Wednesday, February 27, 2013

Puppies, eating, and more!

Every time I am feeling a little down about challenges that Ronan is facing, I think he picks up on it. I think Ronan somehow realizes it, and then tries to cheer me up.

This week I was feeling a little overwhelmed that Ronan's eating issues may be a bit deeper than I realized. It has become apparent that some sensory issues are at play here. We came up with our game plan... We solidified what speech therapy exercises we want to be doing each day, what our goals should be, and I contacted a few resources for some additional information. In true engineering fashion, I created some check lists and

excel docs :).

And, of course, Ronan decided to take things up a notch. After signing with Ronan since practically birth, he hardly signed at all for the first year. It was so frustrating to see all these other children picking up signs nearly every week. Even more frustrating to me, was that these children didn't have the challenges that Ronan does. He needed to sign!

Anyway, after a year, Ronan's only consistent sign was "dog". While cute, it didn't help us meet his needs. His second sign was "sign". He uses it when he wants to watch the video series, "Baby Signing Times."

This week, and in fact in one day, Ronan started using "more" and "eat"! I could not be more excited. Then today, Ronan used "hurt" to tell me his stomach hurt. It is as if a signing light switch went off! I think that one reason he is signing more, besides the fact that he is older, is that we are more consistent with our signing.

Ronan's other big milestone this week was one that I barely caught. He was on his play mat in the family room when I stepped into the kitchen to make his dinner. I kind of heard a muffled noise, so I peaked in at him. I caught him in quadruped, trying to lift his head up! I have never seen him get that far up into quadruped on his own before. I've been thinking that maybe he would walk before he crawled, but now I'm not so sure!

Although we started off the week with some rough news with eating, I'd say we are on our way to a great finish!

Sunday, February 24, 2013

The Opposite

'If every instinct you have is wrong then the opposite would have to be right'.  What a great episode of Seinfeld.  There are many days in which I think this must apply to motherhood, and especially to mothering a special needs child.  There are some days I think I was born for this, and other days when I wonder how we've managed to make it this far.

I had a day today that made me consider this approach.  The CHARGE Syndrome foundation hosted a feeding webinar.  Although informative, pretty much everything I'm doing with Ronan and eating is wrong.  Sigh.  

Every time I think I have CHARGE figured out, we get thrown a curve ball.  Tonight I got some really great tips concerning oral placement therapy.  For example, Ronan has been grinding his teeth a fair amount.  While some kids will just do this, in a kid with CHARGE it can mean a few things.  It can mean that the muscle that chews is actually weak, and that he's seeking input.  A weak muscle can mean that he doesn't feel safe eating table foods (and even that it isn't safe for him to eat them!)  This is the point where my hand is slapping my forehead for trying to basically force him to eat table foods.  There were probably 3 or 4 more times when I should have been slapping my forehead for doing the opposite of what I should have been doing.

I think that the sensory aspect of CHARGE, while not totally apparent at a young age, may be starting to show itself with Ronan.  We've been noticing a few sensory and integration issues.  He doesn't always like input on his bare feet.  He doesn't like his hands squeezed.  He doesn't like major chunks in his food.  

But, like most life lessons, I'm going to take tonight to feel sorry for myself and have a glass of wine.  Then tomorrow, the chewy sticks are coming out to help Ronan strengthen his jaw.  The brushes are coming out to help him with his touch sensitivities.  We had fallen into a sense of complacency with Ronan.  Major medical issues seemed like they were taken care of.  He seems to be progressing, albeit slowly, from a gross motor standpoint.  I think we need to start "upping our game", so to speak, regarding sensory items.  And all the wonderful tips I heard tonight, we will try to work into Ronan's day...

Friday, February 22, 2013

NICU Visit #3

Today we visited St. John's NICU again, dropping off some snacks for the nurses, and books for the three little babies there.  Each time we make this trip, it reminds me of the time our little Ronan was in the NICU. 

