Friday, May 25, 2012

Two steps forward...

I've been taking a bit of a hiatus from blogging, mainly out of superstition.  Silly yes, but we all have them.  Paul once claimed that he had to stand a certain way while holding hands with another person's hands in order to win a football game.  We've had a series of good doctor appointments.  I'm considering it a bit of a mother's day gift.  But, along with those good appointments comes the lingering feeling that this is the "calm before the storm," so to speak.  I feel awful that I cannot just enjoy these simple wins.  I want to be excited and happy for Ronan's progress, but I am so scared that something else will happen.  So, let me tell you about how my little boy is kicking some major behind....

Ronan saw our pediatrician, Dr. S, at the beginning of the month.  She could not have been more happy with Ronan.  Not only did he creep his way back on the growth chart for weight, hitting the charts at 1%, but he also got onto the chart for length at 5%!  She literally high-fived us.  Dr. S also remarked that Ronan's breathing has gotten much better.  Since the heart surgery, he has had a bit of retraction.  The negative pressure would draw in his chest.  While not super uncommon with infants, his had lasted longer than what we wanted.  Amazingly, she wants to see Ronan again in 4 months!  There was a time we were seeing her several times a week, so going 4 months is a big deal.  Best comment of the appointment?  When Dr. S said, "Ronan just seems happier."

I'm 9 months!
Later that week, we took Ronan to Dr. A, his cardiologist.  Dr. A was also happy with Ronan's weight gain and overall appearance.  He went ahead and did an echo-cardiogram, which I had secretly been hoping would not happen.  Last appointment Dr. A told us that he would only do an echo if he thought it was necessary.  In the month or two leading up to this appointment, I had been hoping we wouldn't need one, but Dr. A wanted to check if Ronan's right ventricle had grown or if it had remained the same size...  If you remember back to a few earlier posts, prior to Ronan's open heart surgery there was a concern about cardiomyopathy.  The right ventricle thickness could be an indication that there may be something else wrong.  Thankfully, his ventricle has remained the same :)  Another big win for my little man!  And, his next appointment is in 5 months!

And with some steps forward, we did have a minor set back.  We've been noticing Ronan has crossed his eyes here and there these past few weeks.  I emailed back and forth with Dr. D, our pediatric ophthalmologist, and he felt it was best for us to come in to evaluate Ronan's eyesight again.  First, let me say how fabulous it is to be able to email our doctors and actually get answers.  It takes a layer of stress and makes this whole process less annoying.  Second, this brought back memories of our 2nd pediatric ophthalmologist who brashly told us, Ronan could be blind, there's no way to tell until he's older.  I don't want our doctors to paint everything with rainbows, but I want them to be compassionate and cognizant of the journey we have and will always be on.  We will always have things like appointments, insurance coordination, follow ups, and a multitude of other health related things to do and worry about.  Being just a little aware of that goes a long way.  Anyway, that follow up is in a couple of weeks, so please keep Ronan in your thoughts. 

Hanging out with Dad!
Next week we have another consult set up for Ronan with a plastic surgeon who specializes in facial reanimation.  Should be interesting to see what he has to say.  We also saw an OT this week who works with children pre and post facial reanimation.  She was very positive about Ronan's case.  One big positive indicator for her was the fact that he seeks input on the palsy side of his face.  We will go back to see her again in two weeks, and hopefully measure the difference in response between the right and left side, then start exercises.  Fingers crossed!!

I'd like to share with you how absolutely adorable our son was this past week with his dad playing the guitar.  I watch these videos at least a couple times a day.  It melts my heart :)

Saturday, May 5, 2012

Four Years...

May 3rd, 2008
I've been thinking a lot about how much things have changed over the past four years since Paul and I were married....  We were living in Ohio.  I worked for GE at a lighting factory.  We lived in a house, could walk to the Ohio State campus, and were deciding where we wanted to move later that year.  I had heard from some graduate schools, but I was still waiting on a few stragglers.  We had some hints that there was something wrong with my dad, but he was still doing pretty well.  And, I'd like to also say I had the wedding of my dreams (thanks Mom and Dad!!)  It was so beautiful, and so many of our friends and family were there.  I could not have had more fun.

Fast forward four years, and we have just moved back into a house but in Santa Monica, CA.  I have a job I love at CBS Interactive.  Paul has been navigating the start up world.  We have a dog, and this special little baby.  Although my dad is no longer with us, I see hints of him in Ronan.  Ronan has a wave in his hair, reminiscent of my dad.  He also does this thing with how he bites his lip that my dad always did.  I noticed that almost immediately after Ronan was born.  It was as if my dad was saying hello.  We were able to have my mom come out for the first few months I went back to work, which helped me with my transition.  And I have seen my relationship with Paul mature into a wonderful marriage, and a true partnership with all that we do in life. 

There is absolutely no way I would be where I am now without Paul in my life.  We've often heard from doctors, nurses, and others who work with sick children that many couples are not able to make it through times like this.  That rather than supporting and lifting each other up, feelings of guilt and the overall pressure and pace will hurt a marriage.  In our case, Ronan and his journey has brought us together.  When I am feeling unable to call another doctor or research another symptom, Paul is the one who encourages me and supports me.  And when the roles are reversed, I do the same.  We seem to balance each other out, and luckily there have been very few times when we have both felt down and out at the same time. 

Paul and I went out to dinner on our anniversary, and we were talking about favorite times and memories from the past 15 years (I cannot believe we have known each other so long!)  One of our favorite memories together was training for our marathon in 2010.  Sounds crazy, I know, but we loved all those long runs together.  I always needed a bit more pushing early in the runs, and then I was the one who pushed at the end.  We balanced each other out, and learned how to encourage one another.  Thinking more about those runs together, I realize now that has set the tone for how the two of us are working through life, and especially Ronan's diagnosis.  It truly is a marathon.  There are points in this marathon where one of us needs a break, the other is there to help.  Same goes for Ronan, there have been times where it seems that he's humming right along at this fantastic pace, but then there are other times when the marathon seems endless and difficult.

Ronan has really been doing well these last few weeks.  It feels like we have great momentum, but I am nervous for the next two weeks.  We have some major appointments coming up...  a cardiology follow up, another geneticist appointment, and an immune system test.  It's been so long since Ronan's last cardiology appointment, that I am terrified that something dramatic has changed.  I keep telling myself that we would notice if something was not right.  This geneticist appointment is a big deal, we may end up getting Ronan tested for CHARGE, and we will discuss what tests we will do in order to decide if we will have more children.  I've always dreamed of having two or three children, but I want to do what is best for our family and for Ronan.  It is a struggle.  I loved being pregnant, and I loved those early baby days even though they were so packed with appointments, hospitalizations, and unknown.  And Ronan's immune system is one of the last major unknowns.

Please keep Ronan in your prayers these next few weeks!  And Paul, thank you for all that you do.  Thank you for keeping me going.  There is something very special about watching our little boy cuddle with his dad.  Here's to completing this mile of the marathon :) 

Thursday, May 3, 2012

Tuesday, May 1, 2012

My boys

Just relaxing!

Izzy's New Job

Gone are the days of lounging out on the balcony in the sun. Now she has to closely monitor Ronan all day :)