Wednesday, August 3, 2011

Bi-anual Metabolic Clinic Apointment

 Yesterday Gregory had his appointment he has twice a year at the C.R.S. (Children's Rehabilitation Services). This is where is team of doctors are for his Galactosemia. Tommy and I dread this appointment every time because you cannot get out of there in under 2 hours. You wait in the waiting room. Then they weigh, measure his height, circumference of his head and blood pressure. Gregory has developed this fear of doctors all of a sudden so this whole part was very traumatic for him. 

We get in the room and wait. Then the nutritionist comes in. This time we got to meet Candace. She is more new there and we hadn't met her before. LOVED her! Very sweet and knowledgeable. Has a heart for Galactosemia which is such a blessing. I have a feeling she will come in very useful in the future. And hopefully I for her. 

Then we wait. Then the geneticist comes in. There are two . . . Dr. Amato and Dr. Alek. We saw Dr. Amato. He asks all sorts of questions to us and Gregory about what he can and cannot do. It was cute . . . Gregory sat in the chair by us and "tried" to talk to him like an adult. It was really cute. So, we just talk and then he checks his eyes, ears, nose . . . all normal doctor things. Reflexes. We talk about the issues we've been having with Gregory. Side note . . . during all this his psychologist pops in and said the school district denied him be re-evaluated because he wasn't "severe" enough. But they think Gregory would really benefit from some sort of therapy for a year. They said he's a fast learner . . . like when he has the speech, he progressed in such a short amount of time. So, Dr. Amato is going to send in a letter recommending he be re-evaluated. 

That was about it . . . the appointment in January is when the nurse comes in and social worker and psychologist. Ugh! No fun. But Tommy and I are always reminded when we are there how blessed we are with Gregory. This clinic sees all children's with a wide range of things wrong. Its so sad. We are so blessed he "appears" normal, doesn't have a breathing tube and can walk. Thank you Lord. And thank you Lord that this is all covered by the state. Such a blessing! 

All in all not too bad . . . we made it out of there in just about 2 hours. Then it was home to make dinner. Ü


  1. Hi, I just found your blog through a friend on fb. I have two of three sons who have classic galactosemia. They are now 15, and 12. I don't have a blog but I am on fb as laurie Vanderzwaag

  2. Hi! I'm so glad you found my blog! And contacted me! I unfortunately do not do face book. :( Email me! I'd love to hear about your boys and what your experience has been. Look foward to hearing from you!


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