Props to the fellow heart mom last night who gave me the expectation to only expect grey from a neurologist. I mean, I knew they didn’t “have a crystal ball”, but I was hoping for … more.

It is hard to not feel like this morning was a waste of time.

This particular neurologist seemed a bit all over the place, so this post will be too.

We did look at brain mri images again, but we really didn’t learn anything new. Everything is small. We all agree it formed that way and wasn’t the result of a stroke or other incident that caused shrinkage (atrophy).  He has partial agenesis of the corpus callosum – it didn’t fully develop. He has cerebral and cerebellar  hypoplasia – both areas of the brain are small. We knew all of this months ago.

Implications are so widespread.

The good: He will walk. It may be forever with the aid of a walker (or gait trainer) but she seemed very sure of this after seeing his supported steps. She even mentioned she could see him riding a special bike someday (but not a bike without training wheels – I told you, all over the place). She feels our best guess for what lies ahead is looking back at how far he’s come. He has been progressing and developing slowly and steadily – with occasional exciting spurts – since heart surgery. She feels he will continue to progress.

Also good: One and done. At this time, we do not need to add a neurologist to our team.

And more good: Apparently, a lot of children with brain malformations do not sleep well and are “morose” … but Kiran sleeps beautifully and is a happy kid.

She also believes he will make friends.  The places this doc went with things….

The not-so-good: He will not ever be “normal”.  This isn’t news.  Quite frankly, I have known this in my soul for a long time.  I wouldn’t want him to be anyone but Kiran at this point.  Again, with the strange places this doc went – He will probably never go off to college. ….

Ok…?  I can live with that.

The hard part was she was very noncommittal about whether or not he would ever use words to communicate.  She said something to the effect of “Of course we hope he will eventually use some words but if not, as he gets older, there are all kinds of apps that can be used to communicate”.

This is hard.  This has been a huge thing on our minds lately – and a struggle I cried over just yesterday.  But.  We live in the right time.  There are apps.

But.  Hey.  I teared up every single time she said he will walk.  And she said it at least three times.

 

I was struggling this weekend.  Kiran seemed to be doing so much better on Friday, but then he had a restless night at his dad’s and didn’t sleep well, and he just still seemed “off” to both of us.  He had a bowel movement that made me feel like his tummy was maybe bothering him – about midday Saturday – so I did what I always do:

I took everything I know about Kiran and all the clues I had in front of me, and I made the best guess I could as to how he might be feeling and what I should do about it.

It wears on me.  To be always guessing, hoping that I hit the mark or close to it.  I wish he could tell me how he’s feeling.  I wish I didn’t have to play detective.

I just forced myself – just now – to finish the registration paperwork for preschool and fill out all the take-home papers that have been sent out so far this year…to the best of my ability.  I left a lot of things blank.  Not on the registration paperwork – I can give medical history and fill out contact information – but the take-home preschool sheets.

I don’t know what Kiran’s favorite color is.  I don’t know what he wants to be when he grows up.  I don’t know his favorite kind of music or his favorite clothes.  And more importantly, I don’t want to guess.

Not even that.  I don’t want to force my opinions onto his being.  Yes, I’m probably overreacting.  I don’t care.  I plan on bringing it up at the meeting we have on Wednesday with his teachers.  Kiran gets to keep his blank spaces, until he decides and communicates his own preferences.

I am struggling so much with this today – It is actually not as often as you might think that I cry while I blog – but it is so hard that Kiran’s ability to communicate is so basic.

Don’t get me wrong – I am beyond thankful he communicates as much as he does.  His body language, his facial expressions, his vocalizations – he is VERY good at communicating emotions!  I know when he’s frustrated or overstimulated or happy or angry or excited or hurting.  I don’t always know why.  I can’t always differentiate between hurting or scared – or overstimulated or excited – but he’s pretty good at giving me a ballpark emotion.  I know not all non-verbal kids express themselves as well as – or as frequently as – Kiran does!

But I wish he could tell me that his tummy hurts or he’s just tired – that he’s hungry or doesn’t feel like eating much – that his favorite color is green today but it was purple yesterday – that he wants to be an astronaut or a rockstar when he grows up –

I’m gonna fight to keep those blank spaces, so they are there when and if he wants to fill them in.

I’m not normal.

Kiran rarely sleeps in.  He is, in general, the best alarm clock I have ever owned.  If anyone wants to wake up to a cute little man making noise or banging his foot brace on the side of his bed promptly at 6 am, I have a kid you can borrow.

