Wednesday, January 30, 2013

We were OK...

As the parents of a medically complex and special needs child, we hear a lot of interesting comments.  We are asked a lot of interesting questions.  We get a lot of interesting looks.  Most of what we get is related to this belief that we are somehow better parents or stronger parents.

"I don't know how you do it."

I get variations of this comment.  All. The. Time.  I vehemently disagree that we are somehow better people.  I was that person, though, a year and a half ago.  Every once in awhile I would catch a glimpse of a mom of a special needs child, and wonder how they were so happy.  I wondered how she managed to do everything that she did.  I wondered how she managed to keep it together.  Never in a million years did I think I would be thrown into this world, but now that I am here, I can't imagine being anywhere else. 

Point being, we were just normal, everyday parents, given a child who needed more.  I am certain that most parents, after holding a precious little baby that they spent months preparing for, would do just about anything to keep that baby safe, healthy, and happy.  I have written about this before - Ronan is absolutely perfect, exactly how he should be.  How he was intended to be.  Sometimes this is a difficult concept to describe to someone briefly peeking into our lives of hearing aids, glasses, therapy, and appointments. 

A few months ago a video started circulating the special needs boards called Extreme Parenting.  Parents of special needs children took photos of themselves with signs saying what they would have told themselves at the start to this journey.  I think it is a very honest look into the transformation of a parent into a special needs parent. 

I remember those early weeks and months when we seemingly always got bad news, and I remember how Paul and I would motivate ourselves and keep ourselves sane.  I remember us telling one another that, "We can do this.  We were born for this.  We have the support and means to care for Ronan, and make his life the very best that we can.  And we will be OK." 

We made that transformation, and came out happy.  Sure, there are hard days.  There are incredibly hard days when all I want to do is curl up in bed with the sheets over my head.  But we are happier, stronger, and more joyful with life than we ever were before.  And without anything further, here is Extreme Parenting...

Thursday, January 24, 2013

Paying it Forward

St. John's NICU
Most babies are born healthy...  most babies are born healthy...  no, the vast majority of babies are born healthy.  This was my mantra the last trimester of pregnancy.  I stacked it up to nerves, but the last trimester of my pregnancy with Ronan was riddled with worry.  I just knew there was something wrong.  I remember a week before Ronan was born, I was laying out in the sun just repeating those words over and over, to calm my nerves.

But the fact is, not all babies are born healthy.  And here's the thing, most of the time we never suspect a thing.  We had testing.  Ultrasounds.  Some families have amnios, level 2 scans, etc, and never had a hint of a problem.  We never had a hint of a problem.  I had a picture perfect pregnancy.  I gave the answer, "as long as he or she is healthy" when people asked if I was hoping for a boy a girl; an answer that now makes me cringe.  Whenever I hear that now, I want to say, what happens if your baby is not healthy?  My answer?  Not only will you find strength and hope where you never thought it would exist, but your love for your baby will be unparalleled.

At the first sign of a problem with Ronan, he was whisked away to the NICU.  After he was released, we were in this stage when we couldn't hang out with anyone.  We didn't want Ronan to get sick, especially when we knew he could need open heart surgery at any time.  We also were in this information gathering stage with Ronan, where it seemed that every appointment brought bad news, worries, or unknowns with him.  It was hard to tell our friends and even family about those appointments.  It was incredibly difficult to talk about.  Now Ronan is a different baby.  He's doing new things every day.  Pretty much anything we were told regarding expectations, Ronan blew out of the water.

Our goodie bag
This year Paul and I really wanted to commit to giving back.  We wanted to help families who were in the same place as we were last year.   We wanted to do whatever we could to brighten a day of a family struggling with a medically complex or fragile child.  This year, we are going to visit a hospital each holiday, specifically a child's department, and give back to those babies and staff.  We were lucky with Ronan.  We never spent a holiday in the hospital.  This year we will.  That works out to be about once a month, which we think is totally doable.

The first holiday for us was MLK day.  We decided to go back to the scene of Ronan's first hospitalization, St. John's.  All the babies in the NICU got Whosit's, one of Ronan's favorite toys.  We also put together a little goodie bag for the nurses.  When we got there, we showed Ronan off.  He showed off too, babbling, smiling, and just being generally cute.  He gave the nurses high fives.  He was awesome.  The nurses loved seeing him again.  And we left our names and numbers, giving permission for the NICU to give it out to any family they think could use the support.

