Tuesday, May 29, 2012

Memorial Day and New Teeth

We had a good Memorial Day yesterday. We did the usual and went to my parent's house for a picnic. We really wanted to take the little ones swimming, but the water was too cold. It certainly didn't stop the two older ones, though! Treston had physical therapy this morning and we broke the news to our favorite therapist, Beth. She said she was going to do some research on the specific types of muscular dystrophy that he has the possibility of having. She said right now the only thing she would change about his treatment is that they won't work him too hard after he starts to get tired out. She said that with muscular dystrophy, the muscles get tired much easier so it's important not to over work them. We have been really blessed with the physical therapists he has. They are very thorough and very caring. I forgot to mention that Treston got his first tooth in on Friday! He got his second one yesterday. I can't wait until he starts doing those toothy smiles that babies do when they only have those two bottom teeth! I am just having more and more fun with my little guy every day. Every day now I look at him and just wish he could just stay just as he is right now, forever. He loves it when I play with him on our bed. We just play and he laughs and gets so excited! Then when he gets tired he just snuggles right into me. It is one of the greatest feelings in the world. His having muscular dystrophy is always in my mind though. I try so hard to forget it and just have fun with him, but even while I'm really enjoying him, the thoughts are always there. No matter what I'm doing, things just seem so surreal right now. I hope this gets easier.

Sunday, May 27, 2012

A Diagnosis

Friday, May 25, 2012...
I will never forget that date as long as I live. We received a phone call from Chop on Wednesday afternoon asking us to come in on Friday morning at 8am. They said a specific neurologist that was there only once a month wanted to take a look at Treston's case and they had the lab result. For the next day and a half we prayed and thought of nothing else.
First, the physical therapist came in and evaluated him. He said he looks great, right on target save for his head lag. We thought that was good news. Then, the genetic counselor came in. She said we have an answer...muscular dystrophy. I felt faint. I felt like it wasn't quite real. I didn't know what to feel. They said they aren't sure what kind it is yet. They have narrowed it down to three...congenital, emery-dreifuss or limb-girdle. They won't know what type it is until they know when the onset of it is. They originally thought that his hypotonia was the onset, which would mean congenital, but when they saw how he has improved, they weren't sure. They tested Jon and me to see if we have it because if we do, then he would turn out ok like us, but they said they don't expect us to have it so that's pretty much a long shot. They told us they have to monitor his heart, because he is at risk for heart complications, so we made a cardiologist appointment for June 5. They said we have to watch for contractures, joint stiffness. The physical therapist said his hips feel a little tight and to let his regular physical therapists know so they can give us some excercises to work on with him.
We had all the kids with us that day and I actually think it helped keep me together that day. I think it finally hit me that night. I have this huge knot inside me now. I always wondered how parents handled getting news like this about their children. I just could never imagine. I still can't. I don't know how to look at my baby boy while he's looking up at me with those trusting, big, blue eyes and know that I can't help him. As a mother, you just always want to make everything better for your kids. You want them to feel no pain, ever. I don't know how this is going to look over the years, but I do know deep down that God has a plan. As hard as this is, I know God has a reason for allowing this. Just like I have to focus on his physical care, I feel like I need to focus on his spiritual care even more in the coming years. I want him to grow up to know God and to trust God no matter what his life is like.
I'm trying so hard to just trust in God. I need Him so much right now. I can't imagine going through this without Him. We need prayers. We need support. Right now I am constantly talking to God, just asking Him to carry me. I just keep picturing the footprints in the sand poem. I need to be carried through this right now. I need motivation right now to just do the everyday things. Right now it is almost 9:45 at night and I haven't made dinner for my older children. This is just so hard.