May 5, 2009

A Better Day Tomorrow

"Sometimes we just have to get through the crappy day to hope for a better day tomorrow..."
--Carrie Ostrea, Mom to Hannah, 9 months old with Neuronopathic Gaucher's Disease

I started the day off with high blood pressure due to trying to schedule Bertrand's endocrinology appointment. Bertrand's Adrenocorticotropic hormone (ACTH) is VERY high. His doctors want him seen by an endocrinologist who'll be able to see whether this is ACTH resistance or excess, and do an ACTH stimulation test. Sound simple? Ha!

The first endocrinology office I called, the one Dr. Longo recommended, specializes in diabetes. They wouldn't take Bertrand until JULY 7th. An appointment over two months from now for a child with dangerously high ACTH?! And better still, that was a consult ONLY--the actual ACTH test would be scheduled some time after that. A possible 4 months? I don't think so.

So, I called another local endocrinologist. This one specializes in disorders of pituitary, thyroid, growth & bone (no diabetes, PCOS, female hormone management, or Fibromyalgia). Sound right up our alley? I haven't heard back! But after this phone call, I was running late for B's appointment but I called my father to rant.

My father calmed me down. He told me he'd do what he could. He shot off some emails to see if some of his old colleagues at the Medical College of Georgia or some of our family friends in Augusta could see Bertrand while we are in Georgia next week. My mother also called her friends in Augusta to see what she could do. We'll see.

Bertrand and I managed to make his occupational and physical therapy evaluation at Shriners on time. We enjoyed meeting Chris (OT) and Cindy (PT) a great deal. Chris showed a great deal of interest in Bertrand's feeding abilities, while Cindy focused on what we could do equiptment wise. I was disappointed to hear Cindy emphasizing a stander for B. I feel like a gait trainer would give him mobility which would make him happier, but oh well. :( Kirsten sides with me.

B did not behave true to character during the evaluation--in part because it interfered with his nap and he is finally getting his full neurontin dose. He was more interested in... cuddling. "Snuggly" and "sweet" have never been used to describe Bertrand before. I mean, that's fantastic, but any one who has ever met him knows that's not Bertrand. He likes to move. He wants to be everywhere, but today he was a lump. I'd like him to find a middle ground.

When we got back home, I got an email from Dr. Samson-Fang (a doctor who honestly cares for Bertrand) recommending that we see Dr. Rob Lindsay. Dr. Lindsay is in private practice so his schedule could be more accomdating. And, what do you know? It was. I set an appointment for B with Dr. Lindsay on June 1st. If nothing else pans out, June 1st it is.

Some days are better than others. Let's just say that there're a heck of a lot days better than today.

1 comment :

  1. I don't remember how I found your blog, but I do enjoy reading what you have to write. I find myself thinking of Bertrand often, and I shoot up prayers for your little man.

    I know FULL well the days you were talking about in this post. Some days are just so tough both physically and emotionally. They're exhausting. My 14 month old son has mitochondrial disease...diagnosed through a muscle biopsy. Some days are full of triumphs, and some days are complete struggles. But through it all, I could not be more thankful for this little man in my life who has completely stolen my heart. I'm sure you can relate.

    Anyway, thanks for sharing all of this medical info. And I hope that you can get that endocrin. appt soon!