Droopy Jud-y Update

We took Judah to Children's this morning to be tested for Myesthenia Gravis. For anyone else it would be a simple procedure. Review the risk factors, answer all the medical history questions, get the injection, monitor for 60 minutes. Done. Not quite that simple for Judah. The drug that is injected into the muscle can cause a decrease in heart rate and/or nausea and vomiting. When your body doesn't produce cortisol (your body's answer to stress) risk factors - even relatively minor ones - take on new meaning. Judah needed to have a stress dose of his "stress" medication intravenously before he could receive the drug. It's just not fair. Nothing about his life seems fair. Usually I don't think about it that way; but when your baby is crying in pain while the nurse puts in the IV and you have to hold him down, and you're trying to talk soothingly and reassuringly in his ear and it's just taking forever and he's just hurting and doesn't understand why...well, the concept of "fair" comes to mind. Gah. It just really sucks sometimes. I'm thankful that it only took 1 stick this time. I'm thankful for caring nurses who don't like to hurt their adorable little patients. But, God... It's not fair that things for Judah have to be so complicated.

OK, I think I'm done whining. For now. I mean, I really do feel this way, but I think I'm over it...momentarily. Anyway, praise the Lord that Judah didn't experience any of the possible side effects of the drug, and the test actually came back negative!

So... It's great that Judah does NOT have this disease; however, his ophthalmologist strongly believes that he has some kind of neuro-muscular problem which is causing the droopy eyelids, as well as his inability to move his eyes to the right. We've had to re-add his neurologist to "the list", and will be seeing her in a couple of weeks. My prayer is that we can resolve this quickly - whether it's something in his brain or just the need for a surgical repair - because Judah's obstructed vision is really starting to get in his way. He's started bumping into things when he crawls. It's only cute and funny until he conks his head and hurts himself.

Cool thing that happened today...

I have met so many nurses that have kids with special needs, and today was no different. This nurse, though, has a son with similar challenges and even a couple of the same diagnoses as Judah! We were able to talk mom-to-mom about the same doctors and issues. We were even able to laugh about some things that "normal" people just don't laugh about. It was...refreshing. Thanks for that, Lord.

Not so cool thing that happened today, but something to add to Judah's Mess-capades:

Judah's IV was buried under a mound of tape while his hand was placed on a "board" and then had this special sticky stuff wound around it about a hundred times. Pretty secure. Unless your Judah and have a determined spirit and an insatiable desire to chew. Little Champ just pulled that IV right out, leaving all of the tape and "board" securely in place, and went right to his mouth with it. Ew. I caught him just before it got there. Phew.