IEP

Gregory had his IEP meeting a few weeks ago. All in all it went really well. Kind of big one since this is the one that will carry him into Kindergarten!!! Cannot believe my little boy is going to be in Kindergarten!!!! 

I'll try and give you just a general idea of how it went. Although Gregory has made progress, he is still delayed cognitively, in speech articulation, and motor skills. 

We all worked together to come up with goals that will best help Gregory in all these areas. The IEP was very detailed so his new teacher will know exactly how to best help Gregory. He will benefit from the use of a part time aid. He will receive speech therapy and Occupational therapy. I'll keep you posted on any new information!

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

He passed!

Yesterday Gregory went to get a  speech and language evaluation. It was done @ "Fiesta Pediatric Therapy". Come to find out they do all therapies so I put a call in for his doctor to get him an OT evaluation.

It took about 30 minutes or so and Gregory passed! She said his articulation is age appropriate! His ability to receive information was at a 85 and anything at a 85 or higher is average for his age. So, he's right at the cusp. His ability to express information was at a 95 and again, anything a 95 or higher is average. So, at the cusp again. She said with him starting preschool, this will only improve. :) So, yeah for Gregory!!!! One thing down.

Gregory

Gregory is a very active 3 year old little boy who his daddy and mommy love so much! Gregory was a little angel the first year of his life and since then has kept mommy and daddy on their toes. He is now "strong willed", "spirited", has "sensory processing disorder", has had speech therapy and some occupational therapy. All of these things are hard to deal with now but will make him such an amazing person later.

My question is . . . which of these things and things to come has to do with Galactosemia?

I hope to use this blog for other galactosemia parents to share our experiences and give each other support with this very "unknown" disease. That might be the worse thing about galactosemia . . . the unknowns. :(

My hope it to also use this blog as a communication tool between parents to share our knowledge. I have yet to find anything like this on the web. I will share my knowledge and hope to learn more from others.

There are many other things that define Gregory at this moment that are not related to Galactosemia . . . his love of cars, sponge bob, books, trucks, running out side, fishing, bass, music (both playing and listening), dancing, imitating, acting, being funny, and many others. He is such a special boy in every sense of the word. We love you Gregory!