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

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. 

My Heart's Worries

Not a care in the world :)

Far too often it feels like parenting has become a contest.  Who walks first, talks first, reads first, you name it.  I've written before about how judgmental I've been of parenting, as terrible as I feel now about it.  Even in the special needs and medical communities, it has sometimes felt like a contest.  Sometimes it feels that every concern can be trumped when we should be supporting one another unconditionally.  I'm so lucky to have found some support groups where members don't need to have these concerns, but not everyone is as lucky.

When you become a parent, not only are you suddenly responsible for this new life, you now have this heart full of worries.  Some may have financial concerns, and may worry about providing for their child.  About being able to purchase the right toys for development.  The right food for healthy growth.  The best doctors for healthcare.  Other parents may not be ready for the toll that a child can take on a relationship, and they may pack their box full of worries about being a team.  Staying together and working together.  How they can care for a child and a relationship.

My heart was quickly filled with medical concerns when Ronan was born.  Thank goodness I had five months of maternity leave to deal with all these worries!  I worried about Ronan's heart.  About his prognosis.  About if I would get to see him grow and develop, or if I would have to say goodbye.  There was no room for anything else.  Now as we've slowly chipped away at medical issues, my worries have shifted to developmental concerns.  I worry about Ronan being able to enter a typical school.  I worry about his language skills, as I've started seeing him struggle with communicating.  Each time something comes out of the box, I find something else to replace it with.  Not as concerned with the immediacy of another open heart surgery?  Great, now please worry about your child's gross motor skills. 

A walk with my family does wonders for these worries

Here's the thing.  These new worries are no less important to me than the others.  They occupy the same place as the medical worries did.  Before I could sit and read for hours about heart conditions, new medical studies, and research heart valve replacement procedures.  Now I could spend a day researching vestibular therapy, hypotonia, walkers, and orthotics.  Although there has been a shift away from more pressing, life threatening medical worries, these new worries take just as much mental capacity and just as much work on my front to get through.  The point is, these items are important to me.  Sacred to me.  They are in my heart.

These worries are just as important to me as anyone else's worries are to them.  They occupy the same place for us. 

While the contents may differ from parent to parent, my worries are not any more or less important than any other mother out there.  While I am struggling so much with Ronan and his eating, and my  greatest fear, at the moment, is that we will end up with a feeding tube, this is no more important than any other mother's greatest fear. We all have different worries about our children.  We find different ways to fill our this part of our hearts.  So maybe the next time someone approaches you with a concern you find trivial, you can take a deep breath, and realize this worry has just as much weight and meaning.  That it may occupy just as much time and energy as yours.  It is in their heart.

In this same vein, I leave you with a video from the Cleveland Clinic that has been making the rounds, "if we could see inside each others' hearts."

Standing... and more!

Over the last few weeks, our little boy has been standing!  No pulling up yet, but standing nonetheless.  I am so proud of him; he has had to overcome so much...  hypotonia, balance and vestibular issues, and open heart surgery recovery.  Each time we thought Ronan would never do something, he'd suddenly "get it". 

I'd like to think it's all the work that we put in with Ronan, but I think it was a combination of many factors.  First and foremost, I think going to school has given Ronan the chance to see and model other children.  I have a love-hate relationship with school, given that Ronan seems to be sick as much as well now, but I have to give credit where credit is due.  Ronan's hard work with his physical therapist, and the constant practice going through the motions of sitting, standing, and walking was another factor.  There was also Paul's unending practice with Ronan and the "daddy workout".  There were many, many days when Paul would put Ronan in a standing position, and all Ronan did was cry and hold his feet off the floor.  And then, simply being ready and feeling comfortable pushed Ronan to make this leap. 

Practicing at school

After seeing how quickly Ronan went from a wobbly toddler to feeling more confident with his
standing, I talked to his physical therapist about the W-word.  Walking.  He's been practicing on the treadmill for months now.  He can stand while holding onto something for a good 5 minutes.  He's starting to play with toys while standing.  I told our PT that I was hoping Ronan could take his first steps around his 2nd birthday in about three and a half months...  I won't lie, I was soooo disappointed she didn't share the dream I had for Ronan on his second birthday, but it doesn't mean it won't happen.  This wouldn't be the first time Ronan did something we were told he wouldn't do. 

Ronan could see when we were told he wouldn't.  He went home for 6 weeks when we were told he would need immediate open heart surgery.  He could hear when we were told he failed his hearing tests.  This little boy has done so much more than most given him credit for, and I'm going to take a page from his book and have some faith.

Sometimes daddy makes me practice upside down!

Turning Over a New School Leaf...

