Final Stretch of Summer and Specialist Appointments

It’s the final stretch. Typically this is the time of year when not much is happening. I’m supposed to be enjoying the final free days of summer at the pool and buying up back-to-school clothes and supplies.

Instead we’ve been at the doctor. Lots. Since we got home from vacation in early July we’ve been to the pediatrician, ophthalmologist, cardiologist, gastroenterologist, orthotist and orthopedist (those are two separate appointments at two separate places by the way).  In the next couple of weeks we’ll see the allergist and ENT.

Two of these appointments in particular have been especially hard for me. Cardiology and orthopedics. Neither of which I anticipated. Last summer both of these doctors said something to the effect of, he looks good, just follow-up in a one year to make sure everything is on track. Going in I was thinking, We are so on track.

Nathan sees a cardiologist because he has a couple of heart defects that we are monitoring. A couple of weeks ago we went in for a follow-up EKG and ultrasound of his heart. The ultrasound revealed that the tiny holes function like an ASD (atrial septal defect) are not significant and should not cause any problems. What is potentially concerning is that his ascending aorta is enlarged, possibly an aortic aneurysm. And it’s grown since his last follow-up appointment. The reason this is a problem is that if it keeps growing he is at risk for an aortic dissection, which as I understand it is when the pumping blood tear through the vessels, causing the aorta to rip. Just like as sounds, the outcome for that is not good. There’s no immediate threat, just a growing threat to his heart and mine.

Nathan also sees an orthopedist. She has been watching his wonky foot (that’s what I call it) since he was a tiny baby. We got an official diagnosis this week called Skew foot (so basically wonky foot thank you very much). Seriously though, this is a type of flat foot. If you look closely at the X-rays you see that there is a deformity in his foot that makes it shape like a z connecting the forefoot, midfoot, and hindfoot. The doctor told me that it is typically syndromic and that we need to see a foot specialist. She said a foot specialist would be better able to talk through treating this condition with things like serial casting… “And surgery,” I said. “Well yes, there are lots of options.” After we finished looking at the X-ray I put my hands in my face and gave a little sigh.

The doctor was really sweet and said, “Try not to worry about it too much.”

So what have I been doing? Worrying. I’ll fully admit to you that it’s not in my nature to let it go and trust that God has a plan for what’s going on in Nathan’s mysterious little body. I’m struggling to surrender to that right now. Especially since we got this new diagnosis right after I wrote last week’s post, I Think He Will Walk. The irony.

My  internal response initially was, No surgery. Nope. No way. He’s well on his way to walking that would majorly mess things up. His OT lovingly pointed out that I don’t want him tripping all the time. So no, I don’t. But we don’t even know if he will be tripping or if he’ll just be walking wonky-like. Maybe we can live with wonky-like. I don’t know?

My goal, my plan in being a responsible parent was to knock out these specialists appointments, hoping that Nathan would graduate from some of them. That doesn’t seem to be happening. In fact, more are getting added to my already full schedule.

It feels like he is, or things are, getting more complicated. I haven’t even given you the update on his bladder and kidneys. Let me summarized that by saying it’s another case of follow-up in six months. That’s the challenge with modern medicine. We know more, but yet we so don’t know.

The last week it’s been a fight for me to stay in the moment and not flip into turbo mom gear of researching fanaticist and hyper villigant interventionist. I’m trying to rest in God’s grace for each day. Even though Nathan’s blood pressure has been high which is concerning for his heart condition. Even though the handout the doctor gave me on Skew foot says that if he needs an operation it would involve completely reconstructing the foot, I am breathing deeply in the fact that today we are good. We’re good. Today we had breakfast in our jammies. Today we went to the pool as a family.

The truth is that none of the information we recently received is going to dramatically change how we treat him medically today, tomorrow, one month from now or even six months from now. It’s hard to know. Nathan’s body is made so differently than most people that he perplexes the experts. They learn different information through their testing, but aren’t able to take immediate action of his issues because they are still revealing themselves. I’ve been told that people with Cri du chat syndrome age quicker. I can see why. I think their mothers do too.

This life is not a sprint like I would want, but a marathon. The last few weeks of summer have been about hitting my stride and running to finish this last stretch well.

Up this week: Four hour food challenge at the allergist. I’m not worried though. We are professional doctor visitors. We got this one, especially because a sweet friend offered to take the big kid for the full four-hour appointment. Bless her.

Before I shaped you in the womb, I knew all about you. Before you saw the light of day, I had holy plans for you.” – Jeremiah 1:5

Also, Skew foot is not really slowing him down. He’s pulling up on everything all. by. himself.


My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

#cardiology #orthopedist #specialists #urology

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