A Scare, A Month Older, A Success

It has been a long time since I have had anxiety and fear grip my heart as it pertains to Kiran’s health.  A sweet, long, precious time.  Early afternoon on Thursday, after giving him his bath, I noticed a change in his chest.  The right side was protruding out more than normal.  Now, I had to question myself – I feel, post-op, his chest has always looked a bit uneven.  But this seemed new.

I ran through the routine.  Looked, felt, made sure it wasn’t causing him pain, watched for retractions with his breathing….all the oldies but goodies that used to be part of our daily life.  Then we brought Dad into the picture.  He, too, saw what I saw.  He got out the stethoscope while I called our beloved nurse at the pediatrician’s office.

Since Kiran had no other symptoms, she felt it was likely just due to growth.  However, given Kiran’s medical history, she felt like we should let our beloved pediatrician lay eyes on him (Can I just say – this really helps this anxious mama’s heart.  Yes, please, I’d like the pediatrician to have a look.  Thank you very much.)

So, first thing Friday morning, we went to the pediatrician’s office.  Everything looked and sounded good.  She ordered a chest x-ray to make sure we weren’t missing anything.  Everything looked good there too.  So, I emailed our cardiologist.

In hindsight, given our (also beloved) cardiologist is so great at getting back to me via email and is never (or at least never acts) frustrated or impatient with my questions, I probably should have just emailed him on Thursday afternoon.  It is silly to not want to “bother” him with it until I follow a protocol I have made up myself.  Because, really, when it comes to heart babies and their chests, he’s the expert.

So, I emailed him on Friday, late afternoon.  When I hadn’t heard by the end of the day Friday, I figured I wouldn’t hear back until Monday.  But, Saturday morning (Did I mention how beloved every member of Kiran’s medical team is!?!), I got a response.  I sent pictures and got another response within a half hour.  Everything looks great, and it is just how Kiran’s chest is growing.  It is common, especially for MAPCAs babies – as the right side of his heart grows, his chest is going to grow to make space for it.  It’s called “asymmetric chest wall growth”.

I will say this, in the spirit of total honesty.  We had to make a decision on Friday about whether Arif would get on a plane and head to Seattle for a planned trip.  Considering we were all pretty confident it was nothing urgent (but at that time still didn’t know what it was), of course I encouraged him to go.  Friday night, when I still didn’t have answers and Arif and my parents were all out of town, I had a bit of a breakdown once Kiran was in bed.  As I said, it has been a long time since I have even had a concern about him.  And not knowing – and being the only one – it’s a lot of pressure sometimes.  Knowing you have to be the watchful one, and you have to make the right decisions for your child.  A lot of pressure.

Anyway, that crisis averted, we celebrate his life of 22 months today!  22 months old.  I still can’t quite wrap my head around all of it.  It has been quite the little life he’s lived, and he has changed mine – and still is all the time – in ways I never anticipated.

He decided to do something really incredible today.  As I said, we started an intensive physical therapy program last week.  It’s really cool to watch, and Kiran seems to enjoy it.  He is doing so well!  Today, I decided to put him on hands and knees and see how he’d do.  HE HELD HIMSELF UP WITH NO SUPPORT.  Three times (and then I stopped because he was getting tired and it was snack time).  I timed it once, and he held himself up for 40 seconds!  This is a kid who has always needed support to stay up in that position.  This is a kid that has always immediately dropped down and tried to roll over onto his back.  This is a kid who HATES hands and knees or anything in the tummy down position.  I still can’t believe it.  My heart is bursting.

He is absolutely accomplishing things in Kiran time, but I am going to celebrate when each and every time comes.  I am so proud of him, and I am even more excited about the progress he is going to make with this therapy.

Every fear that has gripped my heart.  Every tear that has fallen from my eyes.  Every night lying awake in the wee hours, ignoring all logic and consulting Dr. Google.  It’s all worth it.  He’s tough, and he’s getting somewhere.  And I get front row seats.  I’d buy that ticket every time.


The Cage

Today is a big day in the life of Kiran.  It is a day his dad and I have been anticipating for months now.  Today is the day he starts The Cage or Universal Exercise Unit.  This is an intensive physical therapy program.  It will be three days a week, for an hour every day, for the next eight weeks.  He will be working with his regular physical therapist at Childserve.

I would like to say I am cautiously optimistic about the outcomes of this program….but the truth is, I’m super excited.  The last heart kid that did this program with her improved dramatically in strength and mobility, and, even though he was older than Kiran, I am hopeful Kiran will see some similar strides in ability.

Our goals include an overall increase in strength, increase in his sitting stamina, increased willingness to stand (and perhaps desire to pull himself to standing position), and some sort of self-mobility emerging (rolling or crawling most likely; walking would be incredible).  No matter what, it will help him improve.

It is a huge time commitment, and it is a commitment to getting out of the house by 7:30 a.m. three mornings in a row for eight weeks.  But I can’t wait to get started, and I can’t wait for what’s in store for my tough little man.


We made it through Kiran’s second dentist appointment yesterday morning (and first one with teeth)!  He didn’t mind them looking around in his mouth, but he wasn’t a big fan of how they brushed his teeth.  Arif and I try to make teeth-brushing as fun as possible and tend to get a lot of practice with patience when we do it at home.  With all of his oral/feeding aversions, we really strive to make all of his mouth experiences pleasant.  This means we play with toothbrushes a lot during the day and have learned several tricks to get him on board.

But – everything looked good!  No cavities or concerns.  The dentist said she could tell where some of his other teeth will be coming in soon.  Considering how long I worried about him even HAVING teeth, this was all great to hear!