Sunday May 5, 2013 - Picture update

In addition to the first blog post describing the upcoming events at Mayo, I wanted to update photo's and video of Erin to share just who she has become.  She is an amazing little girl, full of life.  She is large and in charge at all times, 4 going on 44.

Grandma Betty, who passed away March 11, 2013

Murphy Moo Moo, who also passed away this year

She loves to cook

Erin's beloved Priscilla

Face paint at the club Halloween party - yikes!

Easter Sunday 2013

Sunday, May 5 2013

It has been a little more than three years since I last posted an update in Erin's blog.  This blog was started originally for the purpose of keeping family and friends up to date on Erin's condition when she was in the NICU at birth due to her heart defect and other medical issues.  In the NICU, cell phones are prohibited, but even if they weren't it would have taken all day just to call the number of people who wanted updates.  Thus the blog was born.  The more I wrote in it, I realized that it had another purpose selfishly for me.  It was cathartic to put down in words what we were feeling and dealing with.  I also realized that it would be an incredibly important journal for Erin should she ever want to look into this part of her life, and understand how far she has come.

While I have received friendly prodding over the past three years to update the blog, I haven't really had a desire to do so, and frankly hoped that I was forever done with it.  I just wanted Erin to be a normal, healthy little girl.  A girl who formerly had a heart issue and now was over it.  A girl who's parents didn't look at her every time she runs out of breath and wonder if this is the beginning of a serious incident.  Unfortunately, that was never in the cards as much as I tried to convince myself that it was possible.  And so here we are.

Erin has reached the point in life where at almost 5 years of age, her heart now needs significant medical intervention to continue to function and allow her a chance at a normal life.  On Tuesday, we fly to Mayo Clinic in Rochester Minnesota where Erin will have open heart surgery on Thursday morning.  The operation is difficult and risky, and involves essentially re-plumbing her heart in an altogether different manner.  The main procedure is called a Bi-directional Glenn.  At the same time, they will close the ASD hole in her heart, and look at the tricuspid valve to determine whether it can be repaired, replaced, or left alone.  Finally, they will also look at the heart wall itself, to see if it needs repair because the tissue has become so thin.

We are told that assuming a successful outcome, she will be in the ICU for 3 - 4 days, and then moved to a regular room for several days after that.  Altogether, we expect to be in Rochester for two weeks.  Luckily for us, since we are "sick" of perfect weather here in Scottsdale, the area received almost a foot of snow this week.

We chose Mayo Clinic after very careful thought and consideration.  Our cardiologist continues to be Dr. Jeff Gossett at what is now known as Lurie Children's in Chicago.  Jeff has done an amazing job with Erin, and she feels a strong bond with him that always culminates in a big hug as she says goodbye after one of their many visits.  Were it not for Jeff, Erin would have had the first operation within a few weeks of her birth, and obviously a very different outcome.  As he puts it, everyone has done their job and gotten her to where she is older, bigger, and stronger, and in a far better place for this type of operation.  It is a Rubik's Cube of emotions.  On one hand, we know that she has a grotesquely distorted heart, one that can't continue to support her as she grows.  On the other hand, she is normal in every way, and you would never know there is anything wrong with her by observing her in everyday life, other than her occasional breathlessness that comes with play.  She knows that she needs to take regular breaks that other kids don't, and it bothers her.  But to live with her, you tend to forget about the medical issues, except when they force their way into your consciousness and hammer you into reality. It's hard to describe, really.

Our three choices of hospitals came down to Lurie, Boston Children's affiliated with Harvard, and Mayo.  We have grown very close and fond of all of the people at Lurie, and Sheila and I both serve on boards for the hospital.  They are one of the world's leaders in heart transplants for children, and is exactly where we would be headed if Erin were a candidate for that procedure.  It would be incredibly convenient to our downtown Chicago home.  However, her condition is so rare and involved that we wanted only the very best in the world.  That happens to be Dr. Joseph Dearani at Mayo.  He has performed more of these operations than anyone else, and that is what caused us to choose Mayo Clinic.  He told me last August when we went for a visit that they have only seen 1,000 cases of Ebstein's.  I thought that sounded like a lot, but he assured me that number is insignificant for Mayo.  He then went on to say that out of those 1,000 cases, they have seen less than 25 like Erin's.  That is a sobering fact.

We were impressed with Dr. Dearani from the start.  We arrived at our 4 pm appointment at 5:30, having been held up by all of the tests that Erin underwent.  He made it completely clear to us that if we needed to stay until 10 pm asking questions, he was going to stay right there and continue answering them in a patient, caring manner.  Sheila has handled the burden of interfacing with Mayo and making all of the hospital arrangements, and we have been incredibly impressed with everything we have observed thus far.  We are hoping for a very good experience based on our current interactions.

