Iowa City Appts

Last week, Kiran had appointments both Wednesday and Friday in Iowa City.  My mom tagged along with us on Wednesday, so we could do some outlet shopping on the way home (Kiran will be SO CUTE this summer, especially with his new haircut now!)

Dermatology: This was just to have eyes on his birthmark and make sure we weren’t missing anything.  And we weren’t!  Everything looked normal, and we don’t need to follow up with her unless something changes.  Hurray for not adding another specialist!

Follow-up with eye surgeon: Right eye is looking fantastic!  He is very pleased, and he feels we no longer need eye drops in the right eye at all.  We decided to take the left eye down to just one dilating drop, instead of two, and see how things look in about a month.  It would be really nice to be completely done with eye drops, but I won’t get ahead of myself.  As always, we do what’s best for the little dude.

Friday, Arif and I took Kiran for his appointments.

Endocrinology: Because Kiran’s optic nerve is small, we want to make sure he is followed by the endocrinologist because oftentimes, pituitary gland issues can arise.  Kiran had labs taken, and they all came back normal this time!  But we do have to add this specialist to our team, in case problems come about in the future.

Lung perfusion scan: Kiran continues to be a rock star – and a hard poke for an IV placement.  He did really well for the scan, and Dr. R is pleased with the results.  His scan is stable and showed little variation from the last scan.  Dr. R said it is still showing a minor difference between the flow to the right lung and left lung.  He said it is likely they will need to balloon a pulmonary artery going to his right lung, which can be done in the cath lab.  We have to do a one year post-op cath anyway, for information-gathering purposes…so this simply means we should plan for an intervention during the cath.

All in all, pretty good news all the way around!  And yesterday, Kiran and I saw Dr. M from Iowa City (but here – yay for outreach clinics!) for his feet.  His feet are still looking good, and we were told to continue doing what we are doing.  Dr. M said for rocker-bottom feet, he likes to keep the brace on until they are 3 or 4, dependent on when they start walking and how all of that develops.  We would love to be done with the brace at bedtime – boy does Kiran fight it now! – but then, none of us really know any different.  The brace has been part of his routine almost his entire life, from about 1 1/2 months old.

I was dreading the busy appointment weeks – and actually, we see the pediatrician for his 18 month check-up tomorrow so the appointments aren’t over! – but all in all, we received wonderful news.  And we know he’s doing well when we realize this is the first time we have made it from one wellness check to the next without a pediatrician visit in between!  THREE WHOLE MONTHS!

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18 Months Old

Kiran is 18 months old tomorrow.  A year and a half.  I can hardly believe it.

It has always been really hard for me to read people’s milestone lists – on facebook mostly – when their kid turns x months old, because it makes me sad how far behind Kiran really is developmentally.  For that reason, I have chosen not to ever list his accomplishments in that way.  But this time – this time, I think I will.  Because even though I am disheartened at times with where he is, I am also incredibly proud how far he has come.  This kid has been through far more than I have in my 33 years of life, and he has only lived 18 months.

So.  He is sitting for longer periods of time, but only when he is motivated to do so.  He is starting to more readily put weight on his feet.  He is tolerating hands and knees a lot more, and we are practicing a rocking motion with him to help encourage him to crawl.  He loves being upside down and lets us know he wants to do it often.

He gives high fives and is starting to understand the concept of waving.  His favorite is still clapping his hands, though, which he does all the time.  He loves to talk, but he isn’t forming any words yet.  But if you’re not paying close enough attention, his volume will go up until you are!  He is also getting more interested in toys (finally!), and his (or perhaps mommy’s) new favorite thing to do is play his little toy drum.  We are definitely noticing continued improvement in his vision as well.