We did not have any idea that there were any medical issues with Ronan.  In fact, we had several additional scans and tests, with everything giving us the all clear.  Each time I see a happy message about someone expecting a healthy baby, I want to point out that so many of us thought we were too.  And many of us who even had a hint of a problem, did not find out until just before birth.  I never want to scare anyone, but it's a thought that never stops crossing my mind when I hear people making those announcements.  I have no doubt that when another little Marsolan baby is in the works, I will always have that lingering thought...

After Ronan was born, we had him in the room with us for a few hours.  It was a magical time that I wish I had been more purposeful in remembering.  Granted I was recovering from a c-section, but those few hours are mostly a blur to me.  The most difficult part of that day for me, after basically going into shock when I heard my baby may be life-flighted to Children's Hospital LA for open heart surgery, was listening to my husband call his parents and tell them what was going on.  I will never forget that moment - sitting up in the hospital bed, watching and listening to my husband try to put together that story.  Paul has been and will always be my rock, he has always been strong for me when I needed it.  I like to think I am able to step up when he needs it, but in that moment I couldn't do anything but cry. 

There were a few things that really stick with me about that first night.  I wasn't able to go to the NICU that night to see Ronan.  Paul was able to go and take some pictures, but I couldn't leave the bed.  I was so heart broken that my newborn son needed me and I couldn't be there.  Second, there was a little baby in the room next to us who cried all the time.  All I could think about was that my son could be crying, and I wasn't there with him.  And I didn't have my little boy in the room with me. 

On the flip side of all these negative emotions, was the development of our cheering skills.  Never did I think we would be celebrating even the smallest milestone with such fanfare...  I remember celebrating when he would eat for more than 10 or 15 minutes.  I remember being so happy when we got one of our few "all clears" from one of the many specialists who visited us (it was that his kidneys were normal - woohoo!)  And, I remember the moment we were discharged...

Finally taking my little boy home!

Wednesday, February 20, 2013

Ronan's first day at school!

Today was such a momentous day for our family - Ronan had a trial run at "school".  School for Ronan is a center focusing on children with development or other delays.  We considered a few in the area, and found a great one that has a mix of both "typical" and special needs children.  Side note, I loath using the word "typical"...  first, what constitutes "typical"?  Second, I almost feel like it is demeaning to the children who call in that category.  But I generally have issues with labels :) 

Let me take a step back for a moment.  This is a HUGE leap forward for Ronan.  For so long we didn't know how Ronan's immune system was.  We didn't want to expose him to any possible illness.  Crowds and noisy environments were sometimes too much for Ronan.  He was a medically complex and fragile child.  To even be considering starting him at a program like this is a big step in Ronan's development. 

All ready!

The center Ronan went to has children 18 - 36 months at a wide range of stages.  We visited the center last week, and to be honest, I was worried.  We have fallen into this period of normalcy with Ronan.  Things seem manageable.  We are doing things I would expect to do with any child.  Visiting the center was a slap in the face for me - I did not realize how different our lives are in some ways.  Ronan is so much further behind than any of the other children.  Although there are two others with glasses, no others have hearing aids.  None have a facial palsy.  Granted I do not know the journey each of those children has had, but seeing the other children running around, talking, and doing other more advanced activities was a reminder how how much further Ronan has to go.  I was also (and still am!) worried about other children pointing out these differences or simply ignoring Ronan.  I know that one day we will have to deal with these realities, but I am hoping we get a bit more time in before we have to take those realities on. 

Today was amazing.  Ronan was assigned to the red group with two other little boys and a little girl.  The other children were all between 2 and 3 years old.  Ronan immediately took to the two women who were the red group leaders.  He sat in "circle time", and played with a few puzzles.  He stacked rings.  He read books.  Better yet, other children immediately came up to him and played.  There were several times during the day when Ronan interacted with other children.  I simply cannot explain how wonderful it was to watch this.  We could not have been more proud. 

Ronan did get a little overstimulated a few times, but Paul and I were there, ready to cuddle with him.  Best part of the day?  There were two: standing in the corner with Paul while watching Ronan do a puzzle with another little boy, and seeing Ronan trying to pull himself to standing!
Team work with a puzzle

Friday, February 15, 2013

Paying it forward: Take 2

At the beginning of the year, we made a pledge to visit children's hospitals or children's units on each holiday. Since Paul was out of town on valentines day, we decided to make that holiday visit tonight. Cheating, I know, but Paul really wanted to be able to come along.

