Marathon Week

I feel like I just crossed the finish line.

It wasn’t an easy race either. I put in a lot of sweat and tears. I had to walk part of the way. And I got pretty beat up by unexpected hurdles along the winding, rocky trail.

It was a LONG week. It’s Friday evening and I just finished up an appointment in my home with yet another case worker. She left me a big binder of more paperwork to do. When I closed the door behind her I truly felt like that marked the end of my marathon week. Now I sit here in a daze trying to recount everything that happened.

We start out on Monday mornings with N’s feeding therapy. It’s not the best thing for me to be doing at the beginning of my week because I take such a big emotional hit from it right out the gate. But hey, it’s the time she has available in her limited schedule. I’ve said before how much I love and respect our new therapist, Anne. However, I hate feeding therapy. Hate is not even a strong enough word. He’s just not making any progress. Maybe I’m not patient enough or observant enough but it’s so hard for me to not be wondering if all the hours we’re putting in is going to make any difference in the long run. I don’t have any guarantees that he ever will eat and she never makes me any promises.

The only change I’m noticing is when Anne pulls his jaw up and forward ever so slightly. She’s taught me how to do it and it really is quite amazing how his breathing changes when it’s pulled forward just a millimeter or two. He sort of freezes up, stares at me, and doesn’t swallow but I can tell – I can hear – he breathes much easier. It seems so inconsequential compared to a typical developing child who breathes and eats just fine. Through this exercise she is ever so gently opening me up to the idea of a jaw distraction surgery. Yeah, I said it. We haven’t even met with a doctor again. In the NICU the craniofacial doctor didn’t think jaw surgery was called for at that time. I’m learning with N, however, there are very few closed doors on “old issues” and that we will continually be revisiting things we thought we had done our due diligence on already.

I recovered as best I could from feeding therapy. It helped to see a friendly face of a mom I know from my former life in the waiting room and afterward we enjoyed a picnic lunch and playground visit just outside of the new Thinkery Museum. I was going to take the boys to the museum but it’s closed on Monday. Too bad because that could be our big reward for making it through sheer agony that is therapy. Honestly, when I say that I think it’s a way worse experience for me than it is for N. Even M is a pretty good sport.

On Tuesday morning N had a follow-up with his urologist. N has to regularly to go the urologist for repeat kidney ultrasounds. This appointment was long overdue because his spinal surgery threw off the cadence of our scheduled visits. I like the ultrasound tech a lot because when I ask him questions he tells me everything he’s finding. So I already knew going into the visit with the doctor that N’s right kidney has basically stopped growing – it’s only slightly larger than when he had his first sonogram in the NICU. This time it was visibly smaller even to my untrained eyes on the screen. And the left one is far from perfect. It has hydronephrosis, literally meaning “water inside the kidney,” due to something obstructing the flow of urine through the kidney. N needs a separate test to confirm he’s still refluxing urine back up into the kidney, but based on the hydronephrosis he probably is. Anyway, it’s a mystery, N is a mystery, but no doubt all of these no-peeing-in-forever problems MUST also have something to do with what is going on, or not going on, inside those little kidneys of his.

N’s urologist who is a major minimizer and says “let’s just wait and see” more times than I can count during a visit said this time about the small right kidney, “That’s not something I like to see.” So “wait and see” has morphed into we need to send him for a nuclear medicine test and figure out what is going on in there. Either it has been infected and full of scar tissue or congenital. My biggest hope is that his tiny kidney can just stay in there and he doesn’t need surgery to take it out. And also that the left one starts doing a good job, completely takes over, and ultimately that he outgrows the reflux and can stop taking antibiotics all the time. If the reflux doesn’t correct there will likely be a surgery for that too. So in a couple weeks we’ll know a little more to that mystery.

On Thursday we went to a new opthamologist for a second opinion on N’s eyes. Between my husband’s medical knowledge and my mommy intuition we were pretty confident something is going on that the first doctor wasn’t diagnosing. In fact, last week at the orthopedic doctor (that’s a bone doctor people) she said, “Have you had his eyes checked?” So even the bone doctor is noticing something that our eye doctor is not. Within a minute of seeing the new opthamologist he said, “He’s using his left eye way more than the right. His right eye is starting to drift out.” Given that news we need to start patching his eye for three hours per day when he’s awake to start strengthening the muscles in his right eye. Not the end of the world. And really we’re hopeful that it will start to fix itself so we can avoid another surgery.

Those were the big hurdles. Notice all of my big hurdles in one way or another involve that dreaded “S” word. Surgery. I was kinda, sorta hoping that the spinal surgery would be it for this boy. That we would arrive some place with this kid and say, “Hey, he’s not normal but we’ve learned our normal and we can function with this and enjoy our little life outside of the hospital and doctor’s appointments and tube feedings.” Bahahaha!

There were some easier parts of the week – those times when I was actually enjoying this meandering journey. I started N on solids (via tube of course). He’s tolerating them okay so far. I do gravity feeds so I can watch them go in and his reaction to them. Both times he’s gone from hungry to satisfied fairly quickly. He’s refluxed up both feeds so he now knows what carrots taste like. And nobody tell Anne this, but I did give him a little bit on a spoon. He didn’t swallow but I could see him playing around with the flavor on his tongue. That makes a mama happy.

N had a great therapy session on Thursday afternoon. He’s really doing some nice things with play therapy. What made it especially sweet is that M wanted to be a part of it. The therapist incorporated big brother beautifully and he was so proud to be the helper teaching N how to use a toy car, push buttons on baby toys, and give high fives.

Date night with my husband on Thursday. This one was unexpected but oh so needed. My dear friend Jan who should be so exhausted from all the time she’s spent with her own grand kids lately graciously came to love on my boys Thursday night. We went and enjoyed a margarita and dinner at Chuys and then wandered through Barnes and Noble like normal people do. It was a simple and satisfying time together. Reminded me of dates before kids.

Finally, Friday morning we got to go to the new Austin Aquarium with a friend and her kiddos. It was the first thing this week, aside from preschool, that was completely and totally all for M. It was the thing that N had to tag along to instead of be in his crib napping. Despite the fact that I did get a couple of funny looks on his feeding pump, I felt like the normal mom of two dragging along the second child for the sake of the first.

So it hasn’t been all awful and hard. I have to remind myself of that, because when I’m tired I let the bad outweigh the good. The frustrating trump the effortless. And the anger steal from the joy.

Good. Effortless. Joy. That’s what I need more of. And it’s there, even on the hard miles.

“I have fought the good fight, I have finished the course, I have kept the faith.” – 2 Timothy 4:7

Speaking of races, don’t forget here is the direct link to sign up for “Team Nathan” in the sMiles4Sammy 5K/1K Family Fun Run!

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!

#eyes #feeding #kidneys #surgery

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