I will try and update the blog as timely as possible.  As always, we thank all who take the time to read this for their caring and kindness.  It is incredibly helpful to Sheila and myself.

Update - January 29, 2010

In our backyard

The mountains behind our home

Elmo impersonator

Watching Sesame Street

Erin turned 19 months yesterday. As I think I have written before, it's hard to remember life before she burst onto the scene. Nothing new medically to write, other than the assorted colds that she seems to constantly have, or her first ear infection. True to form, you barely knew she didn't feel well, even though her ear must have been bothering her. She definitely has a very high pain threshold. Today at lunch, she fell in the gravel while playing in the park across the street, taking a little chunk out of her hand. Her reaction was more one of curiosity about her little wound, never complaining or crying.

The rate of growth in her vocabulary seems to be accelerating. She delights in using the words she knows, and continues to trot out a new one seemingly every day. She also seems to understand just about everything we say to her, and responds well.

We are enjoying our time in Scottsdale, where the weather has been mostly terrific. Erin loves going to the park across the street, where she is alternatively fascinated with the ceiling fan in the structure, sliding on the slides, or playing in the bushes. She loves to go up and down the rows of bushes that line the playground. It must seem like the deepest darkest jungle to her. Whenever a plane goes overhead (we are on the flight path for the Scottsdale airport, so we see a large number of private jets directly overhead on their approach), she immediately runs out into the open to point it out and call out "plane" over and over. She loves walking to the park with each of us holding a hand, swinging her between us. On nice days, we might visit the park 2 or three times during the day.

Another change is that she is growing more patient with downtime. Last night, she and I sat in the living room watching her beloved Sesame Street for at least 20 minutes, with her snuggled up against me eating her crackers the entire time. Tonight, she was good for 15 minutes lying snuggled on the bed while watching Sesame Street.

Erin is an affectionate, loving little girl who totally enjoys life. She loves to sit at lunch or dinner and waive and smile at every person who walks by our table. We recently went to dinner at Fleming's, and she was mystified that people would walk by our table and actually ignore her! The nerve.

2009 Year End Update

My favorite picture

January 3, in her new Elmo slippers!

Scottsdale in October.

Scottsdale in October

Christmas Day

Christmas Day

What else? Watching Elmo!

I just like this picture.

Buzzy Bee for Halloween

I have been very remiss in updating Erin's blog. Thanks to all of those who have gently "prodded" me to do so! I realized after going back and reading Erin's last blog entry that I am already forgetting some of her behaviors, and thus need to more regularly update this to create a record of things that we want to remember about her. Others have shared with me how quickly you can forget details of your child's development, so this blog becomes a way of remembering.

2009 was such a memorable year for our family that it is hard to find a place to start. Erin is growing into a little girl from a baby right before our eyes. She loves clothes, loves talking on the telephone, loves people, and tries hard to be happy 24/7.

From Erin's health standpoint, we continue to be thrilled with her progress. She continues to grow and has gone from the 25th percentile above the 50th. She shows little outward signs of her heart issues, which can often manifest themselves via sweating, turning blue, being out of breath, etc. Sheila occasionally notes that her lips are slightly blue after eating but I can't see it. We did have an incident a few weeks ago where Erin woke from her morning nap throwing up every 5 - 10 minutes. After an hour, Sheila took her to Children's ER, as this type of vomiting can be a sign of heart failure. Luckily, it was a minor bug that she was quickly over. As always, the staff at Children's was amazing. Erin was seen right away, and Dr. Jeff Gossett was there immediately to check on her heart.

Erin continues to absolutely hate going to the hospital for her checkups. She seems to immediately go into meltdown mode, resisting any attempts to take her blood pressure, oxygen sats, or any other diagnostic. We were worried that if this continued, she would ultimately have to be admitted and sedated to get an echo of her heart to monitor her progress. As luck would have it, we were able to finally get an updated echo under the strangest of circumstances.

By way of background, Sheila has finally returned to riding horses, a long-time love of hers that she had stopped after Christopher Reeve's accident many years ago. At the time, Sheila was jumping and decided that it didn't make sense to take that risk. Over the years, she has expressed an interest to get back into riding and this past summer she finally took the plunge, this time taking up dressage, a form of technical riding that is based on command of the horse to show off the horse's athletic abilities. Sometimes referred to as horse ballet, dressage does not include jumping and was thought to be far safer. On Tuesday of the week before Christmas, something spooked Sheila's horse as she rode in the arena where she trains, and the horse took off at full speed. My understanding is that riders are taught to run the horse into the wall to stop them when they get out of control, since the horse will stop rather than hit the wall. Sheila's horse saw it coming, and being far too strong for her, took off in a different direction, throwing her from the horse from a full gallop into the arena wall. Unfortunately, she hit a cement shelf about six feet off the ground and broke three ribs, a bone in her vertebrae, suffered a partially collapsed lung, and various other bruises and contusions. When I arrived at the Lutheran General ER, she was strapped to a back board with a neck brace on, the classic position for someone with a cervical spine injury. Luckily, that was not the case, and after three days in the ICU, she was able to come home, albeit in great pain. It scared the hell out of both of us, and was far too close a call.

