I feel like it has been a pretty intense week.  I am processing a lot of things related to Kiran’s care and some of the answers and new paths 2018 may bring for him.  For us.

Kiran was offered and we accepted a spot in the cage starting February 27th.  We debated, along with his physical therapist, about waiting until the fall – in order to give him more time to master standing so we could focus on more movement while in the cage – but ultimately, we wanted to move forward with this session.  We have so many moving parts in our life with the changes in our family, and we knew we could commit to this session.  So we did.  It will be 8 weeks, 3 days a week, for 1 hour a day.  We set some good goals for our time in the cage, and we are very excited to have this opportunity again!

We got our assessment scheduled at the Center for Disabilities and Development for April 27th.  This will be a 4 hour ordeal, with a medical professional, speech pathologist, physical therapist, occupational therapist, social worker, and audiologist.  It is called a “Neurodevelopmental Clinic”.

Neurodevelopmental.  My thoughts keep moving back to the MRI.  I am finally ready for whatever information it may hold for us, and it is very difficult to wait until May.  I had a frank conversation with a friend about it the other night, and Kiran’s feeding therapist asked if we had scheduled it today.  When I questioned why she had asked – if she had any concerns – she quickly assured me she didn’t…but then said it would just be interesting if there were any abnormalities around the feeding parts of the brain…but then again quickly said she was just curious.

I don’t think it was just curiosity.  I get the sense a lot of his medical and therapy providers are starting to wonder if there is more to his story than we know now.  And the more time passes, the more I start to wonder, too.

So.  I’m processing.  I’m processing fears and emotions, possible scenarios….

I think I am far more equipped for whatever it tells us now than I would have been had we done it any sooner.  So even though I sometimes berate myself for not having done a brain MRI as an infant or in the last year….I remember this.  I wasn’t ready then.  I’m ready now.

It’s the waiting until May that may drive me crazy.

Generally speaking, today couldn’t have gone more smoothly. Kiran did really well during his echo, with mama’s songs and daddy’s stories to keep him calm. He was definitely more aware of everything – and a bit more curious and concerned – but he calmed down quickly whenever he got riled up.

Dr. R said everything looks good and stable with his heart. He didn’t see a change in the size of his right ventricle or thickness of the right ventricle wall. No real change with the conduit – still just minor leaking which is to be expected. The plan moving forward will be less invasive monitoring until something changes. He was thinking rather than going back in the cath lab, our next closer look could be an MRI of the heart, which still allows them to measure pressures. All around just really positive news here!

GI Doctor was mostly an update and some questions. She is going to refer us to have a consult with an entire feeding team – GI Doctor, SLP, child psychologist, etc. – to determine where he is with his feeding and if/when a more intensive feeding program would benefit him. She said they are generally done around age 3-4 and when skills are pretty good. We will see what the team says when the time comes – it will likely be at least 3 months out.

Endocrinology was just updating. We didn’t have any concerns, and she wasn’t seeing or hearing anything that would indicate any gland issues. She did draw labs, and it went surprisingly well. It helps to ask for the best – I am certain this is the first time ever they’ve gotten blood from him with ONE poke! He was just a total rockstar. I know I say that every time, but I am just amazed at how cooperative and easygoing he is. Every time. He just amazes me.

Dr. R. is putting a referral in to the Center for Disabilities and Development. We had been followed by a specialized nurse at the hospital, but that ends at age 2. That will be a whole other assessment with regular follow-up appointments, but we are looking at probably a six month wait for them too.

So. Kiran continues to be medically stable, and his biggest concerns continue to just be development and feeding.

I’ll take it.

I had to make four phone calls yesterday, all related to Kiran.  I have been on the phone five times already this morning, six if you count the one phone call not pertaining to Kiran.

Sometimes, phone calls alone could easily make up a pretty solid part-time job.

I hate phone calls.  If I could drive to all of these places and simply talk to someone face-to-face, I would.  Something about talking on the phone has always bothered me.  I have to be in the right mindset to handle it.  There have been many days – especially early on in this journey when this many phone calls was the norm in a given week and not the exception it is now – when I simply couldn’t.  I put phone calls off often.

