November 4, 2014
Josiah had his appointment at Duke yesterday. For the most part, it wasn’t much different from any of the other appointments lately. They had Josiah do a variety of things to get an idea of his muscle strength, and we gave them a full history. Like the rest of the appointments, the doctors agree that he presents with muscular dystrophy, most likely Duchenne’s. The next step is genetics testing to verify. In my earlier post I mentioned that we were going to see a geneticist in October; however, that appointment was cancelled due to the referral to Duke. It was a long, emotional day. They drew blood and sent off for the tests. Basically, they will do test #1, which has the highest result rate. If that test does not show anything, they will move on to test #2. If needed, on to test #3. All of that to say, it just depends on the results as to how long until we have a definitive diagnosis; hopefully within a month or two.
The doctor wants Josiah to see their pulmonologist for a baseline pulmonary test. He also wants him to see their physical therapist at least once for a full evaluation, then, hopefully, we can get him into a PT locally. He has been on waiting lists at two clinics here for months.
I think that today, the reality of having had an appointment at Duke is setting in. Duke is where you go when something is really wrong. Something your local doctor and hospital don’t handle. Something bigger than the large teaching hospital in your area, with a wonderful children’s hospital, handles. Something big. Honestly, I don’t want to do this. I don’t want to know. You hear about people who know they are sick, but don’t want to go to the doctor because they don’t want to know. That always seemed understandable, but also silly. Of course you should go, because the sooner you know, the sooner you can start treatment, etc, even if it’s scary. Well, you know what-- as much as I want the genetic testing, I am ok with waiting a while for the results. Because every step takes us closer to having to fully embrace this new reality, and this reality hurts. A lot. And this diagnosis does not have any treatment. No hope for remission. No hope for improvement. Just a steady decline. And at this moment, I am broken.
2 Corinthians 4
Verses 8-9 We are hard-pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed;
Verses 16-18 Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal.