I seem to be inside another period of time in my life when I can never get everything done.  In fact, I should be showering right now, while Kiran is asleep.  I will never apologize for not keeping up on the blog like I “should” – like I want to, both for me and for those who do follow along with Kiran’s journey – because when I do not write frequently, it means two things: 1) I’m busy living the journey alongside Kiran and 2) I am not boiling over with the enormity or difficulty of it, therefore not needing to write frequently.

Kiran celebrated his second heartiversary on Friday.  I cannot believe it has been two years since his open heart surgery.  Whenever I think back, I still have absolutely no idea how I made it through that day – other than, did I really have an alternative?  We celebrated with Nothing Bundt cakes, and Kiran LOVED the frosting, opening his mouth eagerly for bite after bite.  I now know where his birthday cake will be coming from….

My facebook sentiments on Friday:

Kiran Aaron Valji, you are my heart. Two years ago, you taught me lessons about strength and love. I think back to surgery day, and I have no idea how I got through it. You were away from me for about 15 hours total that day, and every minute was a rollercoaster ride.

You have come so far. The surgery has helped your heart function tremendously, and I am still wrapping my head around not seeing your cardiologist for an entire year.

I am so thankful for your story and our journey together. You are writing your life, and I get to walk beside you.

 

Kiran decided to show us all just how far he’s come at therapy on Friday morning.  His physical therapist brought a walker and tried it with Kiran for the first time.  He did a great job, holding on far better than any of us anticipated and taking steps (with great support and nudging along).  We were all so proud of him!  The following day, on his third attempt practicing with me at home, he took several steps in a row with no prompting and kept his hands on the bars where he was supposed to the entire time!  I was lucky enough to catch it on video, so it will forever be documented in the best possible way.

We celebrate so joyously, with the knowledge we still have a long ways to go.  My new mantra (and hashtag, when I remember to use it) has truly become “It’s a long road ahead but we journey together.”  I should really figure out how to say “It’s always been a long road, but look how far we’ve traveled already!”….without it becoming too long a mantra.  Maybe I should take up poetry writing again.

I am coming face-to-face, as I have many times in the past three years, with who my people are…and along with that, who they aren’t.  It is a difficult lesson, and I struggle with giving people too many chances.  Chances to be involved with Kiran, chances to care, chances to simply show up and be with us at various points on the journey.  I am so, so, SO lucky and thankful for all of the people who do – and I am often surprised.

Family isn’t really blood after all.  It’s why I coined the term Friendamily.  So thank you, to Kiran and my friendamily, for celebrating Friday with us, in person and online, and for sharing in our joy as we watch him progress, literally, one baby step at a time.

It’s a long road ahead, but we journey together.

When you have a child who has sensory aversion things, feeding ability things, body awareness things, and other various things….

You end up celebrating a whole lot of things.  Odd things.  Things I never would have guessed would make me laugh and cry at the same time.

Off and on for over a year, we have tried to expose Kiran to vibrating toys.  They are very scary for a child who is unsure about his body and environment.  They make a funny noise, they feel odd … for over a year, off and on, Kiran would just go into fight or flight mode when he heard the SOUND of a vibrating toy.

We kept trying.  For many reasons but one big one being – if we could get him to interact with vibrating toys and eventually allow vibrating tools inside his mouth, this could potentially hugely progress his oral awareness and eating skills.

Today, his OT and SLP decided to focus on exposing him to vibration again, with this end feeding goal in mind.  And – something changed for him today.  He was actually willing to reach out and touch the toys, put them on his legs, touch them again…guys – HE WAS INTERACTING WITH VIBRATING TOYS!

See?  It’s goofy the things we get excited about!

With his success at therapy in mind, I decided to pull out the vibrating toothbrush I bought ages ago, in order to be able to expose him at home.  The thing he had never once even been willing to touch before today.  And – within five minutes of me just turning it on, putting it in front of him, and letting him be in charge – he had that thing in his MOUTH!  Granted, he wasn’t sure he liked it – but he tried it THREE TIMES before tossing the toothbrush to the side.