That’s not the abnormal part.  The abnormal part comes into play on mornings, like this one, when he does sleep in.  That’s when I recognize how my brain works differently than most people’s.

I am making an assumption, but I would assume most people, upon waking up later than their child’s normal wake-up time, realizing they are sleeping in, don’t immediately worry about walking in to a dead child.

This is not a fear based on a current reality.  Kiran is stable and doing so well medically; there are no immediate, abrupt concerns that would cause such a worry to pop into my brain.  There was a time this concern would have been more valid – any morning the first ten and a half months of his life, for instance, though we had the pulse ox monitoring any changes at that time – but not now.

More than two years post-op, and I still can’t shake that thought when he sleeps in.  If that is not post-traumatic stress, I don’t know what is.

But I realized this morning, it’s not just related to him.  The day my brother was in a car accident, I spent the entire ride to the hospital (an hour away) convincing myself and everyone in the car that he was going to be okay.  Only, we got there, and he wasn’t.  He wasn’t okay at all; he “didn’t make it”.

Despite attempts to the contrary, we take moments like that, and we build protections around ourselves.  If my brain can at least be somewhat prepared to walk into a room and find my son in a “didn’t make it” scenario …

I am not normal.  I am a pessimist, by most people’s labeling techniques.  I am a realist, by my life experience.  I am just someone who wants to be aware of the worst case scenario, because it takes some of the power away when it actually happens.  At least I assume it does.

I don’t want to be caught off guard again.

Post-traumatic stress.  People don’t always think about it as affecting people like me.  But the sudden, unexpected loss of a loved one and living with a medically complex/special needs child – believe me, it’s a part of my world.

Sick days are rest days for me.  Well, rest days for my body, anyway.  Snuggle time, cartoons, longer and more frequent nap times (for him), cancelled appointments, staying in pajamas all day (along with him – solidarity!)

My brain certainly doesn’t get a rest day, though.  Decisions are tough for me anyway, because my brain constantly over-analyzes everything.  I don’t just second-guess myself … heck, I get up to tenth-guessing myself sometimes.

So in the midst of the snuggles and the temperature taking and the slow tube meals and the phone calls to cancel today’s appts and the emails wondering about whether or not to cancel tomorrow’s appts … my brain is most definitely not taking the day off.

Kiran’s managing this illness just fine – no serious concerns – and I am thankful for that.  I can handle low-grade fevers and lack of energy and coughs/stuffy noses and lots and lots of snuggles.  I will never take it for granted, because I will always remember that week in the hospital when he was just under three months old, and there due to a COLD.

So even though my brain doesn’t get the day off, I am thankful that we are home.

You know how moms just…know things!?  I don’t even mean me – not at all – I mean…MY mom knows things.  I have never understood how she knows things, but if I don’t know something (unless it’s about cars or tools or mechanical-type stuff – my dad knows those things), I go to my mom.

I have always felt SO insecure about being a mom because I. Don’t. Know. Things.  I don’t know how to get to the point where you DO know things.  I don’t have the confidence.

Well, today, I realized I do know things.  I know Kiran.  I know him well.  He woke up not feeling well.  He didn’t have a fever, but he was just a bit stuffy, was coughing a little (at a non-feeding time), was struggling more with his oral eating, and was just TIRED.  I assumed he got my cold.  We opted to cancel our preschool meeting with his teacher and associates, because it’s not a good first impression to get everyone sick.

I questioned it a few times today.  But then he continued being not quite right.  We had to alter some things – he was struggling a lot more with his water, so I went back to half nectar thick, and he did a lot better with it – I assume mucus is the culprit.  And we did a two nap day instead of a one nap day – and slowed down on dinner and went to bed early.

Basically, we had a sick day, even though I was questioning if I had made the right call, not really certain that he was sick.

And then I checked on him before my bedtime.  And he was awake, so I got in to snuggle him.  And I thought – He feels warm; I think he has a fever.

Guys.  I know things.

Sure enough, fever of 100.8.  Tylenol and snuggles given, alarms set to check on him a couple times before morning….

There is so much stuff I know that my mom doesn’t – or doesn’t know in as much depth as I do – Kiran has made sure of that.  He has a lot of extra stuff to know.  But I still have to say – it makes me feel good that I know some of this “regular” mom stuff too.

I just have to learn to trust it.

 

Three weeks from today, Kiran has his first day of preschool.

Told you I’d be coming right back to this.

I’m not ready.

I did a preliminary fill-in of his GIANT registration packet today.  As soon as I put the pile off to the side, I am telling you, I was on the verge of a panic attack.  I have had only one in my life, but this felt like it came close to a second one.

