Robin's Week at Children's Hospital

It's been a big week for Robin.  We randomly ended up having two of his specialist follow-up appointments the same week and then ear tube surgery was scheduled too.  I'm glad Children's is such a nice place, only a short drive away, and has a well-stocked Starbucks on site.

Monday

We visited endocrinology.  It was a hard visit.  We learned that Robin's length had fallen further off the growth chart.  While he did grow, it was not very much and the gap compared to where he should be grew larger.  I was surprised to learn he hadn't really gained weight either.  While it's a small dip in the curve, the endocrinologist found it mildly concerning.  If Robin suffered from a regular growth hormone problem, you would only expect his length to continue to fall off the chart.  Depending on how things go, we may be referred to a nutritionist.  Perhaps his body is not absorbing something?  Given the lack of growth, combined with his low energy and need for more sleep (compared to those his age), the endocrinologist decided to take the next step and do further testing.  In a few weeks Robin will undergo a hormone stimulation test.  This involves giving Robin an IV and drawing blood in regular intervals over the course of several hours.  Sounds fun.  I've started trying to get Robin interested in screen time with no luck.  I've also introduced Pediasure into his diet.  He's a fan.
 
Tuesday and Wednesday

Consisted of kicking butt and taking names.  I crossed a ton of stuff off my to-do list and cleaned house.

Thursday

We woke up super early for Robin's 6:15 am surgery check-in time.  Eileen was confused about why we were waking her up in the middle of the night.  Robin did fine until it came time to put on a gown.  He then was alright until I had to pass him off to the anesthesiologist.  They don't let you go into the ER while putting kids under like they do at the Polyclinic. It was so hard.  I knew that everything was going to be fine, and putting in tubes only takes 10 minutes, but I still found myself choking back tears. Luckily, I had Eileen to distract me.  She was a rockstar through the whole thing.

We brought several of his favorite board books to distract him.

Did I mention he is cutting 4 teeth right now? So much drool and so very chewy.

After surgery, the ENT doctor told us that Robin had a massive double ear infection.  That goes to show what a trooper Robin is.  He never complained, although I'm thinking it's probably what caused him to have a fever last week.  His ear canals were very inflamed.  The doctor said that stuff burst open with the first cut.  Ewww.  Poor little guy.  The doctor also noted that Robin had a very small left ear canal.

Robin had a really hard time waking up in recovery.  He was beside himself.  I think he really disliked the taste in his mouth left by the anesthesia.  Luckily, nursing helped, but at this point there is not a whole lot of milk so then we were back to inconsolable crying. After a while he saw Eileen sipping juice and eating goldfish (thanks awesome nurse) and he decided he would join her.  Robin then slowly returned to his happy self.  Eileen was so awesome the whole time.  She really tried hard to comfort and reassure Robin before and after his surgery.

Since getting in ear tubes, Robin has been babbling up a storm (he previously didn't babble much).  He is so happy and responsive.  He seems much more alert and laughs when he hears sounds that he was unable to before.  I know that tubes are going to make a huge difference in his life.

Today (Friday)

While Eileen went to the childcare at Children's, Robin had a check-up in the neurodevelopmental clinic.  Our doctor noticed a new audiology test hadn't been ordered so she put one in.  Now that he has ears tubes, we want to see if he still has hearing loss. I've always thought Robin had weaker hearing in his left ear so I will be interested to see what the results are now that I know his left ear has a small canal.

His language, social/emotional, fine motor, and adaptive skills are doing really, coming in around 16/17 months (he'll be 18 months next week).  However, his gross motor is still lagging behind.  He scores at the level of an 11 month old.  The doctor put in a referral for additional physical therapy.  One of our homework goals is to work on his functional play.  Functional play is stuff like if he has a hairbrush, he tries to brush hair. 

I really appreciated the doctor's thoroughness and validation of my concerns when I wondered about possible chromosonal growth disorders.  Robin has low tone. Since Robin is already getting blood drawn in the near future for the growth hormone test, she went ahead and ordered some additional tests to rule out some conditions to save him a few extra pokes.  She plans to talk with the endocrinologist about testing for some specific growth disorders.  Throughout the hour long appointment, Robin was content taking apart my wallet and allowed himself to be examined as necessary.

All these appointments have wreaked havoc on his nap schedule.  He passed out on the drive home.

Robin has made huge gains in the last three months.  It's very encouraging to see progress.  I'm determined to do right by him.  I would love to know if there is an underlying cause for his issues, but in the meantime I just want to get him all the help he needs so he can live his life to the fullest.  There has been a lot to process this week.  I'm so grateful that Eileen has been patient during all of these trips to Children's.  I know I've been asking a lot of her.  While we still don't have answers, we do have progress and an awesome care team.  We also have a happy baby and that is good enough for now.