Veronica was born on August 28, 2004. She
was diagnosed with Spinal Muscular Atrophy Type 1 on February 2,
2005. It has been a struggle but with the help of our family and
friends, we are doing quite well.
We are planning her 1st birthday party in August as a thank you to all of you who have helped us with your love and support these past few months. The fact that she will be having a first birthday is a miracle in itself.
It was back in January when Veronica was not meeting developmental milestones that we first realized something was wrong. She was just beginning to hold her head up at 4 months but would not put any weight on her legs. When she failed to progress I took her into Dr. Wilder. He said she was "hypotonic" and ordered some tests.
A few days after that Veronica was breathing really fast and Jen and I took her to the ER. That is what got the ball rolling with her diagnosis. She had several tests done but everything was normal. When Dr. Wilder came over to see her later in the day he knew what was wrong. Bob and I had the feeling he knew something but wasn't saying for some reason. When he called us into his office he said he suspected she had Spinal Muscular Atrophy. I had researched diseases where hypotonic is present so I knew what we were dealing with. The actual realization though was like a kick in the stomach.
The neurologist that we saw in Helena hooked us up with Dr. Swoboda at Primary Children's Medical Center. They had us come down there right away. It was invaluable as we learned how to care for Veronica.We use a cough assist machine to help with her secretions. We learned about bi pap to exercise her lungs. We arranged for her to have surgery to have a g tube put in to prepare for when she could no longer eat. We met a little girl named Sydney who was over 2 and had the same diagnosis. That gave us a little bit of hope.
Our best defense for keeping Veronica healthy is keeping her out of the hospital and away from sick people. We have a sign on our door asking people to wash their hands and stay away if they are sick. If she does get sick we need to use her cough machine several times a day. She does not have the strength to get rid of her own secretions in her lungs.
The first part of May Veronica lost her ability to swallow. That was particularly hard for me. We were glad we already had the g tube so we were ready for it. Since March she has been on an experimental drug called sodium phenylbuturate. We believe it has helped her. She seems to be able to move better, she can hold her arms up longer, turns her head more and moves her feet more. If we can keep her healthy for as long as possible who knows what can happen as far as research goes.
For now we live life one day at a time. We decided in the beginning we would be positive for her and it has paid off. She is a very happy baby and she knows how much she is loved. We appreciate every moment of every day with her and if we were asked we both would say we would do it all over again. Having the chance to meet her and love her more than we ever thought imaginable has made it all worthwhile.