had not had the time to completely finish as we'd just moved back to Ohio and then spent the last several weeks at the hospital.
The following months were a blur. We were referred to an early intervention program in our area and I took Nick for an assessment. I remember walking into the building and there was another parent to greet me. She had a daughter with Downs Syndrome and her daughter held Nicholas while I took my coat off and got settled. A team of people assessed Nick. He was eligible for early intervention services as he had delays in many areas.
For those of you who don't know, Early intervention (EI) is available for children with or without disabilities from birth through age two. EI is family-centered, focusing on the overall needs of the family to provide the best developmental environment for the child. An Individualized Family Service Plan (IFSP) is required for a child enrolled in an early intervention program. The EI programs are required through Part C of the Individuals with Disabilities Education Improvement Act (IDEA) and are administered by the Ohio Department of Health through its Help Me Grow program. Every state offers EI services though. Our EI services were offered by our local Board of Mental Retardation and Developmental Disabilities (MR/DD). Anyhow, we were assigned an Early Intervention Specialist (EIS). We had a nurse coming to the house weekly, and occupational therapist coming to the house to help us with feeding, etc., (Nick had trouble sucking a bottle or anything..........), a respiratory therapist for his apnea monitor as Nick stopped breathing frequently, and the EIS. We had people at the house at least four days a week and Nick was having constant seizures. We were just really in minute to minute survival mode, literally. The daily care was all-consuming and Greg had to work, as did my parents. They all helped out of course when they could when they were home, but I was the one who was home so I primarily took care of Nick. During this time too, I was trying to get to know Nick and have that "normal" bonding time, taking pictures, reading books, finding toys he liked. He was in and out of the hospital for seizure monitoring. We didn't have much time to think or do anything else but get through each day.
We had so many medical bills and doctor and therapy appointments! On December 7, 1993, when Nick was not quite four months old, I took him to the neurologist office for a follow up appointment. We liked this neurologist, still do. He's one of the best in our area. I waited with Nick (with the diaper bag, apnea monitor going off, trying to feed and change him, having seizures) in the waiting room for three hours. During that time, I remember a patient came in ( a parent and child) and they were five minutes late. They were told they'd have to reschedule and come back another time. I remember thinking how long I and others had been waiting for this doctor and then this is how they treated a patient who was five minutes late? When we finally got in, I told the doctor and nurse that I waited because he is a good doctor but his office staff was terrible. He apologized and explained to me he had a surgery and he tries to spend a lot of time with each patient. I really liked the way he spoke to me and explained things. You know, to this day, I still tell him that because we always have to wait FOREVER. We know to pack a snack, things to do, etc. when we go. Because we like him and there aren't many other options, we stick with him. Anyhow, he always spends a lot of time with Nick and us and seems to really care and listen. After examining Nick that day in 1993, I remember thinking Nick was "getting better" as he was "so strong". The doctor could hold him on his hand and Nick was stiff as a board. I soon learned that was not a good thing. I was getting Nick dressed. The doctor was writing in his chart and turned to me and said, " I want you to know, because I know you are a smart Mom and you read his chart ( I read the doctor's notes in his charts, I do, and there is a reason for that which I may talk about later!), I am diagnosing him with athetoid cerebral palsy, quadriplegia". I heard what he said, I was dressing Nick and said to him, "Isn't this outfit cute, my mom got it for him?" He asked me if I wanted to go into his office and talk about this more or if I had any questions. I said no and got out of the office as soon as possible. I had heard of cerebral palsy, but didn't really know anything about it at all. I started to get this lump in my throat, burning, and a feeling like someone was sitting on my chest on my way out of the building into the parking garage. I was carrying Nick, my baby, looking at him, and I couldn't speak when I tried to say something to him as he looked at me. Nothing could come out. I was sweating and could not breathe. I passed several people in the building and in the garage. People were talking, laughing, one smiled at me. I remember thinking, "this is what it feels like in the twilight zone" because I couldn't believe everyone was going on with their business as usual and I had my baby in my arms and he has cerebral palsy, brain damage, and I didn't know what that meant, but I knew it wasn't good. I was so angry and I felt like screaming but I didn't want to scare Nick or cause a scene. I didn't even realize it but huge tears were streaming down my face and my face was hot. I only realized it when I had trouble seeing. I got us in the car and drove home. My mom was home from work that day to wrap Christmas presents, etc. She had asked if I needed her to go to the appointment with me but I had told her no because it was just a follow up, I wasn't expecting anything new. She looked at me and knew something was wrong. I handed Nick to her and just said, "he has cerebral palsy" and left the room. I could hear here saying "no" and crying as I went upstairs. My Mom called Greg and told him and he came home. She called my friends and our family, the church and told them the news. I called our EIS and asked for info. on CP. That night, the doctor called and spoke to Greg. He knew I wasn't registering what he said and he was unsettled by my reaction. We set up an appointment to go into his office and talk to him to get more information and we did. The next month, we got a letter from our insurance company stating they would no longer pay for Nick's therapy (OT/PT?speech) because he was "non-restorable", a direct quote, because of his diagnosis and that is was a "chronic condition" that could not be cured". We spent the next two years, fighting our insurance company, hours on the phone, writing letters, appeals, up to the State Board of Insurance. When Nick was two years old, they finally agreed to pay for a certain number of visits.
