It is interesting how the same process taken to do something looks – feels – so different when the circumstances change.  Performing a routine g-tube placement and performing an “oh crap, I just accidentally yanked his tube out”  g-tube placement are incredibly different experiences.

For those who have followed our story all along (and seriously, if you haven’t started at the beginning and read all the way through, I think you ought to – our story is a good read), you know this is the second time the tube has been yanked out unexpectedly.  The first time it happened, it was literally the night after we had learned how to perform the placement that morning – so three months after it was surgically placed.  Annnnnd it happened with a sitter.  Needless to say, we ended up in the emergency room with the need to dilate – Worst. Thing. Ever.  It still ranks up there as one of the hardest experiences I’ve watched him go through.

Now, almost two years in, with several successful routine placements under my belt, I at least could approach the situation with far more confidence than I did the first time (when I basically stood back and let his dad attempt, called the home health nurse, went to ER).  So – here’s what happened, in a nutshell (And yes, it was 100% my fault).

Kiran was super sleepy in the car coming home from therapy this afternoon.  Since I gave him his water before we left Childserve, all I needed to do was his g-tube meal when we got home.  I opted to take it all outside on the deck (SUCH a great day!) and just feed him on my lap.  I forgot to take water outside with me, so when I finished with his snack, my intention was to go in and flush his extension and tube with water before putting him down for a nap.

However, once I got inside, my brain went into autopilot, and my focus shifted completely to putting him down for a nap.  I completely forgot his extension was in, completely forgot I hadn’t flushed it out yet, completely forgot that I have been a tubie mom for practically 2 1/2 years and I should not be a newbie at any of this….

So I went to put him in his crib with the extension still attached (This is exactly how it happened the first time, too, only the sitter knew the extension was still in; I wasn’t even being careful because my brain forgot).  Sure enough, the extension caught between me and the crib, and as I laid him down, I heard that dreaded POP!

I knew immediately.  I looked down and one of the things I have feared the most (silly, but true) was reality: There was the extension, his tubie pad, and the Mickey button with the balloon still full of water.  Ouch.

Kiran didn’t even fuss.  He kinda made a noise and rolled to his side when it happened.  Then, as I ran upstairs to grab my emergency tube kit (it lives in the diaper bag so it’s always with us), he started “talking” to me about it, but not in an upset way.  I took the water out of the balloon, lubed the tube up, and made my attempt.  It didn’t go in.

Fun fact I learned today: When the button pops out with the water still in the balloon (It takes some good force; it’s quite a bit bigger than the hole it comes out of), the stoma (the hole) immediately starts swelling.  I’m still kinda amazed Kiran didn’t fuss, because it hurts me thinking about it popping out like it did.  So.  It takes more force to push it back in (It is also why you have to get it done quickly or you end up dilating in the ER).

I learned something about how far I’ve come today.  I stopped, I took a deep breath, I gave myself a quick pep talk, and I tried again, applying more pressure even though I was completely panicked about the whole thing.

And it went back in.  And it didn’t hurt him – at least he gave no indication that it did.  And then I just hugged him.  Put him down for a nap without any additional drama.  And shook for the next hour.

That may be an exaggeration, but it is definitely not a fun experience.  I do feel it is one that will be repeated, only with Kiran as the culprit – He has been pulling and yanking at his tube so much lately, I’m surprised it was my fault the first (second – I don’t always count the first since it was with the sitter and I missed out on the oh crap moment) time this happened!

Still, another experience under my belt.  Now I fear it far less.

 

Iowa City day today. Kiran met with a dietician, gastroenterologist, speech-language pathologist, and psychologist to get some fresh sets of eyes on where he’s at with his feeding.

We basically left with affirmation that we are doing all of the right things, and there isn’t anything different – or more intensive – we should be doing right now. His oral-motor skills need to strengthen and progress before we could really move forward with anything behaviorally. Also, weaning calories off the tube at this point wouldn’t do any good because he isn’t taking enough volume orally to start making a connection between hunger and oral satiation of that hunger. The kid just needs more practice with eating effectively.

