Wednesday, October 16, 2013

When do expectations become unrealistic?

After Ronan was born, Paul and I had to shift what our hopes and dreams were for our son.  That is absolutely not to say that we stopped dreaming for him, but rather changed how we thought of those dreams.  We went from the open ended, lofty thoughts of first words, first steps, and all the other "firsts", and were hyper focused on getting Ronan healthy.  We set goals for his weight gain before his open heart surgery.  We set goals for getting hearing aids.  For helping his vision.  For assessing his growth.  We compartmentalized and worried just about the next steps, not what was three or four steps down the road.

It was just too overwhelming.

Then, slowly, Ronan got better.  His appointments grew further and further apart.  Ronan went from weekly cardiology follow ups, to monthly, to every six months.  He went from what seemed like daily check-ins with our pediatrician to normal well-child visits every year.  During Ronan's first month of life, we literally had 42 doctor appointments.  I counted.  We had two to three a day.  Last month we had three doctor or specialist follow ups.  Our focus shifted to Ronan's development, and we started setting more goals...  By focusing on the next steps, we've been able to move Ronan forward.  He's had just an explosion of gross motor skill developments.  He's signing more often.  He's making all kinds of different sounds.  He's stronger.
Having fun at PT!

Our end goals have always remained the same for Ronan.  We want him to have a happy and healthy life.

Paul and I will do whatever it takes to get him there.  Whatever it takes. 

As part of that, we want him to walk.  We want him to talk.  We want him to have the same opportunities as other children.  We hold no illusions about what a CHARGE syndrome diagnosis may mean, but we have to have these expectations for him  If we don't have expectations for Ronan, he will never meet them.

One of the biggest challenges of caring for a special needs child is assembling a team who believes in your child as much as you do.

Not quite sure about the pumpkin patch
Everyone must be on the same page, and have these same expectations.  We have been lucky so far with the doctors, therapists, and specialists we have worked with, but I am starting to find that not all of them share in our end goals for Ronan.

I wonder, though, is it their job to set us straight if we truly have progressed from realistic to unrealistic expectations?  Or is it their job to support us, no matter how far fetched our goals may be?
It is a struggle to decide if communicating our expectations to our team for Ronan is enough, or if we need to search for a new team member when expectations do not align.  There is a long road ahead of us, and we need to have the right people supporting Ronan, and supporting us...

Sunday, August 25, 2013

Finally out of the rut...

For quite some time, it seemed like we were stuck.  What Ronan was doing, he was doing well, but it simply seemed like he wasn't doing many new things.  He was occasionally signing, but not using many new signs.  He was doing great sitting and much more confident in that position, but not able to get into sitting.  He was standing, but not moving his feet and Ronan had to work hard to just stand.  Ronan had gained one pound between December of 2012 and July of 2013... 
One pound in eight months!  

Sure there were bits of progress here and there, but no big gains.  We celebrated milestones like learning to put his hand out while he was sitting to steady himself.  Paul and I were doing everything we could to get Ronan to eat and gain weight, with little progress.  We kept wondering what else we could do... what we could do differently...  what we were doing wrong.  I think this is often the trap that a lot of special needs families fall into - the "what else" trap.   We would all do anything and everything to make something just a little easier for our child, but it is a balance.  Ronan cannot and should not be in therapy all day every day.  But, he needs the practice and since Paul and I work, we do what we feel he can handle.  But is that enough?  Does one
of us need to stay home?  Should we start Ronan in the new therapy that we are hearing about in addition to the other seven therapy appointments a week?  Or, maybe we are approaching it from the wrong angle, could it be that he needs time to develop on his own? 

Ronan standing at his cart in PT
These are the types of conversations we have on a weekly basis.  We are constantly researching new techniques and therapies, and trying to balance our learnings with what we are currently doing.  And I know we are not alone in these thoughts...