I’ve grown significantly in this area.  Does that count as a way-my-life-has-changed since having Kiran?  It definitely has.  Phone calls are a necessary part of life for us.

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Kiran has been on a waitlist for a Medicaid Waiver – the Health and Disability Waiver – since his first week of life.  We were told the waitlist exceeded two years.  In December, we were finally able to have the assessment done to determine if he would get a spot that had opened up.  Last week, we found out he was approved for this spot!  This is exciting news!  I am still waiting on a callback to determine the accuracy of all of this, but, in addition to the Medicaid coverage he has already been receiving, this waiver provides a lot of good extras: respite care, special equipment, home and vehicle modifications, etc.  Respite care is a nice benefit right now, and, depending on the trajectory of Kiran’s development, it may be nice to be able to get a medical stroller or wheelchair at some point … he is getting heavy and walking still may be a bit of time away!  Regardless, I am thankful he was given the spot, and we now have access to more benefits for him.  It’s been a long time coming (and boy, respite care would have been EVEN BETTER when he was a newborn!)

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Tomorrow is Kiran’s big appointment day in Iowa City.  We will be leaving at 5 am to arrive in time for an early morning echo.  Then we meet with his cardiologist, gastroenterologist, and endocrinologist.  I woke up with a lot of dread in my heart for tomorrow.  Kiran is definitely a lot more “with it” and a lot more nervous about things medical.  Last week, I had a stomach bug (24 hr. one, thankfully), and I put on a mask and gloves to be able to say goodnight to him….Let’s just say the uncertainty, fear, and tears that happened when he saw his MAMA like that makes me nervous for him tomorrow.  I hope some of the new calming techniques we have learned and utilized from OT will help us get through the day…and some good distracting toys!  I know the endocrinologist wants labs done, so that will likely be the most challenging part of the day.

Specific prayer requests: That we can keep Kiran calm and happy throughout a rough morning of appointments; that they have no trouble getting blood from him and can do it on the first try; that all news received is good news.

An article.  A group text conversation.  Two experiences today have led me to think about my long-touted theory of what it’s like to love.

I wrote about this in my college blog – I did not realize then how spot on I was.  College was a long time ago, and life experience has shown that I was wise beyond my years….

Loving someone amplifies every emotion, both positive and negative.  I think it is why so many find it difficult to love – that kind of vulnerability isn’t easy.  I also think it is why so many relationships fall apart – and no, I have no room to talk here – because people simply aren’t ready for the negative emotions to also come at them with greater force and depth.

I am not simply talking about romantic love here.  It is the yin and the yang of all love.

The strongest, greatest love I have ever experienced in my life is the love I have for my son.  The greatest love – the greatest sense of loss.  The greatest peace – the greatest fear.  The greatest moments of absolute joy – the lowest moments of absolute despair.  The greatest living – the greatest grieving.  It is all inside this life we live; this love we receive and give.

Experiencing the loss of my brother through death has given me a deeper appreciation of life.  Experiencing the difficulties with Kiran has given me a deeper appreciation for the successes we have.

For crying – my latest blog entry was in celebration of a few swallows of water!  Who knew my joy could come from such a small success…but when you deal with the daily challenges of a child who can’t safely and successfully eat….

I have always, always, said it is worth it, to love.  Go back and read the very first entry I ever wrote in this blog.

In order to experience love, joy, peace, life….we must also embrace the flip side of those things.  I am thankful my experiences have given me depth on the positives.  I wouldn’t give it up for anything.  It IS worth it.

I am willing to bet I have written more about Kiran’s feeding issues than his cardiac issues.  I have said a million times (and will a million times more) that the feeding issues are the hardest.  Cardiac is scary, yes, but cardiac isn’t something I am supposed to be able to do, and it isn’t something I have to work on multiple times a day, every day.

Kiran’s oral eating ebbs and flows.  Sometimes he will have a really good meal – or a really good day – (and by good, let’s be clear, a good meal for him is 15-20 bites) and sometimes he just decides to be very close-lipped for meals or days.  We have been in one of those periods recently.  And I had been frustrated.