We decided to try to go to a new place each holiday rather than going to just St. Johns or CHLA.  Tonight we went over to UCLA Santa Monica and visited their NICU. There were 6 little babies there tonight.  We brought goodies for the nurses and staff there and a book for each child. This time I also included a little note about Ronan.  We also wanted to bring Ronan each time.  I know I am biased, but hearing how far Ronan has come even motivates me to be a better person, and gives me hope.  Tonight poor little Ronan was so tired that he couldn't make it to the hospital.  He was there in spirit!  We love you Ronan!

Thursday, February 14, 2013

Happy Valentine's Day!

Happy Valentine's Day!  Besides being Valentine's Day, today is the final day of Congenital Heart Defect awareness week.  I've posted about the odds of having a child born with a congenital heart defect, and I've posted about the lack of research for congenital heart defects. 

But really this little guy is the heart of the issue, so to speak. What I think is amazing about this cause, is that it directly affects Ronan's future.  Ronan will need further repairs done to his heart.  If the research and field just isn't there, he will have another open heart surgery.  If the research is there, he may have a cath procedure instead.  We are so close, so very close, to having a repair procedure that can be done in a cath lab.  Maybe it will be an outpatient surgery.  At this point, I'm probably dreaming, but still, this is what research dollars could bring this adorable little valentine.

The whole day before Ronan's open heart surgery was a blur to me.  You know first hand how many pictures I take of this young man every day.  The day before his surgery I did not take a picture.  Not one.  Even though I felt that Ronan was going to be OK, I kept thinking, what if this is his last picture...  I just couldn't bring myself to take that last one.  In hindsight, I wish I had taken just one of his chest, so he would see himself without his "zipper". 

The day of Ronan's surgery, I was so very thankful they took him back at the very early hour of 6am.  I don't think we could have stood the anticipation of the surgery.  For me, the more difficult part was thinking about how Ronan's heart was STOPPED.  There was a period of time where he had no pulse.  His heart did not beat.  Does that mean he was alive?  I don't think I hardly breathed during that part of his surgery.  For me, I felt that if we were able to get his heart beating, we were home free.  Now I realize the most dangerous part is after the surgery, as you are stepping down medication, removing tubes, and extubating. 

What I dread now is those questions that will come later.  Why?  Why, mommy and daddy does my heart not work like everyone else's?  Why do I need another procedure?  Although part of me really dislikes when people say, "at least he won't remember."  I always think, but he will have to be told.  And he will have to be told about his next procedure.  And his next after that.  And, I remember.  Paul remembers.  Our parents who flew out on a moments notice remember. 

When Ronan was in the CV ICU, he had a roommate.  A lovely little baby girl, Ella, who has born with a half a heart.  I've remained in touch with this family...  here is their story.

Happy Valentine's Day!  Please consider children who are born with with a congenital heart defect next time you are donating to a charity.  

Wednesday, February 13, 2013

A Few Steps Forward

At physical therapy
And...a few steps back.  It's been awhile since I wrote a Ronan update - here's what he has been up to! 

Ronan has been doing some great things this last month or so.  Most prominently, he has started to stand!  This is unbelievably huge for him.  Ronan has struggled with hypotonia or low muscle tone since birth.  Hypotonia is not uncommon for CHARGE kids.  Also, his congenital heart defect significantly impacted his gross motor skill development.  Prior to his surgery at 6 weeks, Ronan got tired very easily.  Even eating would make him tired, which is a notable symptom of a congenital heart defect.  After his surgery, we had to give his chest time to heal.  He was not able to do tummy time or other similar exercises for just over 8 weeks.  That brings us close to Ronan's four month birthday before he was able to start doing these strengthening exercises.  We were just so excited and proud when we could help him into standing, and let go for a few moments!