He is still primarily fed through his g-tube, but he is making progress with his oral skills.  He is more willing to bring different things to his mouth, eats stage 3 purees with a spoon (and likes to do it himself, once spoon has food on it and is placed in his hand), and can eat puffs and cheerios now without gagging.  We are working on small sips from a sippy cup and trying to introduce straws.  We still have a long way to go with these skills, but we have seen great progress in the last couple months.  He has also become an expert in passing food or spoons from one hand to the other, especially when he doesn’t want to eat it!  AND – three teeth are coming in, all in a row on the top.  Better late than never.

There are milestones he will never hit – he still will not roll from his back to his stomach, because he hates being on his stomach.  This is common for heart babies who have had open heart surgery.  For this reason, he also may never crawl.  But there are plenty of milestones we have hit and will continue to work toward.

The reality of our situation stretches me.  I was a nanny for nine years.  I was the nanny that was all about pushing children to reach that next milestone and their greatest potential.  The one with all the ideas about how I would raise my own child.  All of that got thrown out the window, and sometimes – Quite frankly, sometimes I feel….like I’m failing because Kiran is so behind on these milestones.  I get frustrated – never with him, but with myself – that maybe I could have done more or should be doing more.  I struggle with this.  I don’t admit it out loud often (maybe ever)…but I constantly struggle with this internally.

But.  But.

Kiran is Kiran.  And he is right where he should be.  He is developing in his own time.  I firmly believe that.  And we know what he’s been through medically, and we also know we may not have all the answers of what the whole medical picture is with him.  So despite my struggle, we will keep doing what we do.  And he will keep adding skills at his pace.  And we will celebrate every single one of them.

Guilt and Grace

Let me tell you a story, about a woman who swore her child(ren) would NEVER sleep in bed with her. A story about how having a child of your own changes your perspective, especially since that child is a special boy with a special heart (in more ways than one). 

Kiran still rarely comes into bed with us. But it’s not never. Arif especially likes bringing him into bed with us when he has a 4 or 5 am wake up and doesn’t want to fall back asleep. Turns out, I have to give his dad room to be dad, too. 

And I have been known to give in as well, for no good reason, though I tend to try a few more times to get him to fall back asleep in his own room. 

And then there are nights like last night. Kiran isn’t just getting one tooth in – two more were spotted poking through yesterday afternoon. And he is now letting me know that it hurts. At 1:45 in the morning. By 3 am, after Tylenol and teething toys and rocking and holding his hand and going into his room a half dozen times….I didn’t want to hear his pained cry again. I didn’t want him to be alone in it. And – let’s face it – I really wanted (I would argue needed) some sleep. 


I figure, moments like these, I have two choices. I can feel guilt, or I can treat myself with grace. I tend to do a little of both. I haven’t wandered off my parenting path in major ways – at least not when not having a good reason. I have written before about why my pacifier views had to change and my sleep training views as far as crying – both for very valid medical reasons. 

But Kiran sleeps well almost always. He knows how to fall asleep on his own, and he is in his own room most nights.  

So last night, at 3 am, he came into bed with me. And he was finally able to rest, knowing his mama was with him in the pain he was feeling. 

I will always struggle with guilt or grace. My comfortable response is always to feel guilty. To get down on myself. But it is always my goal, now, to give myself grace. Because being a mom isn’t always picnics and sunshine. And this journey has been difficult and emotional. 

Besides, Kiran is worth a change in perspective. 

First Fang!

It had become a joke. “He’s probably teething”. We thought it so many times, starting around 4 months old. 

Lately, it had become a worry. His 18 month appt is in three weeks. If he didn’t have a tooth by then, we would have been referred to a pediatric dentist to make sure he HAS teeth. I figured with everything else, he’d probably be one of those rare kids that was born without teeth. I already had a game plan….

And today, just moments ago, I was sure I felt a sharpness where before there was none. And sure enough….A TOOTH!  

Even looking back, he gave little indication he was even teething. I did notice he was really wanting to bite his sleeve this morning, but that’s about it. He’s just super easygoing. 

AND HE HAS A TOOTH!!!