I ebb and flow too, with how I feel around mealtimes.  I have been able to refocus myself this week with working on the sensory stuff with food with Kiran.  If he isn’t going to eat, we can at least smoosh pudding around (and what better hair gel exists, really!?!) and throw puffs on the floor.  We can watch the thickened water drip from the spoon to the tray.  We can use the grabber to taste a new spice.

It’s been good for both of us, it seems.  We are still working toward our ultimate goal (baby steps, teeny tiny baby steps), and I am not pulling my hair out trying to get him to take bites.  Tuesday at dinner seemed to be a breakthrough.  We started with the pudding that night, and suddenly, he wanted to eat again.  He took several bites of pudding, several bites of his stage 3 baby food (I think it was chicken noodle or something), a few bites of pear, AND did two drinks off a spoon of his thickened water!  I have been offering him his nectar water 2-3x a day since Sunday night, and this was only the second time ever he accepted it – and the first time he did more than one drink.

It encouraged me.  Like I said, I ebb and flow.  I am not always good at letting him explore and make a mess every time we sit down to eat.  But it excited me, and we have been doing a LOT more sensory play during mealtimes this week.  I have slowed my brain down and really enjoyed the time with him (as best I can; I think I have sensory issues too…I don’t always like being messy while helping him!)

Today at lunch, Kiran calmly and willingly – eagerly, even – took six drinks of his nectar water off a spoon.  I have to gently hold his hands to keep him from “helping”, but once he got the first drink, he was readily opening his mouth for more.  The best part?  Absolutely NO coughing, gagging, or difficulty of any kind!  It is so great to be in this place, with solid direction, and something that is working for him!  Due to tiredness, we took a break from oral practice at snack time today, but he did three spoon drinks at dinner as well!

It probably seems like such a small thing to people who have never had a child with feeding difficulties.  9 sips of water in one day – big deal, right? – YES!  For a kid who has been pretty much refusing liquids for over a year now – or struggling with them if we weren’t giving him the tiniest of sips – this is a big deal.

I’m so excited about the progress he is making and where he is headed.  I am under no illusions and know this will be a slow process, but it is progress.  We continue to head in the right direction, and I will continue to work alongside him every step of the way.

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.

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.

Kiran was getting some Nana snuggle time on the couch this evening, and he started to do his “crunches.” Rather than use his arms to pull himself up to a sitting position, Kiran has always tried to simply use his core and sit straight up. This kid has better abs than me, I can tell you that right now.

Anyway, for awhile now, he has been able to come up to sitting from a reclined position … but tonight, he went all the way down to lying on his back (on Nana’s legs) and was able to pull himself up into a sitting position! He did this a handful of times while Nana was holding his feet down with her arms, and then did it about 1 1/2 times without the feet-hold.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

He is so strong, and he continues to amaze me. We celebrate every bit of progress.

Also: A belated Merry Christmas wish, from us to you and yours. ❤️

I want to be writing more than I am.  I miss sharing about this heart life with no filters.  The current season in my life makes me feel as though I need to be cautious and add filters.  So I choose to not write instead.

Kiran is doing well.  We have been attending therapy sessions and have had a break, now, from medical appointments.  In January, we go to Iowa City twice.  We will see all of his specialists, except his orthopedic doctor and genetic doctor. And we have a date set in May for his brain MRI.

Otherwise, we just continue to celebrate all the little bits of progress we see.  He’s learning more about his body and how it can move.  I caught him trying to sit up by putting weight through his arm, rather than simply trying to crunch himself up (seriously, this kid has abs).  He is responding more to simple commands “Look at Mama.”  “Pat your head.”  He is finding his opinions and expressing them forcefully – he is really not liking being strapped into any seat currently.  Such a normal two year old thing!  And he is singing along with me – and the radio – to Christmas tunes.

It has not been an easy holiday season, but there is so much joy to be found everywhere…so I just try to focus on continuing to find it.  Kiran makes it easy.