Sunday, April 29, 2012

Ronan is the 1%!

I love carrots!
This young man here is part of the 1%.  Ronan is FINALLY on the growth chart for weight again, topping the charts at the one percentile.  He is three percentile for length.  Paul and I literally had a celebration.  We texted everyone we thought would care, plus some others who probably didn't care and thought we were nuts for sending them a late night message about this.  We posted on Facebook, Twitter, and anywhere else we could.  This is a big deal for a cardiac baby, especially when he had to be on a very special low fat diet for 2 months after his open heart surgery.

I have this love/hate relationship with the growth chart.  It drives me crazy.  I loath whoever came up with it.  It makes us parents with a special child feel like horrible parents.  A lot of times people ask how much Ronan weighs or how big he is, and sometimes the growth chart comes up.  Prior to his heart surgery, Ronan was holding his own with the growth chart.  He was about 20th percentile when he was born, and hovered around the 15th percentile until surgery.  Ronan lost a lot of ground while he was in the CV acute, and then especially when he was on his special diet after his lymphatic system was damaged during his surgery.  This low fat formula is terrible.  The first time Paul and I mixed it up, both of us nearly lost our lunch.  Ronan threw up from it at least once a day.  It was a dark period in the Marsolan household.

I'm going to digress a minute...  in the days after his open heart surgery, I found the news that I would not be able to continue breastfeeding Ronan for two months devastating.  Maybe it was the stress, lack of sleep, or just my emotions, but I was extremely upset to the point where the nurse who informed me of this said, "oh I didn't realize you were that into it."  I went ballistic.  It felt like the one thing that Ronan was doing well with was being taken away, beyond the bonding aspects of it.  

Paul and I could not be more excited about finally reaching the one percentile.  First Ronan starts sitting on his own, then he decides to gain some serious weight. A few people have commented to me recently that Ronan is really starting to look fat.  I don't mind, it is music to my ears.  I have been waiting so long.  I was looking back at some pictures of him when he was just a few weeks and months old, and he really did look skinny.  I think he looks much healthier now. 

Ronan's personality is really starting to come out.  It is so fun to watch.  Our developmental therapist was here yesterday, and was doing something silly.  Ronan gave her a really a funny look, like what on earth are you doing.  He laughs at us, does the "up up" sign, and will only hold your hand if he wants.  He's signed momma a couple of times, which warms my heart.  Much to dad's dismay, there has not been any signing of dadda.  I'm sure the roles will be reversed when he starts talking :)  Here are the many expressions of Ronan...

Here's one last picture of my boys.  Ronan loves his dad so much!

Sunday, April 22, 2012

Ronan's Olympic Feat

These past few weeks, I have been feeling a little down as you might have guessed from my "Overwhelmed" post a couple of days ago.  I try very hard to remain upbeat and positive.  Staying positive helps me to keep up with our frenzied life.  Also, little ones can understand more than you think, and I truly believe they will rise to any occasion presented to them.  I never want Ronan to think he cannot do anything he wants, so I try to keep doctor's prognoses, therapists' opinions, and any other judgement regarding him out of my actions and my mind.  This may become more difficult as he gets older, but I think it is important nonetheless.

Anyway, on Friday I watched this commercial:

One leftover from pregnancy for me is crying during commercials. It used to freak Paul out, but now I think he is resigned to the fact that I may cry for any number of reasons during a commercial for allergy medicine.  This particular commercial struck a chord with me.  However irrational, I wondered if Ronan could ever train to be an Olympian.  Would that even be an option for him.  Could he ever dream about being an Olympic athlete?  Then I got to wondering if he would be able to play sports.  Would a coloboma and a risk of retinal detachment prevent certain sports?  Would his heart condition mean that he would have to sit out?  And then it moved on to whether Ronan would be able to walk unaided.  Balance issues are common for CHARGErs, and it is difficult to know the effects until the child gets to the point of walking.  I pushed our PT on Wednesday about Ronan's future, and she remained tight lipped.  I was looking for a, oh I definitely think Ronan will be able to walk on his own, or even a it may take awhile, but he will get it.  But all I got was a, we need to wait and see.  I managed to whip myself into quite a frenzy thinking about all these variations of the future, so of course I had to call my mom, and I was able to get myself back into a more stable mindset. 