The psychologist gave us some good instruction that we can start shaping behavior – with facial expressions and our voice – with things like his piranha biting on the spoon or wanting to do everything himself. Though I do this type of shaping in other areas (or try – hair pulling continues to be a huge issue), I hadn’t thought to extend it to mealtime behaviors. I think my focus had always been on making mealtime fun and directed by him – but she’s absolutely right – he’s 2 1/2 in 2 days, and it’s time to start shaping behavior in all areas.

Of course, they want to now become a part of his care, so we will meet with the feeding team again in six months to see how he’s doing and potentially re-evaluate.

In other news – just received an email almost 2 1/2 years in the making – Kiran has been approved for respite care! We have been allotted 50 hours a month, and his longtime babysitter and friend, already a respite care provider, will be providing the care. So excited they will get to have regular time together again, as their relationship is truly special.

Tomorrow will be Kiran’s last day in the cage for his intensive physical therapy program.  Testing was done today to make sure we would have enough time to get it done, and he did great!

Last time we started the session, he started at 87 assist points and by the end of the 10-week session, he was down to 70 assist points (It’s like golf – lower score is better).  He retained a lot of his progress over the course of the four months in between sessions and started out this session at 76 assist points.  This was an 8-week session, and he tested today at 60 assist points!  This is amazing progress, as his PT stated a good cage session is usually an average gain of 14 points, and he has had two sessions with even better results!!!

From watching the testing and hearing his therapist’s feedback, I would say his greatest gains were in quadruped (hands and knees) and sit-to-stand.  She was even able to test marching this time – it wasn’t even possible for her to attempt with max support last session.  He has really grown a lot stronger, and it was so cool today to see just how much progress he has made over the last two months!

The wheelchair assessment on Wednesday morning really wasn’t as overwhelming – as far as decision-making and information gathering goes – as I thought it would be.  Due to the knowledge of Kiran’s two great physical therapists and our willingness to trust their professional opinions, most of the option decisions were made for us.  The hardest part was picking out the colors!

Ever since the wheelchair discussion started, I have been paying more attention to how easy (and how difficult) places are from an accessibility standpoint.  I have turned over things in my mind like a handicapped placard for our vehicles.

But coming out of that meeting, with a tangible picture in my head of his wheelchair, I have more questions.  Anyone with any wheelchair experience, feel free to help me out.

Upon leaving the meeting, I had to use the restroom, and a thought occurred to me that never has before: What are the proper societal expectations for a person in a wheelchair in a restroom line?  For instance, if I’m at the zoo and there is a long line for the bathroom – and someone comes out of the handicapped stall, do I cut the line since we need to use that stall?  Or am I to wait in line for our turn?

Seriously – anybody with zero wheelchair experience – has this thought ever even occurred to you?  I mean, I have no problem going Mama Bear (respectfully and politely, of course) for what my son needs, but I certainly don’t want to cut the line if that isn’t the proper, socially acceptable thing to do.

Also, I am someone who likes to do everything I can online, especially if my other option is having to call and – heaven forbid – talk to someone on the phone.  So, for events like concerts or shows or sports games, I like to buy my tickets online.  Is there generally a way to do that if you need a wheelchair-accessible seat option?  This is forward-thinking – so far, I haven’t taken to Kiran to these types of events – but it is something I will want to do in the near future.  Will I have to call every time?

I am sure I will have a million more questions as we get closer – and even more once we get and start using the wheelchair.

I just feel like we are at a crossroads again.  I felt this way pre-surgery too.  Six months from now, life is just going to look very different again.  And I have no idea what that different will really look like; I have very little idea what to expect.  Wheelchair.  Preschool.  Life.

But hey – we did request light-up wheels for the wheelchair – so at least I know he will be riding in style.

I learned awhile ago how good it feels to be recognized.  To frequent someplace enough – and matter enough to those who are there – to be paid attention to.  Granted, I know that it is not me they pay attention to – it’s my cute little sidekick with the contagious smile.

Some friends of mine and I (and Kiran, of course) have made a somewhat regular lunch date at an easy and close location to my home.  It varies how often we go here, but in Nov/Dec, it was once a week (and my waistline at the time showed it!)