Another wonderful milestone for us has been getting Ronan to clap.  We have been working on a lot of mid-line exercises for quite some time, like encouraging him to bang two objects together.  Ronan has also been clapping other people's hands for a few months.  We just couldn't get him to make the leap to clapping his own hands :)  At Christmas, I caught him clapping once.  Then, over the last month or so, he has started clapping when he gets excited.  He's also started modeling Paul or myself when we clap.  It is very adorable.

Seriously, mom?!
Lastly, we met with a dietician as part of the cranial facial team clinic last week.  She told us that Ronan is doing fabulous with his weight gain, and that he has a very healthy weight to length ratio even though he is on the lower end of the separate weight and length growth charts.  She recommended cutting back on some of our additives to his food, and recommended we consider cutting back on our tracking.  Although he may lose a bit of initial ground, in the long run it would be good for Ronan and for us.  Her comment was, "sometimes you need a professional to tell you this: please try to worry less. He's doing great!"  In some ways, Ronan's diet has been one of the only things that Paul and I have much control over.  It will be hard to give that up.

Now onto the not so great news...  We have recently started to see Ronan crossing one of his eyes again.  Last time this happened, his vision had changed dramatically and he got glasses.  I'm hoping that maybe it's just a case that his other eye is now far sighted, or maybe (long shot) his vision has improved.  The thing I'm most worried about, though, is the possibility that his vision is simply not good in one of his eyes.  His left is most affected by his coloboma, and we've been told that although initial tests showed that his vision did not seem to be affected, that we would really just have to wait to truly know the affect on his vision.  We have scheduled a follow up appointment for Ronan. 

Paul and I also finally got the initial results from all the hormone testing we did back in December.  It appears that his TSH (thyroid stimulating hormone) is a bit high.  We will be doing some further testing in the next month to see what we need to do.  What is frustrating is that we did an initial hormone workup with Ronan when he was a few weeks old.  I'm not sure if this was not an issue then, or if this wasn't tested.  In babies, elevated TSH can cause issues with feeding and weight gain, as well as abnormal muscle tone.  Sigh.  It hurts my heart to think that this could have been a contributing factor to some of Ronan's delays with his gross motor skills and weight gain.

Although we have a few set backs here, Ronan has made such amazing progress, especially in the last 6 months!


Sunday, February 10, 2013

Sitting up!

I know it's old news that Ronan is sitting up. He's been sitting on his own for bits of time since about 10 months. Around 13 or 14 months, Ronan could sit unassisted for about 15 minutes. Now at 17 months, he can sit until he gets tired.

It's been a long journey of getting him to this point, but it still makes me so proud to see him sitting on his play mat. Ronan is still trying to figure out what to do when he gets tired; he hasn't learned how to make the transition from sitting to laying down. Right now he just yells until he has our attention, then waves his hands around. It's pretty cute!

Ronan and Izzy enjoy watching Baby Signing Times together. I think Izzy loves it as much as Ronan!

This picture really made me see how much he's transitioned into a little boy!

Ronan made these faces tonight when I told him it was time to go to bed.

This is Ronan's smile. I personally think his facial palsy gives him a little extra charm :)

Friday, February 8, 2013

Heart Week

Ronan's "zipper"
In my last post, I talked about the odds.  The odds of having a child with a congenital heart defect are one in 100.  Even typing that seems wrong to me - it seems like it should be far more rare.  Given that I went into the hospital to give birth to Ronan thinking I had a healthy baby, I never gave it a second thought that he could have any defect, let alone a heart defect.

A friend mentioned to me the other day that he didn't realize those were the odds.  I had made a comment about the prevalence of congenital heart defects, and that 50% of all children born with congenital heart defects will require at least one invasive surgery in his or her lifetime.

Let me say that again.

50% of the 1 in 100 children who are born with a congenital heart defect require at least one invasive surgery.  That is 1 in 200 children.  Congenital heart defects are the leading cause of death for infants.  Twice as many children in the US die from a congenital heart defect each year than all forms of childhood cancer combined.  Funding for pediatric cancer research is five times greater than funding for CHD research.