This week was a big week for Ronan.  Our little guy officially started school!  Ronan is attending a fantastic program three days a week.  It is a mix of (*deep breath*) "typical" children and developmentally delayed children.  Ronan had a great trial run a few weeks ago, and we all decided that he was ready for this big jump. 

On Monday, unfortunately, there were a lot of tears.  I went with him the first day.  I think he knew how excited I was for him, and I think he just needed one more day, holding onto his momma.  But, Wednesday was a better day, and Thursday was a great day.  Those days he smiled.  He read books.  He played with puzzles.  He played with other children.  I am so very hopeful that this will be a jumping point for Ronan; that he will see other children crawl or walk, and decide he should too.  That he will hear other children talk, and decide he should too.  The elephant in the room is each passing month when Ronan should be doing these things and he isn't.  I hope this is what Ronan needs. 

Ronan has a number of schedule changes this week.  Besides school, Ronan started OT this week.  We have been waiting for over a year to get on this particular OT's schedule, and I am already so excited by what she will bring Ronan.  Paul and I have asked our OT to help and focus on eating with Ronan.  We just have to make the leap to table foods.  We have our homework assignments, and hopefully we will start to see some results. 

Our busy little boy will now be doing the following:

• Mondays: School
• Tuesdays: PT & speech therapy
• Wednesdays: School & OT
• Thursdays: School
• Fridays: PT

We will add his 3rd session of PT back in once he's settled into school.

Ronan works hard for where he is today.  We work hard to help Ronan get where he is today.  Ronan has a team of people - therapists, friends, and family - who help him get where he is today.  You have no idea how many days I wish he didn't have to do this.  That I wish his days were filled with parks, play dates, and just general, carefree times.  But I am so proud of him!  Every day he does something that amazes me.  He has done so many things were were gently (or not so gently) prepared for him not to do.  I think what gets me down some days is that he has to do these things.  I'm sure every parent feels like this at some point, but I wish I could work hard for him.  I wish he just be a 19 month old.

Today Ronan was playing on his mat while I was talking to our nanny before she went home.  As we were talking, I looked down and waved at Ronan.  He looked up, and signed "momma".  And that reset my heart, and built my spirit back up to tackle another day.

Physical Therapy

I often get questions about what a baby does in physical therapy, and about why Ronan needs physical therapy.  I frequently hear, all children develop at different rates.  While true, in Ronan's case he needs a little extra help in learning these skills.  He needs help with motor planning and his reflexes.  He needs help building his muscle tone.  Since Ronan missed so many months of tummy time simply moving around, he lacked the early practice that most kids had. 

Ronan goes to physical therapy 3 days a week.  He's been doing this now for several months, with major progress just in the last month or so.  Paul and I have figured out that consistency is the key for Ronan making progress, and I think that extra day gave him just a little more practice that he needed to make the next leap. 

At 18 months, Ronan should have been sitting easily and crawling.  Making transitions between these positions, and making the transition to standing.  He should be cruising, and at least starting to walk.  This month marked a sad milestone for me - Ronan is one full year behind in gross motor skills.  He is considered to be at a 6 month level.  When we got this feedback at 14 months, we pushed to get him into PT 3 days a week for the added practice.  Although he is still not walking or crawling, I've seen Ronan spontaneously get into quadruped.  I've seen him catch himself far more frequently before when he feels off balance.  He has started transitioning from sitting to laying down, albeit not very gracefully.  And, most impressively, he has started standing.  Ronan can stand for a few moments, but I remember very clearly when he could only sit for a moment or two unsupported. 

In PT, Ronan usually starts with practicing quadruped, and transitioning in and out of it.  Ronan practices sitting while doing a task, thereby making him sit without supporting himself with his hands.  Sometimes he will practice skills on an exercise ball, which I highly recommend to anyone with a child who needs a little extra gross motor practice.  It has been invaluable with pushing up and other skills, as we can angle him on the ball to accommodate his strength.  We practice this a lot at home, during the "daddy workout" that Paul does each afternoon. 

My favorite part of PT though, and now one of Ronan's, is treadmill time.  He gets strapped into a harness and practices walking and cruising.  Last time I went to a session, I was pleasantly surprised to see him smiling during this time.

In trying to be more consistent with Ronan's gross motor skills, we now have a check list for 3 skills to practice several times a day.  We practice transitions 3 times per day, standing 2 times per day, and quadruped 3 times per day.  Although I think we could practice and do many of the things Ronan does in PT, I love watching our PT with him.  She is able to get him to do things that we are only able to do several weeks later.  A fantastic PT has been an integral part to Ronan's improvement!

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!