December 31 - 1 year since Diagnosis

December 31 - 1 year since Diagnosis

One year ago today we got Levi's official diagnosis. Daycare closed at 1:00. Jay dropped him off like normal and I went to work. Something told me not to stay at work though. Something told me to go home before picking up Levi, and I am forever thankful that I did. On the answering machine was a message from Dr. W, Levi's Nephrologist, saying to call him as soon as we could. I called him back and I was able to get Levi's diagnosis and our next steps. If I hadn't been able to get this information until after the New Years holiday I think I would have probably driven myself and my husband crazy over the long weekend. This way I was able to get his diagnosis, process it some myself, then go and get Levi, bring him home and put him down for nap, and then I was able to call Jay and my Mom to process everything even more with them.

This past year has been crazy. It has been littered with ups and downs. We have all learned so much about medical stuff. We have met some amazing people between Camp Sunshine, Spreading Sunshine, I Run 4, and this blog. We have dealt with personal relationships that have been tougher then we ever would have expected. We have learned all about FMLA and exactly what we can and can't do under it. We have managed to stay out of the hospital after the initial hospital stay last January. We have had 20 infusions, with 1 allergic reaction. We have had more blood work visits then I can count easily. More band-aids, prizes from the treasure box, and donuts then any one little boy needs :)

A year ago today I had never heard of Upshaw-Schulman Syndrome nor had anyone in my family. And now we know more about it that any family ever should. Our team of doctors and nurses have learned all about USS as well as they had also never seen a case. We have battled with choices and decisions, with knowing what was best for Levi. We have been over protective at times, and probably not protective enough at other times, but it's hard to know where to put that line. We don't want Levi to live in a bubble, but we also don't want him to get sick if we can help it.

We have cried more tears and spent more sleepless stressful nights then I would have ever imagined that we would need to do as a parent. The stress of parenting a child with medical issues is overwhelming at times. It can also be incredibly enjoyable and has opened up a totally different world to us then we ever would have expected.

The past year with Levi has been wonderful. He is an amazing boy and I am so happy that I get to be his mom. The year is not what I would have expected it to be when Levi was born, and I know his life going forward will take lots of twists and turns that we aren't expecting as well, but I am so glad that I get to be a part of his life. And when Levi looks at me and says "Mommy, you are my BEST Friend" everything I do is worth it!