This was when I was laughing and crying.

I have no idea what work we have done to get him to this point, where he feels comfortable and confident to explore vibration finally – but this was a huge deal.

 

The cognitive evaluation showed Kiran to have an intellectual disability. He tested at the moderate level but due to his young age, the psychologist put mild intellectual disability as his official diagnosis at this time. His observations and our questionnaire assessment both matched really well, and he said Kiran is currently at about a 6-7 month old level cognitively.

6-7 month old.  This was not only incredibly hard to hear – when asked before we started, I guiltily placed Kiran at about a 1 year old level – but I don’t fully buy into it.  Kiran’s global delays definitely factor into the way these assessments are written.  He understands far more than a 6-7 month old.  But I also understand why the assessments would place him in that age range.

He wants to see him again in two years. He expected to see delays, given the MRI results, but he (and my screaming internal voice) was still asking the question why?  Why is his brain developing this way?  Why isn’t he learning more quickly?

Why, indeed.  All we can do is keep moving forward and hope to learn more.

I am currently in stoic mode around this.  The best part?  He is still Kiran.  I truly feel like I can take any diagnosis in stride, as long as he never receives a terminal one.

He’s not yet three.  He is learning and progressing in every area – slow and steady.  According to the summary report, this intelligence evaluation “indicates Kiran requires a lot more assistance with learning and daily life activities.”  Guys.  I didn’t need to go all the way to Iowa City to know this.

But.  This gives us more information as we approach the changes coming in just a couple short months.  And it gives us the official evaluation document we need once a spot opens up for Kiran on the intellectual disability waiver.  So it was a necessary step – and another piece to the puzzle that is Kiran.

It’s a long road ahead, but we journey together.

 

 

I seem to be in deep denial about Kiran’s appointment tomorrow. I keep pushing it out of my mind – and even now, while lying in bed thinking about the week – I seem to glaze over the fact tomorrow will, in fact, be an Iowa City day.

Kiran is getting a cognitive evaluation done tomorrow at the Center for Disabilities and Development.

I have no idea what to expect.

How do you assess cognitive ability for a developmentally delayed not-yet-3-year-old?

I know enough to know the results will hurt this mama heart deeply.  I know it will bring the all-familiar grief cycle back to the beginning again.

I also know, in my heart of hearts, the results don’t matter. They don’t add or subtract from Kiran’s value in any way. Nor do they change who he is and what he brings, not only to my world but to all who know him.

But man, I dread and push off and deny tomorrow is here. I am not looking forward to it.

I seem to be living on the verge of tears lately.  This week, the wheelchair, feeding, constipation, this life … has been overwhelming me.

I am currently sitting in a running car, Kiran chewing on his keys in the backseat, tears streaming down my face, in the library parking lot.

Why?  Because we need to go to Hy-Vee, and while I was lifting his wheelchair into the back, it occurred to me the random bruises on my arm are, indeed, due to the way I lift his chair.  And then I couldn’t stop crying.

This life is bruising me, and it is leaving me tender.

How do you tell someone who is reaching out to you – who wants to be a friend to you – that you have no idea how to even socialize anymore?  That most times, you feel so alone in this life, your throat physically hurts from the need to scream?  How do you help someone who knows nothing of this world understand what it is like on the daily?  Without sounding … like this?

Without making them feel pity for you or making them uncomfortable…. WITH finding common ground somewhere, somehow, when you can’t think of how anything could possibly be the same?

And yet.  A six year old, daughter of a classmate of mine, peppered me with questions about Kiran today.  It has kept me thinking all day.  Because I am in tears, constantly, thinking about whether or not Kiran will have friends when he goes to preschool.  What will that friendship look like?  How can I help him facilitate this important piece of his life?

Here is what I think the 3 and 4 year olds need to know: He has a special heart and a special brain.  He is different.  He gets around in his special chair (look at the cool light up wheels!), and he has different ways of talking to you.  But you know what?  He likes to clap – like you!  He likes to laugh – like you!  He likes music – do you?  And he likes friends, like you.

And that’s the best I can do for him.

