This was Karson at his appointment a couple weeks ago with Dr.Swoboda he just got back from getting a new PIC line so he was very tired but thank goodness for the new line.
This was on his Blessing day June 1, 2008 the day before being diagnosed.
Two years ago today we met this amazing woman. This is Dr. Kathryn Swoboda Karson's SMA doctor. I can't say enough how thankful I am for her and that she has never given up on Karson. When she met Karson for the first time in the E.R. she diagnosed him in 30 seconds, no exageration. At that time, she told us we could have a day, a year or 8 years little did we know what she was really thinking. They told us from the beginning that Karson was weaker than most kids, so they didn't expect him to live more than a few months. Well last week we had an appointment with Dr. Swoboda and she was pleased with the way he looked. It's always good to hear that she thinks were doing a good job taking care of him. I have to say that I was suprised that she told us Karson is her only patient with a PIC line and on TPN. I know that he has presented new issues that she hasn't seen before and I'm glad that she has been able to learn from him. She still doesn't know why his body was losing blood but it has fixed itself thank goodness and we are slowly increasing his feedings through his G-Tube.I am so thankful for these last two years!! Looking back if someone would have told me all that we would be going through I would have said there is NO WAY I can do that. I just remember being told he was going to die and then all these machines and different things we needed to do to give us more time with him. It was so so Overwhelming !!! Anyone who has an SMA child know's what I'm talking about. These kids are full time jobs but you get used to it . I'm so thankful that we have had this time to get to know Karson and we realize the longer we have him the more we love him and more we love him the harder it will be to let him go. We prayed everyday we would be able to get to know our son and have him make milestones .We can honestly say our prayers have been answered.