Next stop - Valentine's day :)

Monday, January 21, 2013

New Years Resolutions

Every year I come up with a few resolutions for the new year.  I'm luck if I make it to February keeping up with them.  This year, I thought I would write them down, and hopefully keep myself accountable for them.

Work-Life Balance
I thought a lot about areas I struggled in during 2012.  I went back to work in January of last year.  I can honestly say it was the hardest and easiest thing I've ever had to do.  It was incredibly difficult to leave Ronan, but I needed a change.  I needed a kick to get back to myself.  Obviously, Ronan comes first, but a mom's got to think about herself sometimes, right?  It was a challenge, to say the least, to figure out how to balance my life with work.

NYE: Made it to east coast NYE
This year, my resolution is to work at work, and be home at home.  Too often I find myself worrying about something with Ronan at work, or logging onto my computer at home.  Both Paul and I have made a pledge to be as productive and organized as possible at work, so that we can keep our work there.  Of course with the jobs we have, we will have to check in, but our pledge is to be work free from when we get home until Ronan goes to bed.  Given the fact that he's out by 6:30pm, this should be an easy one!

Time for Myself
In keeping with that same vein, I had a hard time taking time for myself last year.  After I went back to work, it felt selfish to do anything else that would keep me from quality time with Ronan and my husband.  I had more than a few breakdowns where Paul had to calmly tell me that I was being a little crazy, and that everything would, in fact, be OK.

Paul has lacrosse every Sunday.  He plays with this great group of guys.  I need a "lacrosse".  In 2012, my lacrosse was getting a manicure or pedicure each month.  I feel lame even saying that!  This year, I have a few goals:
  • Set up some time to be with friends on a regular basis...  aiming for lunch 2x per month, and an outing 1x per month
  • Try one new recipe a week
I love cooking, and too often I don't have the motivation after work.  This year I want to try something new each week.  I'm sure it will be on weekends more often or not.  I consider cooking to be a hobby of mine, and something just for myself.  I want to cultivate that!

Time for Others
As Paul and I navigated through this new special needs/medically fragile world, we barely had time to take care of ourselves.  We would plan on reaching out to a friend literally weeks in advance.  Thank goodness we have friends who would welcome us with open arms after ignoring them for months.  I have also had the privilege of speaking to a few families early in their journey, sometimes with CHARGE, sometimes with other syndromes or conditions, and it has been the highlight of these last few years.  There is something deeply humbling and rewarding about seeing other parents, and knowing exactly how they are feeling, and giving them a glimpse into where they may be in a year or two.

This year we have two goals:
  • Let more friends in.  Apologize less for having to "flake", our friends understand, they have stuck by us this long.  We met a family last year early in their CHARGE journey, and they talked about this very issue.  We get so caught up in our own lives.  Also, it is emotionally draining to go over everything with our child, that it is just easier to shut people out.  And then, one day when we need the support, no one is around.  I admire how they thought about this so early on, and I'm going to take this one from them.  Last year on our date nights, we took time for ourselves.  This year, I want us to start including friends some of the time.
  • Hospital visits.  More about this later.  We have a new start up/non-profit in the works! 

Oh, and we've got to take more time for this dog :)

Saturday, January 19, 2013

An experiment with eating

Starting in October, Paul and I began to notice a slow down in Ronan's weight gain.  The progress we'd seen with Ronan moving up the growth chart began to slip, and despite all our efforts, we weren't able to reverse that trend.  Finally, after a full month with not an ounce gained, we knew we had to make a change.

For quite some time I had been thinking about making Ronan's food.  It felt like I could barely take care of myself, let alone take time to make homemade baby food.  But, after he did not gain a single ounce over the course of a month, I decided to give it a shot.  It was far, far easier than I anticipated, and gave me a lot more options in terms of supplementing his food.  Also, I thought it might be more difficult for us to monitor calories, but it is really just as easy as with store-bought baby food. 

Many CHARGE syndrome kids have a difficult time with swallowing.  Sometimes it's the coordination of swallowing, other times it's an unusual airway.  Ronan seems to have the coordination down OK, but his airway is a bit smaller than normal.  It is also fairly typical for CHARGE kids to have some issues with textures.  While I can get away with fairly chunky purees, I have not gotten Ronan to transition to table foods for the most part.  Here's what I have been doing:

1.  I usually start with a sweet potato or regular potato, for the additional calories.  I then add in one more vegetable, and then a fruit for a little added sweetness.  I use a Beaba Babycook.  At first, I thought this was a bit of a superfluous purchase.  I have a blender, I can steam food.  This product makes it super easy, and all the cooking and blending takes place in one container, which makes for easier cooking and faster clean up. 