I think, in a way, my little boy had my back.  He knew his momma was upset, and he wanted me to know not to worry about him.  This weekend, Ronan started sitting unassisted!!  Granted it is only for a few seconds, maybe five at the most, but I felt like I was an Olympic mom.  I felt like one of those moms in the commercial, that Ronan had been training forever to be able to do this.  Silly, I know.  But I could not have been more proud.

This is a huge milestone for Ronan.  It shows a lot about his balance, and ability to achieve his gross motor skills.  He started to show that when he feels off balance, that he knew he should put his hand out to steady himself.

I need to take a page from my son's book.  Just when I was getting more upset, he showed me I need to keep positive.  It was as if he was saying, hey mom, I can do this stuff.  Please don't worry. 

Wednesday, April 18, 2012


This little man makes everything worth it
I am overwhelmed.  I am mentally, physically, and emotionally tired.  Over these past few weeks, Paul and I have had some serious periods of feeling overwhelmed.  I think some aspects of reality have set in.  Ronan will have therapy appointments six days a week.  He will have PT two times per week, OT one time per week, speech therapy one time per week, developmental therapy one time per week, and craniosacral therapy one to two times per week.  And these appointments are in addition to our normal appointments and follow ups.  We probably end up with one to two follow ups per week.  I spend, on average, about an hour a day researching doctors, genetics, advances in the various fields that Ronan touches, and following up with things.  Honestly, it is mentally and physically exhausting.  I truly think all of this is helping Ronan, otherwise there would be no way that Paul and I could keep up with this frenzied pace.

Another complicating matter is insurance.  Although we have wonderful insurance, it really does seem like we get at least one medical bill a day.  Literally.  Thankfully, they are all little bits here and there - an $8 bill from the cardiologist, a $12 bill from the ophthalmologist.  Of course we get our fair share of large surprise bills, which we then have to go down the road of calling insurance, calling the doctor, and attempting to coordinate the two.  My "favorite" part of this whole bill and insurance thing is the phone calls.  The day we receive a bill, we get a phone call to see when and if we will pay it.  I have received follow up calls on $8 bills.  For God's sake people, we just received the bill.  Are you really that hard up for $8?  I have honestly considered setting up a new number with the voice mail message, "We have received your bill and are reviewing it.  We will pay it when and if we decide it is valid" and using that number for all our doctors.

I did have a bit of a breakdown this week, wondering if our little boy will really have to go through this for the rest of his life.  It breaks my heart to think of any hardship he might have, thinking that he will have this frenzied pace just to keep up.  I hate to say it, but I had a case of the, "it just doesn't seem fair."  And I don't mean not fair for me, I mean for Ronan.  I will do this and more the rest of my life if it will help Ronan, even just a little.  I just keep praying that all this hard work now will pay off in the future, with Ronan catching up to where he needs to be and entering preschool without any issues.  That is our goal, but it feels like a million pounds on my shoulders to make this happen.  At some point, we will need to start to let go, and let Ronan be Ronan.  Let him be a kid, and let him figure out his way.  We will need to stop counting his calories, stop worrying about if he is babbling the right way, stop watching and analyzing his every roll, kick, and push.
My favorite guys

All that being said, I think that Paul and I have become very good at all of this.  We have short cuts and have delegated certain things.  But some days it still seems like too much and I wish that rather than worrying about cardiologists, advances in hearing aids, or facial therapists, I was worrying about Ronan starting to crawl, baby proofing, and how to keep up with a growing baby.  At some point I will stop announcing his every pound gained on Facebook.  At some point these things won't be such a battle and won't be a big deal.  I am looking forward to that day makes it a little easier to get through these periods of being overwhelmed.  Having such a wonderful husband helps.  Our wonderful friends, family, and the random moms and dads we meet in waiting rooms help.  That and a nice glass of wine.

In order to leave this on a positive note, I want to show you a video of Ronan with bubbles.  He loves them now.  It could not be more adorable.

Saturday, April 7, 2012