Much more confident standing!
Maybe it was Ronan's second birthday this month, but he has taken some giant leaps forward.  Here are a few highlights:

Ronan's school has told us that he's signing much more frequently now.  Ronan will asked to be picked up.  He moves to get toys that he wants.  He points to preferred items.  And, he has gotten himself into a sitting position.  TWICE! 

This past week in PT, Ronan was finally able to do wall standing!  He's been doing so great in his
treadmill harness that our therapist has been trying wall standing out without much luck, but last week he decided he could do it.  Ronan isn't always thrilled to practice, but he can do it!  Still no steps, but wall standing is great progress.  Ronan is also much more confident standing at our coffee table or couch.  He can play with toys, and balance with one hand. 

Ronan has also been matching colors and playing matching games.  He's also mimicking me, which he's never done before.  I can make a sound, and have him copy that sound. 

Wall standing!!
And, Ronan has gained a little more than a pound in the last month!  He seemed to increase his calories on his own too, by another 200 - 300 calories a day.  I'm not sure what is driving it, and to be honest, my initial thought was that this may be the first sign that his cardiac function is decreasing again.  It makes me a little sad to have thought of that first, but he doesn't show any other signs of an issue, so I'm going to stack it up to doing and moving more. 

It can be so disconcerting to plateau on many fronts for that length of time.  It really makes a parent question what is wrong, or what could be done differently.  What hurts the most is seeing children who are a year, year and a half younger whiz past where we are.  Everyone says to not compare, but that is easier said than done. 

We are happily celebrating these milestones.  We are so proud of you, Ronan!

Wednesday, July 24, 2013

And, away we go!

These friends will have to say goodbye for a few days
Today we leave for the CHARGE Syndrome conference in Scottsdale, AZ.  There is a professional day on Thursday, then two and a half days of parent sessions.  We will undoubtedly learn a lot about Ronan's little world, and will meet a lot of families and professionals who "get it". I have been both looking forward to and fearing this event for quite some time now. 

It took me a solid four months to start to see out support regarding Ronan's CHARGE Syndrome diagnosis.  During those first four months, I could hardly believe what was happening and that these were our lives.  It seemed surreal to hand my son over for open heart surgery.  What parent has to do that?  I kept thinking that we'd see just one more doctor/specialist/therapist who would fix everything, or some miracle would happen and Ronan would be better.  During these months, I also carried a lot of guilt, wondering if there was something I did during my pregnancy, some toxin I was exposed to, or something I could have done to prevent this from happening to Ronan.  I'm not sure that will ever go away even with everyone saying there was nothing we did wrong, but I rest easier now about it. 
At 6 weeks and 23 months

I remember the turning point for us.  Paul and I were sitting in the cafeteria of Children's Hospital LA.  We were looking around at the families there, and talking about the children we saw there.  We both grabbed each other hands.  I remember Paul looked at me and said, we can do this.  We can do
this together.  And from then on, that was our mantra:  

We can do this together.  

That was when I slowly started to transition from researching CHARGE to seeking out support.  I joined groups for CHARGE.  I joined groups for various aspects of Ronan's diagnosis, like groups for congenital heart defects, facial palsys, colobomas, and others.  I found great comfort when interacting with a group of people who just fundamentally understand the emotions of the unknown when it comes to a child's health, and who get the frustrations, pain, and sadness that can come with watching your child struggle.  They also understand how amazing even the smallest improvements and milestones are, and celebrate appropriately.  I am so looking forward to meeting these families who have supported us and cheered us on, especially in the early months. 

What does make me nervous, however, is the amount of information at this conference.  One way I have coped with Ronan's diagnosis has been to compartmentalize what I need to research and think about.  I pretty much worry about the next step for Ronan from a gross motor, fine motor, speech, and overall developmental standpoint.  This conference will force us to consider further down the road.  While not a bad thing, it certainly will be new ground for us. 

Here's to four days of intense learning, and to meeting some of the people who helped us transition into the family that we are today!