Anyway – today, we had lunch.  And both women working recognized us; our server was someone we have had frequently in the past.  We were earlier than normal, so we were the only ones in the restaurant.  For the first time ever, the server asked some questions about Kiran.  It started at one point asking about his new glasses.  Then, while waiting for our food to get prepared, she began asking if he could eat anything orally.  This was followed by a lot of other questions, and she got an incomplete but highlighted health history.  She made the statement that even though she only sees him when he’s in for lunch, she has definitely noticed improvement with him!

That was such a cool thing to hear!  And for someone to pay attention closely enough to be able to see a change and growth and increased strength…it touched my heart that she took the time to ask questions and talk to me about Kiran.  He continues to be my most favorite topic in all the world!

I also saw huge improvement in how well he sits up in the restaurant high chairs (which don’t give very good support).  I could definitely see how this cage session has increased his core strength by how long and how well he supported himself.

It was just some good in an otherwise emotionally taxing day.

I have been meaning to write this post since Friday, and since there will be more things to process coming up soon, I wanted to take the time to update today!

Kiran received his glasses on Friday afternoon.  The transition is going better than I anticipated – we started with a 45 minute wear and then later in the evening, an hour with them on.  Saturday, he had 3 wears of at least an hour each, and Sunday he had about 3 wears, one being closer to 2 hours!  He wore them during speech and OT yesterday afternoon and did a pretty good job with them during his intensive PT session this morning.  His dad even trusted him to wear them in the car on the way to PT this morning (something I haven’t done yet, due to not wanting him to chew on them!), and I guess he kept them on the whole way!

He still dislikes them being put on his face, and there are plenty of times he takes them off and throws them to the floor in one sweeping motion.  But overall, he is getting used to them really well.  I haven’t seen him crossing his eyes near as much (only once in five days), and it does seem he is starting to get that he sees better with them on.  It’s an exciting transition for sure!

And he’s just so darn handsome in them.  I can’t believe how much more grown up they make him look!

Kiran saw the genetic ophthalmologist today.  It was an interesting appointment.

Doctors often talk quickly or brush through certain statements or topics – One of the things I have gotten very good at is asking clarification questions – really just asking ANY and ALL questions, unveiling my stupidity be damned.

Dr. D. today brushed past this statement in a long monologue: Kiran has a pretty large deletion.  This is talking about the genetic deletion we have known about since his initial chromosomal microarray at birth.  Since no one had ever expressed anything to us about the size of his deletion, I backed her up and asked for more information.

She explained the size of the deletion really doesn’t matter.  There are (and bear with me here; genetics is not my strong suit) certain spots in our sequencing where there could be a small deletion but because there are many genes in that area, a lot of them are affected.  In Kiran’s case, there is only one gene known affected by his (apparently large) deletion.

And again, we heard this: Kiran’s specific deletion is the first one ever reported.  I asked for further clarification: In the United States? In the world?  The answer: Period.  As far as she knows (and it’s a question we will bring up with our geneticist in June), there has never been another report of this specific deletion.

Again – of course – our unique boy.

She does suspect the deletion does explain some of his diagnoses, but of course, we don’t have any definitive answers on this yet.  We may never.  But that was simply the interesting genetic part of the appointment.

Good news: His pupils continue to dilate FAR better post-op (one year post-op for his eye surgery yesterday!).  His vision is continuing to improve.  Other than watching the small cataract in his right eye (which so far isn’t causing any visual problems), she doesn’t foresee any necessary future surgeries at this time.

We had noted he has an astigmatism at his past eye appointments.  Today, she said he is nearsighted.  She measured his prescription with a magical tool I don’t understand (When I go to the eye doc, it’s that whole “This one or this one” game for 100 years) and determined that all of this information, paired with the intermittent crossing of his eyes, means we should give glasses a go.  Oftentimes, when kids go cross-eyed every so often (and come out of it quickly, as Kiran does), it may be that they are trying to focus their vision.