How the heck am I going to get through day one?

I keep holding back tears and trying to distract myself.  I KNOW it’s the absolute right, best, most amazing decision we could make for Kiran.  I know he will thrive in the social environment, and he will grow in ways he wouldn’t if he didn’t start now.

I should have had more babysitters.  I should have trained everyone I met on the street how to feed Kiran and care for him.  I should have practiced this more.

Are there room mothers in preschool?  Daily volunteers, perhaps?

I’m not ready.  I don’t foresee being ready in three weeks, either.

I feel like this weekend provided a brief breath – a very brief break from what has been consuming our lives and will be the rest of this month – the preschool transition.

It was a bit of a wonky weekend, which ended up working out really well for my current situation.  Kiran went to his dad’s Saturday morning through Sunday afternoon.

Saturday, my brain got a break because my body was working a catering event, preparations all day and working all evening.

Sunday, the break continued with a relaxing morning, and a work-related lunch, preparing for another catering event this month.

Sunday afternoon, Kiran got to come with me to a birthday party, and he got to ride a unicorn!  Yep.  A nice miniature pony ride, complete with fairy-tale features.  The second ride, he was like a pro.  This was a really great experience for him to have for many reasons, but especially since I have been considering therapeutic horseback riding for him in the near future.  I think it would be a really neat thing for him to experience, and this gives me the confidence to check into it for real.

Sunday night, I got to be with family.  We ate delicious leftovers (a perk of catering with a talented chef) and just spent time together.  It was the perfect ending to a busy but important weekend – other than I could tell I was starting to lose the battle I was waging against this cold.

Which brings me to today.  Kiran and I had a couple errands we HAD to run this morning, and then, due to how crappy I am feeling, we laid on the floor and read books until lunchtime.  He’s been napping since noon, and I am about to wake him up to go spend the rest of the afternoon/evening with his dad.

Things don’t often work out this way, but our Sunday-Monday trade this week means this sick, achy mama gets to spend the rest of the day in bed.

Good thing – cause tomorrow, brief breath is over.  October is BUSY!

 

Traveling back now from yet another Iowa City appointment. I am starting to think I should look for houses there rather than in WDM.

Today, we had a genetic counseling appointment to discuss the whole exome sequencing test – and to sign consent forms, of course.

If Kiran has a genetic disorder that can be identified, this test will give us that information. It is the “most comprehensive genetic test currently available.”

70% of results come back negative, meaning normal.

Genetics has come so far, but there is still so little known. Still, I am glad we are seeking answers at this level.

15% of results come back as VUS’s or “variants of unknown significance”. This means they found some differences in his genes, but they don’t know what the differences mean, if anything. This was what we found with his chromosomal microarray as a newborn. A variant without any known information attached to it.

Only 15% of the results come back with a positive result, or a variant they find that has known significance. Basically – an answer – an underlying genetic cause for all of Kiran’s stuff. A positive result may change his medical care or it may not, but it will give us an answer and resources.

We have to wait 3-4 months for these results. I am cautiously hopeful that Kiran’s results will fall in that last 15%.

But – genetics continues to make exciting progress and there are already the beginnings of even more intricate tests out there – so even if this doesn’t reveal anything, there is always hope.

I wonder if there will ever come a time in my life when I am not so preoccupied with poop.  Kiran’s poop, to be exact.  It seems we figure out a rhythm and a routine, and he goes daily for a few weeks … and then I have to work way too hard to help him go, every other or every third day.

This stinky rollercoaster is killing me.

For the most part, Kiran’s dad and I are in agreement that we would rather use more natural means, as opposed to medication, for such things.  For instance, he was on reflux meds a couple years ago … once we switched him to a blended diet, we attempted weaning him off.  The reflux didn’t get any better, but it also didn’t get any worse.  We now regularly use aloe juice to help with his reflux.  We monitor and if it comes to a point where medication is necessary, we will absolutely try that again.  But for now, if the reflux is going to be the same whether he’s on medicine or not, we’d rather go with not.

In fact, Kiran has been medication free for over a year now, which is crazy.

Anyway.  There are poop options we have never used.  We have never used a laxative or suppository; we have never used an enema.  We have always been able to use other methods – juice, karo syrup, probiotics, time in stander, bicycle legs, positive tummy pressure/rubs – and have been successful.

But boy – sometimes when our entire day revolves around getting the poop out – I question our pure ways.

And let me tell you – when the poop does come, it’s always a celebration.