The morning after Sheila's injury, we were slated to take her to Children's for a checkup and yet one more try for a much needed echo. Priscilla and I took her, and she had the usual meltdown with the nurses trying to do their standard evalutation. The echo technician came by to try, and I told her I didn't think it would work. She agreed to try, however, and surprisingly, was able to complete the echo with Erin lying on my chest the entire 45 minutes. I laid on the gurney, Erin laid on me, and we watched cartoons on the TV. It was a good echo, good in that there was no deterioration of her heart performance. When I arrived at the ICU and gave Sheila the news, it helped lift her spirits considerably.

Erin was mystified and somewhat upset when Sheila couldn't pick her up upon her release from the hospital. We were told that it might take weeks before she was able to handle Erin, meaning that I would need to be around every minute that Priscilla wasn't there to do such simple things as changing Erin, putting her in her highchair, or putting her to bed. In typical Sheila fashion, she was back to picking Erin up (albeit gingerlly) within a few days. Hard-headed and stubborn, for sure. :-)

As I write this, on January 3, Sheila remains in significant pain, but has a full range of movement and is even beginning to go on hikes. She was extremely lucky, as she could have easily been paralyzed or killed. It was a very stressful time for the entire family.

As for Erin's stroke, there is virtually no evidence that she ever had one. The Early Intervention folks who have been visiting her monthly since we brought her home have discontinued the visits a few months ago, telling us she is normal in every way. She walks like a champ, uses both hands and arms, and has full range of physical movement. In their last visit they put her development in a range from 16 to 33 months, which shows just how advanced physically she is. The only area that held her back was speech, in that she didn't have quite as many words in her vocabularly by comparison to how advanced physically she is. She has the Clary competive spirit, because since that visit she is learning what seems like a word a day. Her communication skills are advancing rapidly, allowing her to communicate her likes, dislikes, and wants more readily. What amazes us is when she comes up with a word that we don't think that she has ever heard, and uses it in context.

In her last blog update from August, Erin was just beginning to walk on her own. We were trying to figure out how long she had been walking this week, because it seems like she has always walked. She walks (or runs) everywhere. One of her greatest joys is being turned loose in public to run around. Whether it be the zoo, the airport, a restaurant, or our country club in Scottsdale, she loves to explore and roam around, staring at strangers without aplomb and smiling broadly at all who engage her. She is a favorite at the CC, and somewhat of a flirt with all of the staff. They bring her bread to take out on the lawn in back to feed the birds, an activity that she takes great joy in.

She has become a very good eater. The only thing we can't seem to accomplish is to get her to take regular milk. On occasion, she will take chocolate or strawberry milk, but not in large quantities. She absolutely will not take regular milk, so we have resorted to giving her her formula before bedtime. Other than that, she gets all of her nutrition from regular food.

To try and wean her off of formula and force her to drink milk, our pediatrician advised us to cut off all liquids except for milk, as a means of forcing her to take it. She proved to be my daughter, as she went 5 days without any liquid whatsoever. We were advised that this was in no way harmful for her, but after 5 days we had enough of the stress of worrying about her and gave her water, which she loves. Since then, she gets her milk via formula at night and the occasional flavored milk when we can convince her to drink it. The great difference from before is that now Erin happily takes her formula bottle, and occasionally requests it. In the past, readers of this blog will remember that getting Erin to take the bottle was a continual, highly stressful battle. She needed to be in a quiet room, distracted continuously by various toys. Compare that to now, where I was able to give her her nightly milk/formula sitting on the couch in my parents home, watching football surrounded by family on Thanksgiving night.


Her favorite word right now is "no." She says it both emphatically, and softly in the cutest little voice in an almost conversational mode. Sometimes it means no, and sometimes it means yes. Most of all, she loves having some control, and exercises it frequently.

Her vocabulary is growing daily. She constantly surprises us when she blurts out a new word that we have no idea that she knew. She talks constantly, trying to communicate her thoughts and needs. She lies in bed at night and in the morning talking to her self, seemingly practicing her new skills. In fact, I am listening to her right now as she goes through her morning routine of waking and playing in her crib. Right now, she is playing with her puppy that she sleeps with, a gift that was given to her during her ICU stay. She is talking to it and imitating it with various barking sounds.

She even has slang. Da-da has become Da. Ba-ba, her word for dog, as become Ba. My favorite sound is to hear Erin roaming through the house looking for me, calling out Da, Da over and over. We continue to have trouble getting her to say Mama, but last night for the first time she needed Sheila's attention in a store and called out Mama to get her to notice the dress that Erin wanted. Sheila was thrilled, and Erin got the dress.