Right now, for me?  I want what I can’t have.  I want someone to tell me this wheelchair transport business gets easier.  It will.  But as it does, other aspects of life will be getting harder.  I want someone to tell me Kiran will eventually not need the chair or an alternate way to communicate.  It’s possible.  But none of us can predict it with any certainty.

I want to feel normal.  I don’t lead a normal life.  But Kiran simply sees that that continues – I have never felt normal, so it’s not as if I’m missing something that once was.

I am just struggling.  Today.  This week.

But we will make it to Hy-Vee.

 

Three weeks was more than long enough to have to fold and unfold Kiran’s wheelchair every time we went somewhere.  The Mini Countryman is a small car.  It is also a leased car that has to go back in early October.  The seat to the wheelchair had to sit in the backseat next to Kiran, while the frame fit in the very back.  With all of that, plus Kiran, plus his diaper bag, car toy basket, etc in the car, we had to be very creative to fit things like, you know, groceries in there too!

For those who don’t know, my dad loves researching and looking at vehicles.  He had been doing so for several months, and we had had many conversations about what I would be looking for when the time came.  A couple weeks ago, after looking at a Honda Element in person – and figuring out the wheelchair does fit in the back, fully together and upright – I decided for sure that was the vehicle I wanted.

Interesting life twist.  During my senior year of college, the car I had bought at 15 was no longer proving reliable.  My parents encouraged me to buy a new car.  I LOVED the Honda Element.  A new one was waaaaay out of my price range.  I went with the next best thing: a Scion xB.  I don’t know what it is, but I love a boxy car.  So now, more years later than I want to admit, I have purchased my dream car.

I mean, maybe not exactly.  It’s black.  It’s not a fun color.  And it’s a 2011, so it’s not anywhere near new.  But it is a car I have always loved – AND it is working really well for Kiran and me.  I no longer have to bend down to put him in his carseat.  The back opens up like the back of a pickup, so it makes it easier to lift the wheelchair in and out.  And – from home to car to anywhere accessible and back to home – I DON’T HAVE TO TAKE APART AND FOLD THE WHEELCHAIR ANYMORE!!!

(An Aside: I just realized I never bragged on my dad for this.  We got the wheelchair on a Wednesday.  Two days later, that Friday, my dad took the day off and built a ramp up to the front door, so we could easily get in and out of the house.  Kiran and I are so, so loved, and we appreciate this more than I can say!)

It was a good decision.  I am definitely still getting used to its size (the Mini is tiny in comparison), and gas costs are going to increase a bit…but ultimately, this should prove to be a good, reliable around-town car for us.  Ultimately, I feel good about it.  It feels good to move forward in ways that make our reality just a little bit easier, and this vehicle certainly does that, on a daily basis.

Appointment days like today are always tiring. But man, it is so worth it when all the news is good news.

We were hoping to say goodbye to one specialist today. Technically, we did, because she is leaving Iowa city. However, Kiran will still need to be followed by endocrinology to assess pituitary gland function. We watch this due to his optic nerve hypoplasia (small optic nerve). So far, all of his labs have come back normal, and we have no concerns. Hoping to hear the same in a few days about the labs he had drawn today.  We thought we might get to be done with this specialist because his brain MRI showed the pituitary gland is structurally normal, but we learned today that isn’t an accurate indicator of proper function.  So, we remain monitored – but we get to go to a year here, too, instead of every six months.

Kiran’s echo went really well, and we now know to always request Roger.  We have had him twice as our echo tech, with someone else in between.  Roger is a calming presence and has abundant patience.  It made a huge difference with how at ease Kiran was, and he was a rockstar throughout.  Roger also takes more time to explain what we are seeing than any other (save one) tech we have ever had.

Cardiology.  Not only did we get our year card, but Dr R feels with what he has seen, Kiran may be years away from surgery.  Like – when Arif said he was hoping for second or third grade, Dr R said he was hoping for even longer than that!  The initial age we were given as a possibility was five, so I will take third grade, hands down!  Of course, this isn’t set in stone by any means – things can and do change – but wow, what great news about the stability of Kiran’s heart function!

