Bi Anual Metabolic Clinic Appointment

Last week We had Gregory's Bi Annual Metabolic Clinic Appointment. Its a very long appointment. We are seen by the geneticists, the nutritionist, social worker, and psychologist. Everything went pretty smooth all in all. I filled in the psychologist with everything Gregory has been going through. She wants to look at the possibility of Gregory maybe having ADHD. She said you can have this with out the hyper sensitivity part. I'll keep you all posted. Otherwise, he is a happy healthy boy! Praise the Lord!

Psychologist

On Thursday we went to go see Gregory's psychologist at his metabolic clinic. She wanted to meet with us after Gregory started his new school to look at the big picture and make sure no area in his life was being over looked. So appreciated that.

Main things from the meeting:

*Want to have his new teacher be more specific on what her "good" means when she says he's doing "good".
*To see what they are doing to help his social skills. To make sure he's learning how to act with others, ect.
*To look into the thought of him possibly having something like Autism or Aspergers. She didn't think so but thought it was worth looking into because if he does, then treatment for things would be approached differently.
*When parenting to focus on the positive and not the negative when disciplining. Instead of "don't stand on the couch" say "please sit down". Focus on what you want him to do. Give lots of praise.

I will meet with her again in June to see how all of this is going.

Galactosemia Day

 I just got this invitation from Gregory's Metabolic Clinic! How exciting!!!! I cannot wait!!!! Ü

 Galactosemia Day

2012

Your Metabolic Team would like to invite you to our first educational and networking event.

We are going to be presenting our most up to date evidence-based clinical recommendations, having a round table discussion for questions/thoughts, and time to get to know one another.

Please put this on your calendar- we would love to be able to share this time and info with

ALL Galactosemia patients in the state of Arizona.

When: March 22, 2012

            Registration 12:30-1:00pm

            Clinical Update 1:00-2:00pm

            Roundtable and Networking 2:00-3:00pm

Where: Phoenix Children’s Hospital Main Tower

            1919 E. Thomas Rd. Phoenix, AZ 85016

            7^th Floor Conference Room #

Questions:        Candice Candelaria, MS, RD                           Melanie Colville, MS, RD

ccandelaria@phoenixchildrens.com                   mcolville@phoenixchildrens.com

602-933-4363 ext: 83307                                602-933-4363 ext: 83306

Please RSVP by March 19, 2012

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