So.  We ordered glasses for Kiran today.  We will get them in 10-14 days, and we have been instructed to start with one hour a day during a visually stimulating and engaging activity.  This is so he will hopefully keep the glasses on and be able to notice the difference.  It takes about an hour for the brain to register the difference, I guess.  From the one hour a day, we will attempt to increase the time the glasses stay on, as he tolerates.  We already have a follow-up with her scheduled after Kiran’s MRI in May, so we will follow up about how the whole glasses thing is going then, too.

This will definitely be an adventure.  Kiran won’t keep sunglasses on.  I can only hope that if we can power through the first several days and his brain can see and appreciate the difference in vision with the prescription lenses….that maybe this won’t be a constant battle.  Maybe.

But then – he’s one of a kind.  And he definitely has his own mind.

But boy, does he sure look cute in glasses!

I don’t think they are new.  These looks.  They have been poking at the edges of my consciousness for a few months now.  Today, though, I couldn’t ignore them.

Kiran is different.  No one can deny that.  He will be 2 1/2 years old at the end of April.  And he is growing so well, so he physically looks like an almost-2 1/2 year old.  And the people around us, the people orbiting this world-of-difference we live inside, have started to notice.

I took Kiran to library story time this morning.  We sat front and center (it’s the eager student in me).  I helped him stand and participate in the songs and movements that were being done.  He started singing along during some of the songs.

And I noticed the curious looks of the other kids.  Those I have seen before, and they don’t bother me.  Like I have said, kids are way smarter than most adults give them credit for…and I think curiosity of difference is an important stepping stone out of ignorance and into understanding.

But there was one woman…my assumption is she was the grandma of the little boy, likely around Kiran’s age, maybe half a year older…that kept blatantly looking at us.  And it was like I could see the thoughts in her head through the look on her face: She was trying to figure out “what is wrong” with Kiran.  It was like curiosity mixed with something else…disdain?  Maybe not quite.  Fear?  I bet there is some of that, and that makes sense to me (I wasn’t always the mom of a special little boy, after all).  Whatever it was, it rubbed me the wrong way.  I kinda just kept looking back at her and giving her a smile.

From my perspective, I wish it wasn’t so taboo in our society to simply walk up to someone and ask questions.  I welcome ANY chance to talk about Kiran and educate people about CHD and other differences.  It’s the most passionate topic of my entire life.

But I also worry about this next phase of life we are moving quickly into.  Kiran IS different.  And he is now at an age where the differences are far more noticeable than they once were.  Hell, even my sugarist the other day thought he was just over one year old, and why wouldn’t she?  These things hurt my heart, but I understand them.

I know I will learn how to be a different sort of advocate for Kiran, but right now, this whole thing intimidates me.  I just keep reminding myself that hospitals and medical professionals used to intimidate me too, and now I advocate with ease and determination in those settings.

I wish I could blaze an easier path for him to walk down – for us all to walk down beside him – I wish so many things.

But time keeps moving, and things keep changing.  And this fall, this little boy will start preschool.  And I have to help give him the tools – and to give his fellow classmates and their parents the tools – to navigate the path we are on.

We live inside a world of difference.  For a person who has always felt most comfortable being a wallflower…this, too, will grow me.

Yesterday was beautiful!  Kiran and I enjoyed some time at the park in the afternoon.  He did such a good job sitting and going down the slide – he didn’t try to throw himself back once!  We did some more good practice with stand-to-sit at the bottom of the slide every time too – gotta get our physical therapy in!

He really enjoyed sitting and playing with the wind chimes, too.  Music continues to be a big motivator and enjoyment for him, which makes this music-loving mama very happy.

As I was watching all of the other kids running around playing – big and little – a thought occurred to me.  In the day-to-day care of Kiran, I never get a break.  When he is with me, it is hands-on, always.  Most caregivers with kids his age get breaks – the kids play with toys independently or they can take them to the park to run around.  Kiran is still largely learning HOW to play with toys, so he still needs someone to show him and interact with him while doing so.  And he isn’t mobile, so playing at the park is hands on too.

It was just kinda a light bulb moment, one I think most special needs parents get: No WONDER I’m exhausted at the end of the day!