I was dreading this appointment. Until now, Mr. Temmie and I were blissfully living in denial. Little M shows no physical signs of DMD so in our minds he didn't really have it. Every once in a while we would take a trip to reality, but it usually ended with both of us in tears, hugging our little boy and wishing like hell that this wasn't true. So this appointment was basically a trip to reality. I bawled the whole way there. I don't like reality.
We arrived at our appointment and got checked in. I had barely finished his paperwork and we were called back. They took vitals and weighed and measured Little M. He's clocking in at 11 lbs 11.5 ozs. Chunkster!!! I forgot to ask how tall he is. Oh well! I can measure him at home.
Anyway, they did the vitals and took us to the exam room. We were a little surprised when the doctor came in less than 5 minutes later. Aunt Liz and I both told him how prompt he was.
Doc sat down and basically said that he knows I'm wishing there was some mistake, but the reality is Little M 100%, for sure, no doubt has DMD. So this appointment was to answer my questions, get a base line and discuss the next steps. He also apologized for the lack of communication during our last hospital stay. Overall I was really pleased with this guy. Little M was too because he sat on my lap smiling at the doc the whole time. And of course his smile is so captivating that it kept distracting the doc. Such a charmer I have on my hands!
So where we are. Right now Little M is asymptomatic. Meaning he has this disease but shows no symptoms yet. I asked if that meant I could still live in denial. The doc said yes, for a few more months, but that's it. I thanked him and told him it was prettier in Denial and the food tasted better. I don't think he got my sense of humor. Anyway for now we will continue to raise our baby and focus on happier things like finalizing the adoption and his first birthday party. But we have to be aware of what is coming. Like delayed walking and delayed speech. We already anticipated these due to being a preemie. But we will work closer with the early intervention therapist to help those things along.
I did ask point blank if Little M will walk. Doc said he didn't have any reason to believe he wouldn't. He also said his goal is to keep Little M walking for as long as possible. Eventually he will be in a wheelchair. He will develop heart and lung issues. But the longer we can keep him walking, the later the other issues will start to develop.
Doc also said that 15 years ago this would have been much more devastating news. The medical developments that have happened in the last 15 years are amazing and there is so much more on the horizon. Who knows what options we'll have when M gets older. He also told us about a national study that we could join. It's a research study that follows DMD boys over their lifetime. Obviously these boys aren't enrolled until they are diagnosed. We got a jump on that part so our participation is even more helpful to the study. Maybe not for us, but for someone else for sure! So we signed up. By doing so we are also able to get genetic testing done to pinpoint the exact gene mutation. This testing is very expensive and will not cost us a thing as part of the study. And having an exact location of the mutation will help the docs be more able to treat Little M's DMD.
So overall the doc was great and left me with a slight feeling of hope that not all is lost. We'll still have many challenges ahead of us. But we also know we have one hell of a fighter on our hands and we're going to do whatever we can to help him.
Sittin' on Cousin Kate's lap after church being adorable. He was practicing talking. That's his new trick. :)
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