2. Once I steam the food, I then add my supplements prior to blending. I supplement all his food with butter and/or olive oil for added calories.

I also add coconut oil for two reasons: first, the added calories and fat, and second, the lauric acid and other MCFAs contained in coconut oil is very similar to breastmilk.  I had hopes of nursing Ronan far, far longer than I actually did.  I had to stop when he had some lymphatic system complications after his open heart surgery.  Adding coconut oil lets me feel like I'm giving him a little of what he missed out on.

Ronan's food is also supplemented with gelatin.  Beyond what you've probably heard about gelatin and its benefits for strengthening bones and joints, there are some that believe it can help stimulate the body to release stored growth hormone from the pituitary gland.  It is flavorless, but it does change the consistency of the food if you add too much.  I just stick to a sprinkle on his food.

Lastly, I have been picking a few different spices with each batch to help awaken his sense of taste.  We know that Ronan does not have a sense of smell, so I want to do whatever we can to help develop his taste.

3.  Once the food is blended, I divide it up into equal servings.  Here's where the math comes in...  I add up all the calories of the food, and write up the contents and caloric value of each container.  If he is going to eat the food within the next few days, it goes in the fridge.  If not, I freeze it.  Prior to Christmas I made several large batches of food, froze them in ice cube trays, and then stored them in ziplock bags.

What are the results?  I started making all of Ronan's food on December 8th.  After one full month, Ronan had gained 15 ounces!  I'm sure some of that gain was the result of no weight gain the prior month, but given the normal weight slow down after a child's first birthday, I think 15 ounces is pretty good.  Ronan went from the 6th percentile to the 10th percentile on the weight growth chart.  Woohoo!  Now I just need to start seeing similar jumps on his length/height chart.  He also seems to genuinely enjoy my food.  That combined with his weight gain has motivated me to keep up with making his food.  I can make the whole week in 2 batches, which takes about 45 minutes.  Not a bad investment!

I'm starting to research other possible supplements like flaxseed and chia seeds, and experiment with other spices.  Let me know if you have any suggestions!

Thursday, January 17, 2013

CHARGE On, Ronan

Well, it is finally official.  After 16 months of waiting and wondering, we now know that Ronan definitively has CHARGE Syndrome.  We lingered for 16 months in this “possible to probable” CHARGE Syndrome area, then we get clinically and genetically diagnosed within 5 days of one another.  Funny how these things happen.

When we found out in mid-December that we needed to go in for a high-res MRI ASAP to rule out hydrocephalus, Paul and I had a lengthy list of additional tests to be added onto the next time Ronan was put under general anesthesia.  Since he does have a critical airway, and he is a difficult intubation/extubation, we want to minimize the number of times he is put under.  Unfortunately, we were not able to tack on a lot of what we wanted due to the emergent need for the scan, namely we were not able to repeat the ABR (hearing) testing or get an MRI of Ronan’s heart.  We were able to add a number of endocrinology tests as well as 7 additional views of his head.  
Here’s what we found:

  • No hydrocephalus!
  • Ronan is missing his olfactory bulbs.  It is highly likely he cannot smell.  This is common for CHARGE kids.
  • Smaller than usual semicircular canals, this can affect balance and the vestibular system.
  • Smaller than usual cranial nerve VII and VIII (VII is what causes his facial palsy, VIII is part of his auditory system.)

There are a few other findings, but we have not received clarification on what those findings mean yet, if anything.  We are also still waiting on our endocrinology tests.

Ronan’s missing sense of smell was the tipping point of getting his clinical diagnosis of CHARGE Syndrome.  He has 2 – 3 of the 4 major markers, and now 2 – 3 minor markers, enough to push him into a full clinical diagnosis.  As luck would have it, we heard this week that he did test positive for the CHD-7 genetic mutation, a genetic marker for CHARGE.  This formally diagnoses him. 

We have mixed feelings about a formal/clinical diagnosis.  Although we clearly know that Ronan has some challenges, we always felt and will feel that he is our perfect little boy.  He is exactly as he should be, as he was intended to be, and we would never change a thing about him.  Of course we would want him to be healthy, but at the same time, this little boy has already taught us so much about ourselves, our families, and our priorities in life.  Saying he has a definitive diagnosis feels like admitting, in some ways, that something is “wrong.”  Nothing changed between last month and this month, nothing will change with his treatments or outlook.  Ronan is still the same funny, lively little boy who continues to enrich our lives. 

