Evaluations and Tests and Results, Oh My!

The last two weeks have been very full! Stanton and I toured the Children’s Center. This is a school for children with developmental delays in Hattiesburg. It sits on the campus of the University of Southern Mississippi. Our behavior psychologist works here a couple days a week and she connected us to the center. It’s beautiful and filled with amazing therapists and families. Stanton apparently felt right at home as he independently charged off down the hallway peeking in windows and doors. He announced that he wanted to go to school! In order for Stanton to attend this special school, he must be released from our local school district. This is where it could get sticky.

Last Friday I took Stanton to his public school eligibility evaluation. This is a standard process for kids who are receiving early intervention services as early intervention stops at age three and the public school picks up services at age three. Stanton qualifies for special education as he showed delays in motor skills, self-help skills and articulation. However, he tested very high in cognitive skills and vocabulary! Very proud of this accomplishment. Once the official evaluation is all typed up, we will be called to meet for an IEP (Individual Education Plan). The IEP sets goals and expectations for the school year. I think this is where the Children’s Center enters the picture as a placement option….but I’m really not clear about this yet.

Stanton also had a swallow study. We’ve been practicing for this for a good two months! Our sweet speech therapist has even taken Stanton over to radiology and let him look around and get comfortable with all the computers and equipment. He did GREAT! He sat in a chair all by himself and licked all the foods offered with Barium mixed on them. It really was just perfect. And – his swallow is normal. He has a slight hesitation with solids, but the therapist feels this is more a developmental delay than a swallowing issue.

Last Saturday night, Stanton had a pretty bad reflux episode and aspirated. So, this week we’ve been dealing with that fall out. His whole little body just shuts down. So, he’s back on mega doses of antibiotics and steroids. Thank goodness for grape flavored medication and dissolvable steroids!

Today our geneticists personally called. When I realized it was the doctor himself, I became immediately nervous. I’m learning that if it’s nothing serious, a nurse calls to relay the information…but if the doctor calls – it means something is up. Dr. Martinez explained that Stanton’s genetic lab work drawn in December returned abnormal again; both his urine samples and his blood work. The abnormalities appear in metabolic areas including fatty acids, organic acids and carnitine levels. He said that he would like for us to see a metabolic geneticists as they specialize in metabolic genetic disorders. He feels that Stanton fits the profile, but metabolic disorders are outside of his area of expertise. Because it’s Friday, the referral and process will begin next week.

One side of my brain is thrilled and excited to have a possible answer – hope for treatment and a real diagnosis. The other side of my brain knows that this could change everything and a metabolic disorder is not something one outgrows. My mother’s heart is deeply torn; full of questions; grieving the unknown; contemplating what future a possible metabolic disorder diagnosis holds for her son. Jeremiah 29:11 promises God’s plan for a future and for now, I must cling to that promise.