On November 10, 2003, Meagan was born seemingly healthy. We left the hospital within a couple of days and she began to develop normally. At a few months of age Meagan could hold her own bottle and roll herself over. Progression halted at around 6 months. At 11 months old, Meagan still could not pull herself into a sitting position, and she could not sit unassisted. Dr's called her "lazy", saying she would do things in her own time. She didn't. At 13 months, Meagan was able to sit unassisted if we put her in a sitting position. She would hold herself up with her hands and sit in a "W" on the floor. At 16 months we saw her first Neurologist. Meagan was diagnosed with Cerebral Palsy and sent home. Unsatisfied with the diagnoses and the process by which the Dr came by it, we requested a second opinion. The new Neurologist took a look at Meagan and said "I think this might be Spinal Muscular Atrophy. It is definitely not Cerebral Palsy" Immediately he sent us for testing. Spinal Muscular Atrophy is diagnosed with a muscle test called an "EMG" (or Electromyography) in which a needle is inserted into muscle (ours was done on the upper right arm) to measure electrical activity. Then they drew blood and ran genetic testing. Two weeks later we received positive results. Meagan has SMA. I repeat myself because it takes time to sink in. It's SMA. First question: "Is this a death sentence?" I don't care who you are or how positive your outlook on life, when you receive a diagnosis like this, your first question will be the same. Our Dr's response: "Not today". It's amazing how much that Dr's response set the mood for the next few years. It is a fight. We CAN win it. Every day Meagan fights is another day SMA loses.
When Meagan was diagnosed we had researched already and knew a little bit about the disease. Even though I was scared, I felt I had a good handle on what we would be dealing with. I had NO IDEA. When you think muscle weakness, you assume not walking will be the biggest part of it. It's not. When Meagan was a baby, she hardly ever cried. When she would cry, it was so quiet you could stand by her bed/carrier and barely hear her. At 6 months old, Meagan got a nasty case of pneumonia in the middle of an Arizona summer.
Since her diagnosis, Meagan has had several fights with pneumonia, ranging from mild and treatable at home to nearly full lungs and long hospital stays. Due to severe muscle weakness, Meagan developed scoliosis (curvature of the spine) and her chest wall folded in on itself. This put pressure on her lungs, making a bad situation worse. When Meagan was 5, in her kindergarten year, she had VEPTR (vertical expandable prosthetic titanium rib) rods placed to hold up her spine. These rods hooked on a rib on her upper back and connected to an implant at her hips, supporting her on both sides and straightening her back. Around every six (6) months after placement, those rods had to be lengthened through an outpatient (usually) surgery to "grow" with her. At six (6) Meagan had a gastrostomy tube (feeding tube or Gtube) placed as she was malnourished and unable to eat enough to sustain herself. As can be imagined, those surgeries took a toll on her body. After the initial placement, Meagan lost the ability to sit unassisted. After a few more surgeries, she lost the ability to hold her own head up. August 2012, Meagan had a lengthening done and developed a staff infection. She was in and out of the ER for 2 months and we were told her pain was normal and maybe she had a bladder infection since her white cell counts were high. She was finally admitted when one of the rods (under her right shoulder) was protruding through the skin. After that, we waited a year to do any more surgeries and Meagan gained the strength to hold her head up again and was able to feed herself again.
Another big part of SMA that I didn't consider (or know about) is the amount of advocacy these children need. That staff infection was a real eye opener. All of those trips to the Dr and the ER (which is a nasty place that you do NOT want to take an SMA kid if you can get out of it) and she had a staff infection the whole time. Emergency rooms look for the quickest solution and send them home as fast as possible and it took a hole in her back the size of her little fist all the way to the bone for them to finally KEEP her and figure out and fix the problem. There was an incident where on of the on-call Dr's actually told me her pain was normal and she would just have to learn to live with it. It didn't end well.
The thing about VEPTR rods is this: All of those surgeries make our babies weaker, but they keep them alive. Even WITH the rods, Meagan's spine continued to curve and her ribs continued to push on her lungs. In April, 2014 Meagan had her final back surgery. Her fusion. She did AMAZING! Meagan spent 5 DAYS in the hospital after her fusion and within a week of coming home was begging to go back to school. Unfortunately, as much as she loves school we kept her home because she was unable to stay up in her wheelchair more than an hour or two without hurting.
