Monday, April 23, 2012
A sense of Peace!
We had a clinic visit in Iowa City on Friday April 20th. It went well. We saw Peytons Neurologist who seemed to be in her words delighted to see Peytons progress over the past few months:) she also said that she thinks that we drastically slowed down progression of his disease. Something I can't begin to explain was a huge relief just to hear those words. All of his numbers looked amazing as well. Bone Marrow is very pleased. All in all he had a very good visit and we left feeling a sense of peace for once in the last year! Peyton always likes to keep us on our toes. At least this is what I have decided! On Sunday, Peyton Had a "lazy" day. He just kept to himself most of the day and then slept a lot of the afternoon. Didn't think to much of it since he went to my nephews swimming birthday party the night before and was having the time of his life :) so I figured he was just exhausted from that ! Well in the evening he decided he wanted to eat a corn dog, he loves them almost as much as he loves pizza. The only thing different was he wanted mustard with it..no big deal. Two corn dogs and mustard later, Peyton's lips and face started swelling. In the time it took me to walk to the kitchen for a rag and back his lips had gotten twice as big. I was scared to death! It's different when we were in the hospital and he had his allergic reactions. They worked fast to help him. I was at home with all three boys by myseLf. In a panic, I called Jason. He said to me ...Jess dont call me call the doctor or 911! Really, why didn't I think of that?!?! So I called Iowa City and they said to get him to a ER right away. After three pokes in both arms and his hand and them moving the needle all around with no luck , I refused to Let them try again. So they had to give him two shots in each leg. The only thing that makes sense is that Peyton had a allergic reaction to mustard. We have been having to alternate between Benadryl and HydrOxazyine every six hours to keep his swelling under control. Trying to stay away from steroids if we can due to Peyton's cortazole level being very low. Cortazole is the body's natural steroid that it makes and Peyton is currently not making it...we might have to supplement him, but we are giving him a few more weeks before we make that depiction. Or the doctors are I should say :) All in all he is doing much better now!! Another Great thing that happened this week aside from clinic visit, Peyton's PT actually for the first time felt Peyton's Gluetial muscles contracting while trying to get him to stand last week!!!! The first time we have EVER since he lost function of his legs :) That has to be a miracle right?!?!?!?! Just hoping that is a start of something amazing! Prayers that Peyton continues to improve slowly buy surely!! He is my super hero for sure! With hope and love