Nectar Thick

As I sat here in bed preparing to write this, it just occurred to me how many things I simply didn’t know existed before Kiran.  Did you know they sell a powder or gel thickening agent to make liquids easier for people with risk of aspiration (otherwise known as “going down the wrong tube”; taking food or water into your lungs) to swallow effectively?  True story.  I ordered some from a company yesterday, in order to get the gel that Kiran’s feeding therapist uses.

Good thing I did, because that is our big news!!!!!  First, minor backstory.

You might remember Kiran recently got a swallow study.  This is the third swallow study he has gotten in his lifetime – and the most effective – even though we only got a few swallows, we could get a sense of what was happening.  Kiran does aspirate small amounts, and the study showed liquids were an issue for him.  When his feeding therapist got the report, we were told it was best to stop giving him liquids at home until we could trial with her to see what might work best (and most safely) for him.

It’s not that he was ever a big drinker.  I had been trying with various things – sippy cups, the honey bear cup, medicine cups – but I was lucky to ever get one drink in him.  Like with everything, I would offer it to him.  We landed on just trying with a sippy cup – mostly playing with it or biting it – occasionally small sips would be taken.  But I stopped completely after the swallow study.

And we have been trialing different things in feeding therapy the last few weeks.  Flavored water, carbonated water, water thickened to what they call nectar consistency….The goal was to figure out what would be safest for him; which type of water would help him be most aware of its presence to swallow effectively.  And today, we got the green light: We now get to try nectar thick water from a spoon at home.

It is crazy the things we celebrate along this journey!  It is so nice to have clear guidance on how to safely get him to practice drinking.  I feel like the swallow study really helped us be able to hone in on what might help Kiran move forward in a safe way.  And I’m excited for my giant pump of gel thickener to get here so we can get started!

In other very cool therapy news – We practice standing a lot in physical therapy.  The PT supports him a little bit at the waist while his hands are propped up on a table, and we distract him with toys and songs and conversation.  Today, he stood this way, without even attempting to buckle his knees, for ALMOST TEN WHOLE MINUTES!  I don’t believe we have even come close to that mark before!!!

In a couple of weeks, we should know if he gets a spot in the cage for the next session starting in March.  Fingers crossed!

Progress.  Steps forward.  We might be shaky, but we are still moving.

Back to Reality

It is amazing how much I can talk myself into putting off until “after the holidays”.  Then, yesterday, it’s January 2nd, and I feel like I have to accomplish all 876 things I have been putting off.  There are specialists to email and appointments to make and prescriptions to get and therapies to attend and medical appointments – yes, medical appointments – this month!  I feel like it has been SUCH a long stretch (and it HAS been)…six months!  But January is the month we see almost all of Kiran’s specialists (save ortho and genetics).  This means two trips to Iowa City – because there is always that one appointment you can’t quite make work on the same day as all the others.

I can’t honestly say I’m ready to dive in and deal with this side of things again…but I will.  And I am hoping to update the blog more frequently this side of the new year.  In fact, I am hoping to be blogging with some good news after feeding therapy tomorrow…so stay tuned….

Also, for those not friends with me on facebook, here’s my new year’s post:

2017. As the calendar rolled into this year, I had a very different vision of what my life would look like today. I am no longer going to guess what the year ahead might bring, because most of my adult life – whether because of choices I’ve made or cards life has dealt – has not gone as envisioned.

Instead, my focus will continue to be to live an honest, healthy life. A big focus is to be the best Mom I can be for this little man right here. It’s not always as clear-cut a path as you might imagine. But I’m cutting away the dead branches and scooping off the snow…we are traveling the road, together. Finding our way inside a new family dynamic, together.

This holiday season has been bittersweet. No. Honest life. It’s been downright difficult. Really gut-wrenchingly HARD. But we are here. We are making it. And today is a new day, and tomorrow will be a new day…and the day after that too. And we will just keep putting one foot in front of the other – I will continue helping Kiran learn how it feels to take a step forward, even as I continue to trip and fall myself.

And it will be good. Even in the hard, it’s so good.

May 2018 be hard and good, as you work to find or follow your own path. If you get lost or wind up flat on your face, you’re in decent company – and I will always, always come walk alongside you – or lay down next to you – for as long as you need. Because I am learning that those who also embrace the honest, healthy life … well, we need each other. I continue to be surprised who is willing to join me facedown in the mud and suffer scrapes alongside me … so know that I’m willing to do that with you, friend.

Let’s walk together in 2018.