Meagan is happy. When I say happy, I don't mean that fleeting feeling you get when something nice happens. I mean happy. She laughs and jokes and plays around and never meets a stranger. Having a conversation with Meagan is like talking to an adult. She is very mature for her 11 years, as she has been through a lot, but she continues to act like a kid. She loves dolls and clothes and all the things little girls love and she dreams of being a mom someday. This disease, it's devastating to us as parents, but we get to mold our children, to help them become who they are and achieve all they can. Meagan will go far. She's built that way. Her body is weak and getting weaker, but her mind is STRONG. Before we pulled her out of school this year, Meagan did testing and her results were 1 and 2 grades above her level. She is very intelligent and she wants to use it well, getting straight A's every year and planning for her future at such a young age!
We have big hopes and dreams for Meagan, and this disease...? It will not define her.
When Meagan was diagnosed we had researched already and knew a little bit about the disease. Even though I was scared, I felt I had a good handle on what we would be dealing with. I had NO IDEA. When you think muscle weakness, you assume not walking will be the biggest part of it. It's not. When Meagan was a baby, she hardly ever cried. When she would cry, it was so quiet you could stand by her bed/carrier and barely hear her. At 6 months old, Meagan got a nasty case of pneumonia in the middle of an Arizona summer.
Since her diagnosis, Meagan has had several fights with pneumonia, ranging from mild and treatable at home to nearly full lungs and long hospital stays. Due to severe muscle weakness, Meagan developed scoliosis (curvature of the spine) and her chest wall folded in on itself. This put pressure on her lungs, making a bad situation worse. When Meagan was 5, in her kindergarten year, she had VEPTR (vertical expandable prosthetic titanium rib) rods placed to hold up her spine. These rods hooked on a rib on her upper back and connected to an implant at her hips, supporting her on both sides and straightening her back. Around every six (6) months after placement, those rods had to be lengthened through an outpatient (usually) surgery to "grow" with her. At six (6) Meagan had a gastrostomy tube (feeding tube or Gtube) placed as she was malnourished and unable to eat enough to sustain herself. As can be imagined, those surgeries took a toll on her body. After the initial placement, Meagan lost the ability to sit unassisted. After a few more surgeries, she lost the ability to hold her own head up. August 2012, Meagan had a lengthening done and developed a staff infection. She was in and out of the ER for 2 months and we were told her pain was normal and maybe she had a bladder infection since her white cell counts were high. She was finally admitted when one of the rods (under her right shoulder) was protruding through the skin. After that, we waited a year to do any more surgeries and Meagan gained the strength to hold her head up again and was able to feed herself again.
Another big part of SMA that I didn't consider (or know about) is the amount of advocacy these children need. That staff infection was a real eye opener. All of those trips to the Dr and the ER (which is a nasty place that you do NOT want to take an SMA kid if you can get out of it) and she had a staff infection the whole time. Emergency rooms look for the quickest solution and send them home as fast as possible and it took a hole in her back the size of her little fist all the way to the bone for them to finally KEEP her and figure out and fix the problem. There was an incident where on of the on-call Dr's actually told me her pain was normal and she would just have to learn to live with it. It didn't end well.
The thing about VEPTR rods is this: All of those surgeries make our babies weaker, but they keep them alive. Even WITH the rods, Meagan's spine continued to curve and her ribs continued to push on her lungs. In April, 2014 Meagan had her final back surgery. Her fusion. She did AMAZING! Meagan spent 5 DAYS in the hospital after her fusion and within a week of coming home was begging to go back to school. Unfortunately, as much as she loves school we kept her home because she was unable to stay up in her wheelchair more than an hour or two without hurting.
Meagan is happy. When I say happy, I don't mean that fleeting feeling you get when something nice happens. I mean happy. She laughs and jokes and plays around and never meets a stranger. Having a conversation with Meagan is like talking to an adult. She is very mature for her 11 years, as she has been through a lot, but she continues to act like a kid. She loves dolls and clothes and all the things little girls love and she dreams of being a mom someday. This disease, it's devastating to us as parents, but we get to mold our children, to help them become who they are and achieve all they can. Meagan will go far. She's built that way. Her body is weak and getting weaker, but her mind is STRONG. Before we pulled her out of school this year, Meagan did testing and her results were 1 and 2 grades above her level. She is very intelligent and she wants to use it well, getting straight A's every year and planning for her future at such a young age!
We have big hopes and dreams for Meagan, and this disease...? It will not define her.