We are now in waiting mode. We received a 4 page report from the general geneticist that was basically a recap of everything we discussed. But there is some good news. Out of the 14 blood tests sent to a lab, results for 5 of them came back as negative or within normal ranges, just as the dr had suspected. From what we could tell, the proxisomal test the "scary" one - Zellweger's, came back negative. So we are waiting to get more results and hear from the metabolic geneticist.
In the meantime... Erik went to his first occupational therapy session. He did great, but she made him work. He worked on grasping and transferring from one hand to the other. He also worked on moving from sitting to his knees. He got frustrated but he did good overall. And now all week he's been making the same movements from his bottom to his knees. Not fully onto his knees but making the movements to the position. Very good stuff!
Erik continues to "awaken". We are so impressed with his interaction and communication. We have been a little frustrated with his weight gaining, but we are keeping the hope that he is making progress. We have learned through the allergist that when our diets change and our bodies are getting rid of the "bad" stuff, they will lose water and fat. So we were reassured it was "okay", but it's hard to feel ok, when we've had to think about his weight since he was born. That was last week... this week he seems chunkier and feels like he's heavier. Does this happen to everyone or is it just us?
Anyway, not much to report, but Erik is doing great and we are excited to see what else he can do!
This is a great way to share, Thank you!
ReplyDeleteTammy and Bob
1st therapy session...how unbelieveable :)
ReplyDeleteWay to go my buddy Erik...that is so cool-one hand to another and working from sitting to the knees--I am so excited. You tell the occupational therapist that your Auntie has trouble going from her bottom to her knees too!!! I'm so proud of him...we'll take the tiny steps...just like Jesus, he rejoices with our tiny steps. Summer Joy and Sean thank you both for keeping this blog, what an awesome way to keep us all informed.
Love you all....Aunt Marie