On the other hand, we are relieved to finally have an answer.  Moreover, since we know his genetic mutation, we can do some further testing and investigation if our geneticist thinks that is necessary.

What doesn’t change is that we do not know if Ronan’s cause for CHARGE was simply a spontaneous mutation, a 1:14,000 chance, or if it is due to something called a germline mosaicism, when one of us carries the mutation.  If one of us has that, our chances can be as high as 50% (but usually closer to 6%) for having a second CHARGE child.  Parents cannot be tested for a germline mosaicism, and the reoccurrence rate that we see ends up being closer to 1 – 2%.  It is sobering to think that we could have as high as a 50% chance of having a second CHARGE child. 

I feel in some ways we were born to be Ronan’s parents… that we were chosen to take care of him, and to give him every opportunity at life... that Ronan chose us to help us learn and grow... Paul and I have been brought together in a way I didn’t know was possible (and in a way I didn’t realize we were missing)!  CHARGE on, Ronan.  

Tuesday, January 15, 2013

My first (non-medical related) haircut!

This past weekend, Ronan got his first real haircut!  The poor kid has been dying for one for some time now.  I think I had just grown so attached to his cute hair...  not to mention how long it took to grow back after his first hair cut at 2 weeks.

As you may remember, Ronan got quite the haircut at 2 weeks - both sides of his head were shaved for a procedure.  He had so much beautiful hair at birth, I was sad to see it go.  Also, we were continually asked why we have our son a Mohawk at such a young age :)  Someone called us the ultimate hipster parents.  Sigh.

Anyway, not surprisingly, I was nervous about the haircut.  Ronan has pretty good head control, but he can still be a bit wobbly, especially now given how much bigger his head is than the rest of his body.  I was a bit worried that he could be extra wobbly today, especially since he decided to skip his nap.  We found a great children's haircut place a few blocks away, sat him on my lap, and he got his first haircut without any tears!  He really looks like a big boy now.  Funny how much a haircut can change a baby's appearance. 

Ronan must have expended a lot of energy on his haircut - afterwards, he passed out cold. 

Sunday, January 13, 2013

Catching up... with Santa!

I know, a little late, but given all the hubbub with Ronan, last minute MRIs, and clinic appointments, I didn't get a chance to fit in a post I had been thinking about for awhile.  This year, Ronan got to go see Santa!

This yearly right of passage for families was extra special for Paul and I.  Last year, Ronan was too medically fragile.  Too fragile to be out in the crowds in the midst of cold and flu season, too fragile to be held by a man who was no doubt sneezed or coughed on by more than one child.  In December of 2011, Ronan was only about 2 and a half months out from his open heart surgery.  He was just transitioning off his Enfaport formula, which he had to take for 2 months after complications from his open heart surgery left him with a damaged lymphatic system.  We briefly looked into trying to get him a special appointment, the first of the day, but then decided it was not worth the risk.

In mid December, we walked down to Santa Monica Place, and took Ronan to meet Santa for the first time.  He took a long look, scrunched his little face up like he was going to burst into tears, but then noticed the small, sparkling tree in the "Santa's workshop".  Ronan kept reaching, to indicate he wanted to go see the tree, and later settled into Santa's lap.  He seemed to know he was stuck there until we got a picture :) 

After getting this gem of a photo, Paul and I started the walk home, and talked about how different Ronan is after just a year.  He's rolling and scooting around.  Using his walker.  Babbling up a storm.  Gaining weight.  Doing things that, well, a normal baby does, albeit a bit later.  Recently, I have been taking stock of how far Ronan has come, and how different things are than the previous year.  I wish there was some way I could have gone back to that family, and given us a glimpse of what was to come.  We tried to keep as upbeat and hopeful as we could, but I wouldn't have ever dreamed this would be where we were. 

Sure we still have appointments 5 days a week.  But this time they are therapy appointments, not doctor appointments.  We now see each of  our specialists every few months, with it probably working out to be an appointment every 3 weeks or so.  Ronan may be behind, but rather than talk about if he will meet milestones, we are talking about when he will hit them.  Like Paul always says, no one has ever asked him when he started to walk.  Looking back, I think I didn't realize how bad Ronan may have been feeling...  His personality has just blossomed, and his development has kicked into high gear.  It is clear how good he feels.

This reflection makes me incredibly hopeful for the year to come.  I cannot wait to see what Ronan will accomplish!