What did we do during that time? Most people who know about CP know that even though it can't be "cured", it is "managed" and through therapy, especially during the early years, development can be maximized in every area. Some studies even say that brain cells can be repaired during that time. The bottom line is, if there is no early intervention, the outcome will be as good. So, we turned to our early intervention program for help. They had already been involved, but we showed them the letters from insurance so they provided those services for us. During this time too, I had to go back to work, because we NEEDED the insurance badly. After going to 17, yes I said 17, daycare centers and childcare providers, I finally found one center that said, sure come in, we'd like to try to make this work. So, even though it was agonizing for me as a mother of a baby with all of these issues, to go to work, we had to try to make this work. We met with the early intervention program, the EIS, the therapist, and the daycare staff. We had meetings at 7:30 am because they were trying to accommodate my work schedule and have everyone at the meetings who needed to be there. My family usually came too. We had Nick's IFSP (Individual Family Service Plan) meetings there every three months, but communicated daily or weekly. The early intervention staff provided support, information, and guidance to the daycare center to make things work for Nick and have him included as much as possible. He was. They learned how to care for him, feed him, give him his meds, position him. The EI staff provided a special corner chair that they had graduate students make for Nick so he could sit up and hold his head up to eat and for all activities. They provided other equipment as well. They OT from the EI program (who is still Nick's OT today, as she opened a therapy program with a colleague) made Nick's first pair of AFOs )Ankle Foot Orthotics with a grad student and with orders from Nick's orthopedic surgeon. When problems or issues came up, and they did, they helped to solve them with us and the center. The EIS visited Nick at the daycare once a week to work with him and the OT came with her at least twice a month. They had someone video-tape the sessions so Greg and I (and our family) could see them and know what they were doing if I couldn't make it there on my lunch hour. They helped us to make this work for our family. I get chills when I think about how much they did for Nick and us.
I read every book I could get my hands on and I (and Greg) educated ourselves about cerebral palsy and what Nick needed. This is when we started becoming "experts" on Nick and Nick's particular needs. CP has a wide-range of functioning levels, so it is different for everyone. We were told by three different doctors during this time that Nick would never walk and would have mental retardation. We thought, "ok, if that is the case, it is, but how do you know for sure?" We decided to let Nick show us what he could do. We made sure he got all of the therapy and equipment he needed. We did everything we could do. He started to do things, like hold his head up, learn to sit up by himself, stand in a standing device. True it was later than most kids, but we knew he was determined. We also knew he was trying to talk and tell us more things. He could point to the alphabet correctly, randomly, not in order, and consistently before he spoke. One professional said to us, "is this overly=hopeful parents speaking or can he really do this?" We thought, Nick, you show them and us what you can do. He did. We knew, even before they could "test" him that he did not have cognitive delays based on what he communicated to us, verbally and non-verbally. We consistently saw that Nick was SO FRUSTRATED because he wanted to say something or do something physically and his body was just not cooperating. It was heart-breaking to watch but also made us more determined than ever to advocate for Nick in any way possible.
I'll write more later, but this idea of advocating, had been a regular part of our lives ever since those early days. It comes from Nick and watching him "SHOW" us what he can do, what he wants to do, and we want to make sure he has the opportunities in life to do the things he wants to do. Not only that, we want him to have MEANINGFUL relationships and experiences. We want that for Nick and Bella both. We are no different than other parents who want the world for their kids!
Finally, going back to that time when I was sitting in the rocking chair and I just knew something was not right, I have often looked back and thought "what if I didn't listen to the nurses and just took him to the hospital sooner, or what if I had a medical background and would have known there was a problem, what if..........". I try not to do that anymore. They lesson we learned the VERY hard way is always listen to your intuition, and definitley when it comes to your children. You can never go back and change things. I don't know if I could have changed this, but you can never go back. I ALWAYS listen to my intuition now, even if the doctor or someone else thinks I'm over-reacting, I don't care. If I don't like a doctor or professional working with my children, I won't hesitate to make a change. I don't want others to learn this lesson the hard way, so maybe by sharing our story, someone will learn to trust their intuition! It's always better to be safe and even if it is "over-reacting", it's better than paying the price if you don't listen to your intuition and something bad happens. Trust me on this one.
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