A Week and A Day

I generally write about our appointment days while sitting in the car on the way home afterwards. That is why it is very weird that our appointment day was one week and one day ago, and I still have yet to write about it.

I was exhausted afterwards. Kiran was exhausted afterwards. My dad was probably even exhausted afterwards, because it can’t be easy to entertain yourself for that long when you can’t go anywhere or do anything (and aren’t allowed into the hospital to go spend time eating, which is one of his things usually).

For those who were following along on facebook and wondering how the urine collection went…not well. The bag they gave me really didn’t work well – he pretty much got pee all around it with a tiny amount actually inside it. I had to put these cotton pads in his diaper – twice – throughout the time we spent at the hospital, making our very last thing of the day delivering urine to oncology. Weird.

We had one of the best experiences getting labs drawn that we have ever had. This is one of Kiran’s least favorite things. I requested the lidocaine with the j-tip application, because this is a trick we learned a couple years ago when he first got to experience it. And they got the needle in on the first try (he’s always a tough poke!) and were able to get all of the blood they needed quickly. The worst of it was Kiran gets mad when you make him hold his arm still that long. He grimaced a little with the initial pinch of the needle going in, but he didn’t yell or cry out or sweat or anything…but he did still need a mama hug immediately after.

The oncologist essentially got caught up on what we have been seeing, and it was decided if all the labs come back normal this time, we can wait six months before coming in again. At this point, all of the lab results that have come back are normal. This is a relief and not all that surprising – his symptoms remain stable, and no new ones have popped up. Still, I like normal numbers!

We saw a new ophthalmologist to make sure we were plugged into vision services (we are) and to have an extra person to help coordinate and make a plan for the accommodations Kiran may need, especially in the classroom with kindergarten approaching. At least that is my basic understanding of why Dr. D had us meet with him. He did one vision test on Kiran and deemed him to have “usable vision”. Not normal vision but usable vision. I feel we already knew that, but it’s nice that the test showed him that – and also, it was consistent with the test results Dr D has gotten in the past with this specific test.

Next came the eye appt with Dr D that really stretched us both to our limits of patience. He did a pretty good job of actually putting his chin and forehead on the contraption so Dr D could get a quick look into his eyes, so she decided we needed to try to get some photos of his eyes and then get a better look at his refraction (I think) – both of which required him to put his chin and forehead on contraptions. He doesn’t like to do this. It is not set up well for a child as big as he is to be in a mama’s lap to do this. He doesn’t lean forward well. He is strong. And stubborn. I was sweating by the end of it. That’s not even a joke.

But we got decent results for everything the doc wanted to see, and everything is looking as we know it does for him. The only bummer that came from this appointment is we had to start dilating drops again. Kiran was born with microcoria, which is a fancy way of saying he has small pupils. When we do the dilating drops every other day, we kinda train the muscles of the eye to bring his pupils to a larger resting place. At least that is how it worked last time – maybe 2 or 3 years ago – when we had to do them for a period of time. I am crossing my fingers they will do what we want them to in the six month period before we go for our follow-up. Kiran HATES eye drops. Like, I mean, pushed me away when I tried to hug him after they gave the dilating drops at the appointment…HATES. We are doing okay with it, but he gets really stiff, tries to push me away, and shuts his eyes tight tight tight. I have only given them three times so far because of the every other day routine, but I have already learned I just have to harden my heart and get it done as quickly as possible. It’s best for everyone. Not our favorite thing but just another one of those things we have to do.

Overall, as usual, Kiran was awesome. He wore his masks (We have to change them out every half hour because they get wet) like a pro and didn’t get too frustrated with me about them. He was brave and mostly cooperative and continues to show strength I can only begin to fathom. I am so proud to be his mama, all the time – but man, he makes me proud with how he handles these appointment days.

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