Getting labs drawn always breaks my heart, and today was no different.  We requested the j-tip, which is lidocaine administered without a needle. It is basically injected through the skin using a forceful puff of air – best explanation I can give. It’s fairly new at the hospital, but Kiran has had it one time before, when putting an IV in for his MRI.  It seems to work well for him, numbing the skin before having blood taken.  He still cried and sweat a bit – poor turkey – that continues to be the hardest thing.  Kiran is not a big crier, so it tugs hard at the heartstrings when he does.

Kiran’s feet looked really good, and we asked the orthopedic surgeon if he had any concerns about his hips.  Clinically, he felt his hips had good range of motion and flexibility, and he had no concerns.  This dates back to the developmental pediatrician at the CDD telling us three months ago that she had concerns about one of his hips possibly being out of socket or misaligned somehow.  Given both his physical therapists and now his orthopedist have checked him out and do not share this concern, we feel we do not need to follow up with a hip x-ray.  Always good to knock one concern off the list.

All in all, what an exciting day!  We have been so lucky to not have any medical concerns with Kiran for a good length of time now, and it seems that continues to be the trend. So we just keep trucking along, doing what we do.

We are back in Iowa city, at the Center for Disabilities and Development, later this month for Kiran’s cognitive evaluation. In September, we come twice: once for his regular feeding clinic follow-up and once for genetic counseling and testing.

In October, we meet with the neurologist. This will be our first appointment with one, due to the results of his brain MRI. A big reason we were hopeful to be done with one speciality (endocrinology), but no such luck. So, we just add another specialist onto his list of many.

In November, we follow up with genetics. This appointment may change due to the testing schedule. December is genetic eye doctor. And January is another visit to the CDD for the Neurodevelopmental Clinic.

It feels like a lot right now. May they all bring good news – and more knowledge – like today.

WE GOT OUR YEAR CARD!!!!!

I will update more later, but the big news of this morning is we get to go one full year before seeing cardiology again. Kiran’s pressures and heart function all looked great, with little change from January.

Huge. I cannot believe how far we have come.  So thankful his surgery was so successful, and his heart function has been near-normal for almost two years now!

Wow.  It has been a week for summer.  This mama has been flexible with schedule and revamped things around a lot these last several days, so Kiran and I could have some really great experiences.  My latest mantra: “This is our life.”  Best I can explain – The motto helps me let go.  Kiran has to have solid structure in his days, especially around his feeding schedule, because he is tube fed.  But.  I can get creative, we can feed on the go (and we do this, lots)…and sometimes, as long as he does okay, I can go a little longer in between or push meals a little closer together, so we can live. our. life.

We have been doing a lot of breakfasts on the deck.  The mornings have been so nice and cool and lovely these past few days.  We tried out a splash park for the first time.  Kiran and I got in our friends’ pool for his first swimming experience of the summer last night.  It was five minutes (it was cold) but we swam!  We have had family dinners and the Help-A-Heart picnic.  He experienced Taste of Hope, his first time sitting in his wheelchair at church (and he paid more attention to what was happening in the service), and fireworks!  He really saw the fireworks this year, and the noise didn’t bother him.

Mostly, it has just been an exhausting, on-the-go, fun, exciting week.  We have done so much and really enjoyed summer.  I think I realized how quickly it was passing us by, and there are so many things I want to experience with him…so I just started making it happen, rather than waiting for the perfect time/day.  With him, it will always take a little more work, a little revamping, some creativity, a lot of energy.  But man, it’s so worth it.

I am dreading Wednesday.  Kiran’s big appointment day in Iowa City.  We will see endocrinology, have an echo, see cardiology, and see his orthopedic surgeon.  I don’t just dread the hospital day – they are always long and exhausting – but I am anxious for the cardiology appointment.  He is giving no indications that anything has changed, but when you go six months between appointments, it gets a little nerve-racking.

Look for an update Wednesday evening, where I will also outline his many upcoming appointments.  We will be Iowa City bound 8 times in the next 6 months.

So.  Today, we keep enjoying summer.  Two more July days!