Friday, June 28, 2013

Finding all the answers

Over the last couple of weeks, Ronan has discovered something - his open heart surgery scar.  One night as I was changing him and getting him ready for bed, I saw him look down and touch the scar.  He ran his finger up and down it, as if he was trying to figure out what part of his body this is, and why it is there.  I've found him doing this a few other times. 

I've often thought about what I would say to Ronan about his open heart surgery and his heart in general.  About what I would say to him about his hearing loss and why he needs hearing aids.  About CHARGE Syndrome.  Every child will need to deal with being different at some point, but in Ronan's case his differences are a bit more evident.  Given that fact, we've had some experience with explaining what is going on with Ronan. 

I actually find most children's questions about Ronan refreshing.  There is no judgement, just genuine concern and curiosity.  I remember when Ronan was wearing his helmet and we took him to the Santa Monica aquarium, a cute little boy approached us.  He pointed at Ronan, and looked up at me, and asked in a concerned voice,
It's Super Ronan!

why does he need to wear a helmet? 

I told this little boy that Ronan had been sick and spent some time in the hospital.  I told him that the time spend recovering had made a flat spot on his head, and the helmet would help.  Then this little boy said,

Oh. OK.  I hope he feels better.  

Then after a pause, he asked me, do you think my head is flat too?  I had a cold awhile ago.

With adults, though, you get that look.  That look is either terror (WTH did I get myself into asking?) or pity (aww poor little boy).  I always try to follow up quickly with how well Ronan is doing and how happy he is.  He really is a happy little boy. 

Although I've come up with my repertoire of responses about Ronan, I have yet to come up with what I will say to him.  It terrifies me.  And seeing him cognoscente of his scar, reminds me that I will need to find these answers. 

At the beginning of June, Dateline did a show on a family whose five children all have cardiomyopathy, a form of heart disease.  Two children had received heart transplants.  A third was showing signs of heart failure.  What really struck me though, were two things.  First, if I thought it was scary sending an infant into open heart surgery, I am even more scared to send Ronan in for
another surgery now that he's older. 

He may be bigger and stronger, but I'm not. 

I don't know what I will do when he tells me he's scared, or angry, or worried.  The other thing that I found amazing about this segment was watching the parents talk to their children.  They explained what was going on, translated medical terms, and were able to relate to the appropriate age of each child.  That takes a certain kind of grace. 

For now, I've started reading Ronan his Zip-Line book again, which is a children's book about heart surgery and scars.  We will also continue to approach questions with positivity, and make sure that happens in front of Ronan.  Sometimes I think people forget that even if a child has a special need of some kind, it does not mean they do not understand the conversation.  There have been a few cases when I've wanted to say to someone, hey, Ronan is right here.  He may not talk, but he understands a lot more than you'd imagine.  It is my hope that he picks up on the positive attitude that Paul and I try to put forth with all things Ronan, and especially all medial things.  This kid has already beaten so many odds, it would be a shame for him And, I hope that when the day comes to answer his questions, I will somehow have those answers. 

Tuesday, June 25, 2013

A dream is a wish...

Happy Father's Day!
Over Father's Day weekend, my mother came out to visit and we all took Ronan to Disneyland!  This was Ronan's second trip to Disneyland.  His first trip in January was great!  He loved the rides, and his favorite was the Haunted Mansion.  This trip, however, was totally different for Ronan.  I think he was just a bit more advanced and aware.  Not to mention, Ronan is in the process of getting the last few teeth. 

Ronan loved walking around the "A Bug's Life" area.  He seemed to like looking at all the large packages and plants.  We've just started putting movies on some weekends while we are playing with Ronan, and he really enjoys Monsters Inc.  I thought he'd love the ride, but instead he was terrified.  Same goes for Ariel's ride and Toy Story.  I think Ronan was just much more aware, and found things scarey.  I was a bit disappointed until a friend pointed out how very normal this is for a toddler.  And for a moment, it felt really good to have some typical toddler issues!