How is this not at the forefront of news? I see St. Jude's commercials all the time.  Pediatric cancer is horrific, but how is something that kills twice as many children hidden behind those stories?

Case in point.  Here is Shaun White's St. Jude commercial.  While it is wonderful that he took time to shoot this commercial, what you may not know is that Shaun White has a congenital heart defect.  Moreover, it is a complex one - Tetralogy of Fallot.  He had to go undergo two open heart surgeries.  Why isn't this commercial about congenital heart defect research and overcoming those odds?  Why isn't this commercial about pulse-ox testing for children before the leave the hospital? 

While we are talking stats and funding, only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.  Of every dollar the government spends on medical funding, a fraction of a penny is spent on congenital heart defect research.  But what does this really mean?

Ronan is lucky in the world of congenital heart defects.  His, while requiring life long management, is one that can be easily monitored and controlled.  Ronan had open heart surgery at 6 weeks to correct his pulmonary valve.  Unfortunately, they cannot replace a valve at that age, they can only provide a band-aid that will hopefully last for awhile.  He will require additional interventions in the future.  Here's the thing, though.  His next intervention could be a cath procedure rather than open heart surgery, provided the technology is there.  Rather than having his chest opened up, having an extensive recovery, and having all the things involved with open heart surgery, he could have a cath procedure.  Provided the research has been done.  We are close, so very close.  This leap could be made within the next 10 years, which would place Ronan right in the cusp of potentially benefiting from this leap in congenital heart defect management. 

There are very few organizations that primarily fund congenital heart defect research.  The Children's Heart Foundation is one of the few.  If you want to do something, consider becoming involved with an organization such as this one.  You can also donate to your local children's hospital, and designate the funds be used towards cardiac research. Let's not make this little guy go through another open heart surgery. 
Wearing red for congenital heart defect awareness

Wednesday, February 6, 2013

Odds are...

My brave little boy just after his open heart surgery
1 in 14,000: Odds of being born with CHARGE syndrome
1 in 10,000: Odds of being born with a coloboma, a "cleft" of the eye
1 in 5,000: Odds of being born with a facial palsy
1 in 500: Odds of being born with a hearing impairment

1 in 100: Odds of being born with a congenital heart defect

1 in 100.  1%.  While thinking about those odds, I found it interesting that I was tested for a number of birth defects while pregnant with Ronan that had far, far greater odds.  I had more testing than most women, due to some family history and other factors, and everything came back perfect.  Spick and span.  One thing that Ronan was never evaluated for while in utero or just after birth was a congenital heart defect. 

Like I mentioned and like most women, I was tested for many other disorders and syndromes that were far less likely.  I looked up those odds today.  1 in 16,000.  1 in 5,000.  1 in 18,000.  1 in 800.  Even more interesting was that Ronan was tested for a hearing impairment while in the hospital.  All children born in the state of California are tested.  For those of you who may not have noticed this test, it isn't quick.  It requires additional resources from the hospital.  Specialized equipment.  A person trained in how to use and interpret the equipment and results.

Ronan was not tested for a congenital heart defect.  The very defect that was most emergent for him, the very defect MOST likely.  Does anyone else find that a little insane? 

I've heard some of the arguments.  The cost of a false positive is high.  An echo is a couple hundred dollars.  Small price to pay for ensuring the safety and health of a child, especially for a birth defect as prevalent as a congenital heart defect.  We already spend money to test hearing, to test for other syndromes less common.  Why not test a child's heart?

The CDC estimates that a pulse oximetry test (pulse-ox) would take between 1 - 5 minutes, and cost between $5 and $10 dollars per baby.  It will not catch all congenital heart defects, but it targets critical congenital heart defects.  It tests for those defects that require surgical intervention soon after birth.  There are seven critical heart defects that would be caught with this simple test.  Those seven defects comprise 31% of congenital heart defects. It is a test that is slowly being added to newborn screens.  Please check it out here:

As parents, we do all we can to protect our children and keep them healthy.  Why not test them for a birth defect that affects one in every 100?