Yesterday was a first for me. Yesterday I sat on the parent side of a complete developmental evaluation. Yesterday I watched as my little boy blew the socks off the evaluators. We didn`t get "developmental levels" yesterday, but what we did get was so much better in my opinion. We got to hear a lot of positive comments anout what Gray IS doing, "wow look at the quality of his movements"' "I can't wait to see this kid when he is three" "his language and social skills are incredible", "I don't know what you are doing with him, but keep on doing it","he is doing great". As Grayden's parents we are well aware of the things he "should" be doing according to the scales and compared to his peers. However; we don't need to be bombarded with hearing about what he can't do. The most important thing to us is what he is doing and in what quality and going from there. Today that is just what we were told!
Yesterday was day one of our three day evaluation for Grayden's MOMS study follow up. The morning was spent with a developmental pediatrician who did an assessment as well another professional who completed the Bayley and Peabody developmental evaluation. Austin and I also had to complete some questionaires regarding our feelings and such and then Grayden had an xray to check for scoliosis of the spine. An interesting little tidbit that was confirmed during the eval is that Grayden reacted to sensation on his feet at all points but not on his butt. The pediatrician said his sensation is similar to kids with a lesion around the area of S1. Neither professional was allowed to know if Grayden was part of the fetal surgery group, they also were not able to know his lesion level. When we arrived we had to undress Grayden so that they could cover his scar completely just in case.
It is so fun to be back in Philly and to get to see all of the amazing staff at Chop. The emotions are so diferent this time around. Feelings of gratitude that we were able to be a part of this and that we are surounded and supported by so many professionals that are passionate about tyhe lives of people with sb and their families.
As we sat in the waiting room yesterday waiting to get to see some of the staff and as I looked around at some of the couples that were waiting I couldn't help but wonder if they were new parents to be of a child with an. I so badly wanted to go over to them and take away the pain and worry that was written all over their face. I wanted to show them Grayden and to tell th that their baby was going to change their lives inane wonderful ways. I'm so glad that part of our journey is over but do glad that we were able to have the experiences that we did.
Grayden's 9th Birthday!
4 days ago