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Two Iowa City trips in five days isn’t my idea of a good time.

But. Let’s start with the good news. Because Kiran has had this flushing symptom for going on two full years now, I was able to notice a trend. Both last year and this year, the flushing is practically non-existent during the summertime. Hematology/Oncology doctor said that if this was a neuroendocrine tumor, we wouldn’t see the symptoms go away, certainly not seasonally. We should be seeing the symptoms slowly increasing or new symptoms adding on.

This is what I had hoped she would say and how I expected the appointment to go. As long as Kiran’s labs come back within normal limits (from what we’ve seen from him – a couple things have been high), we no longer have to follow up with her. We can contact her if we start seeing other symptoms or the flushing escalates, but otherwise a rare thing happened today: We took a specialist off Kiran’s team! Hurray!

Of course, we may have added one on, but hopefully only for a season. We saw GI today, and Kiran was officially diagnosed with chronic common constipation, not because of a disease (that part is good anyhow). Different from the last GI doctor we consulted, this one told us Kiran will likely need to be on a maintenance dose of some form of stool softening medication for the rest of his life. He was prescribed something different than what we tried last time, at my request. This means there is a clean-out in our future, starting tomorrow.

I am really battling myself with this. I feel like I have let him down – I have worked so hard with diet and exercise and natural remedies to get this under control – and ultimately, it didn’t work. I don’t know why this hits me so much harder than when medicine was prescribed for his heart function or eye drops are prescribed for his vision needs…why do I take this one on as a personal failure? I don’t know, but I’m trying to work through it so I can let it go.

The important thing is I recognized that despite my most valiant efforts, what we were doing wasn’t working. It wasn’t solving Kiran’s digestive issues. And it’s going to be so important to get that remedied prior to all day school. And certainly for his comfort.

Despite good news, bad news, neutral news, these days are hard. They always take it out of both of us, and likely out of our supports as well. So tonight, we snuggle, and likely go to bed early!

Unique Little Man

Long day in Iowa City yesterday, with a Genetics appt in the morning and an eye appt in the afternoon. We were lucky that we had enough time to take a break in between and sit at a nearby park for lunch.

It had been two years since we saw genetics, and I was hopeful more research would be available by now. We were told Kiran’s specific gene misspelling was one of interest, but only one more study has come available in the last two years. I haven’t taken the time to sit down and read it yet, but it is a study published in 2019 with only one participant, a male from Korea. It may or may not be the same patient that is in the study published in 2017 with five participants, three of which have Kiran’s exact misspelling.

From what the doctors said, it doesn’t seem we have any new information to help us know what might be ahead for Kiran. With this new study, that means only 3 or 4 kids worldwide, besides Kiran, are known to have this genetic condition.

So here’s something exciting. The fellow asked if we would be open to having her write up a report on Kiran to be published, since he has a unique characteristic not reported by the others with this misspelling: the congenital heart defect. His dad and I agreed, so Kiran will officially be a part of this body of research (albeit small so far)…and what excites me most is some other family, likely in another country (since we know all three known kiddos are from countries not USA), might be able to sit down with their doctor in a year or two and have NEW INFORMATION AVAILABLE.

The doctors were pleased with Kiran’s developmental progress, and we will now see them in a year’s time.

The eye appointment was long. It always is with dilating drops and now the doctor always sends us to attempt to get good pictures of Kiran’s retina and optic nerve. Dr. felt everything looked good and was excited – and thinks Kiran will do well – with his upcoming eye gaze device trial. She was seeing good attention and tracking. The bummer news is she still isn’t pleased with how small his left pupil is, so we now have to do eye drops every day for another six months (as opposed to every other day these past six months).

Kiran was a trooper, as usual, but definitely wore out. All he wanted was to snuggle with mama when we got home last night, so snuggle we did. We have a couple more big appointment days coming up, too, and I am hoping all of our updates are as uneventful as this one!

Touched Out

I haven’t been writing as much lately, and I have noticed with social media in general, I have been sugar coating our journey. Reasons exist for this that I won’t share, but it isn’t a place I like to be. I like to be as real as I can be about the good, the bad, the successes, the fallbacks, the light, the dark – and I just don’t feel like I can provide that at the moment, so I tend to not write. For those who enjoy our journey and my honesty about it – I’m sorry. The time will come when I feel I can again, and I look forward to it more than anyone.

Kiran has been struggling with something respiratory this week. He came home with it Monday morning, mild fever and all. No fever or sneezes since Monday, but he is still coughing a lot, stuffy, low energy…high neediness.

Kiran has never been someone who has required a lot in the way of physical touch. I mean – he LOVES his hugs now (and so does anyone getting them!) but as an infant, he honestly didn’t even want to be touched if he was upset. He wanted to throw his tantrum and just be left to do it. He does seek out comfort by way of physical touch more now that he’s older, but I don’t feel he’s very needy in this area.

Except when he’s not feeling well. And I have noticed it even more so this illness. He’s been pretty uncomfortable, and he really hates the coughing fits. He makes small little vocalizations that about break my heart, and even if I just leave for a few moments to use the restroom, he inevitably has a coughing fit and cries out for me. He has wanted someone with him, close, and he’s been insistent with the hugs/snuggles, not letting go.

Honestly, at this point, I am touched out. I’m overwhelmed. Thankfully, he is feeling quite a bit better today and is playing – and I’m washing germs out of all our sheets and blankets and resetting a few things. But it’s been a hard week. I’m behind where I should be with my class, one of the harder classes I’ve taken made even harder because it’s compressed into half the time.

The worry also takes it out of a person. We did consult his pediatrician on Tuesday and determined there was no reason to give him a Covid test at this point – we are simply cancelling all activities, following health guidelines, etc. With the fever going away after one day (and never being above 100.7) and no issues with breathing (which I have been watching like a hawk), it didn’t seem necessary. With his history of pneumonia, I have been watching and waiting for any downhill indications – fever returning or breathing becoming more labored – and for that reason, he has spent all week sleeping in his travel bed on the floor right next to our bed. I am hopeful tonight will be his first night back in his room since his wake-ups from coughing last night were minimal.

Self-care for me today is a shower and this blog – just writing to get it out there. I’m tired. It’s been a week.

I am thankful he’s managed this illness like a champ, and we could rest and recover at home. I am thankful I was able to slow down and provide comfort when he needed it this week. I am thankful I have learned to not completely overwhelm myself and let some things go for now – I will have to work my buns off, but I will catch up with school. This, too, shall pass. And it will be okay. Kiran can do hard things, and I can, too. As always, we journey together, and I am so beyond thankful for that.