At the very least, Ronan enjoyed looking at the people in the park.  He's a people watcher.  His other favorite thing is to laugh at people's shadows.  Best part about this is that people have no idea that he's laughing at their shadow, it just seems like he's laughing at you :).  Ronan did get to see a lot of characters, but given his general reaction to some of the younger rides, we didn't try to take his picture with them.

We stayed at the Paradise Pier hotel, facing California Adventures.  There were two wonderful things about this place: first, we were super close, and could easily walk back for nap time, and second we got to watch World of Color from the hotel room.  During Ronan's first trip, we stayed at the Grand Californian, which was also close enough for nap time.  This is definitely the way to go with a toddler.  You know all those children sleeping peacefully in their strollers?  Ronan just pointed and smiled.  He was NOT interested in sleeping in his stroller, or resting at all. 

The adults, however, had a great time! Grandma got some wonderful snuggling in, post-Disney, and Paul and I got to go on some of our favorite rides. 
Grandma snuggles are the best!

Saturday, June 8, 2013

Ronan at Play

Ronan's car track toy
There is something amazing about watching Ronan play.  I don't know why, but I cannot get enough of watching him think, problem solve, and figure things out.  I suppose it is because Ronan is our miracle child, a little boy who has defied the odds.  A little boy who has done so much more than anyone imagined. 

Ronan has several favorite toys right now that are luckily ones that his therapists are also having him play with.  These toys all work on various skills that we are working on with Ronan.  This first one is a track that you put cars on to travel down.  What I love about it is watching Ronan try to put other objects down it.  He will put blocks, balls, and just about any other toy down this track.  I've even watched him try to put a book down the track!  It also encourages him to reach and manipulate.  Ronan has to pivot and change positions to gather the cars and position the track.  He has to problem solve. 

Trying the car sideways

Another toy Ronan has started playing with is one where you use a hammer to push balls into a container.  Ronan loves trying to figure out new ways to get the balls inside, and new ways to get the balls out. It helps with a few areas.  First, it helps Ronan with his hand strength and dexterity.  Second, it helps with problem solving.  We also work on colors with it.  I haven't gotten Ronan to use the hammer yet, but he will hold it and manipulate it.  He has also figured out how to push the balls in without using the hammer.

A third toy that I highly recommend is a board with gears.  This is something that Ronan's school has, and that we also have.  This toy has both small and large gears.  Ronan has to manipulate the gears to be in the right orientation and place them on the board so they interlock.  He can then try to spin them.  He loves this toy!  He could put gears up and take them down all day.  We also work on putting the gears away in a container, and with taking them out of the container.  This toy is a favorite of our OT, and for developing Ronan's fine motor skills as wall as helping him learn to follow directions. 

Trying out this variation of gears
In the last few weeks, Ronan has made so much progress with his play.  He tries to figure things out.  He doesn't get so frustrated when he can't make something work the first time.  And better yet, Ronan is starting to play while he stands.  He can stand at our coffee table or at his desk, and play or read a book.  And here is one more picture of our silly little boy...

He put this pillow on top of himself

Sunday, June 2, 2013

San Diego Half Marathon

Today, Paul and I ran the San Diego Rock and Roll Hall Marathon!  We had a really fun time, and felt great. What made this race special for us is that Ronan trained with us. He went on every single training run, high fiving us the whole time. Unfortunately, no jogging strollers were allowed, so Ronan spent the day in Santa Monica. 

It was a great running day - not sunny, and fairly cool. There were about 20 thousand runners!

We ran with some interesting people...

And some Elvises...  Note that their jogging stroller carried a radio playing Elvis and Bud Light. 

We even ran with Princess Leia!

But on a more inspirational note, several members of the military ran it too. One in particular, ran with his prosthetic legs. Amazing.  Unfortunately, I wasn't able to get his picture. 

We finished right around 2.5 hours. Not bad!  

One final inspirational item - this guy finished the marathon faster than we finished the half marathon... In a wheelchair.