In addition to speaking new words, her comprehension of what we are saying to her is growing even faster. She follows requests and understands what we are asking of her, though not always obeying. Like any child, she takes great joy in acting out her independence, and loves the feeling that she is getting away with something. You can see the sly little smile on her face during these times, expecting to get caught but enjoying every second that she can milk out of it.

Erin has a full range of animal sounds that she can do on command, imitating a duck, a vicious animal like a lion, a dog, a cat, a pig, and a sheep. She seems to love animals, especially dogs. Seeing a dog, whether it is live or in a book results in a string of emphatic exclamations of "baba." We took her to the mall's puppy store a few days ago, and she was in heaven watching the puppies.

No surprise, Erin takes great interest and pride in her clothes. She is picky about what she wears, even going so far the other night as to go to wiggle out of my arms during our bedtime book reading, go to her dresser, pull out a new (non-matching) pair of pajama bottoms, and demand that I change her existing bottoms. She checks out the shoes of virtually everyone she meets, and loves going through Sheila's shoe collection and pulling various shoes that she wants Sheila to put on. A favorite activity is for one of us to take her into her closet and show her each of her outfits, where she oohs and aahs over favorites, pans others with a quick no, and takes great delight in the entire process. She loves shopping, and runs from rack to rack looking at clothes like a seasoned shopper. Obvious trouble brewing for me, for sure.

Current routine involves waking up around 7:30 each day. I usually get her up, we all play for awhile, and then she has breakfast. She plays for a few hours, and then usually takes a nap for an hour or so in the am. Lunch is around noon, where she usually eats a pretty good amount of food. She is a fairly adventurous eater, and needs variety to keep from getting bored with her food. Pasta with red sauce is her current favorite, followed by whatever someone else is eating.

After lunch, more playing until an afternoon nap, followed by more playing, dinner, and then the bedtime process which usually begins around 7:30 in order to get her down by 8. We try to break up the day with various excursions and field trips, which she loves. She is enrolled in Bubbles Academy, which is a once a week hour long playtime for toddlers in a giant padded room filled with toys and stuffed items to climb on. It is great fun to take her (I am the only Dad, surprisingly) and watch her delight at all of the activities that they put the children through.

Sheila and I take turns putting her to bed, and we both enjoy the one-on-one time we get with Erin. After getting a big kiss and putting Erin in her crib, I take my time straightening up the room and picking up the used formula containers and medicine dispenser (she is still on viagra three times per day). When I am done, I lean over her crib one more time and am always rewarded with the biggest, sweetest smile I have ever seen. It melts me every time, and is the best moment of my day. She is so happy at those moments, and so are we. She continues to sleep through the night without incident. Since she began sleeping all night, we have only had to go in there on a handful of occasions. Recently, I had to make two trips as she woke up crying hard around midnight. I have no idea what caused this, but both times I sat and rocked her in her chair until she pointed at the crib, letting me know she wanted to go back to bed. I got the big smile both times, so it was totally worth getting up for. She was fine the balance of the night.

Other favorite activities continue to involve helping out. She loves to get off her changing table at night and gather up her clothes to put them in her clothes hamper. She gathers each article, walks to her closet with a huge smile, and emphatically puts them in her hamper with a little war cry for each item. She loves helping with laundry, taking clothes from the washer and putting them in the dryer. The same with unloading the dish washers. She just likes to be involved and feel like she is contributing. We hope this behavior continues for a good long while.

We are spending a good part of the winter this year in Scottsdale, far longer than we ever have. Our street is a boulevard divided by a wide grassy park, with playground equipment at one end. With so few homes in our development yet, it is almost like our own private park, other than a few other children that we occasionally see. Erin loves to run and play on the grass, and enjoys taking walks exploring the neighborhood. She is endlessly fascinated by almost anything she encounters, including a cactus that left her with 30 or so tiny needles in her little hands. I don't think she will do that again.

She has always had a fascination with the telephone, and loves nothing more than to play with the cordless phone or a cell phone. She has now taken that activity to grabbing the phone and demanding that we dial someone for her to talk to. Both sets of grandparents are regular recipients of Erin calls, where she babbles endlessly into the phone. Every once in awhile, she breaks into a loud laugh as if she has been told something hilarious. At times, she lies on the bed, feet crossed talking into the phone like an teenager might. A harbinger of things to come, no doubt.

Another favorite activity that is demanded daily is a good dose of Sesame Street and Elmo, usually watched on the computer. In the morning, Erin runs into my office, pounds the desk chair, and chants "Mo...Mo", her way of saying Elmo. She loves anything to do with the Muppet characters, including clothing or dolls. Santa Buddies was a big hit at Christmas time, featuring a pack of Golden Retriever puppies who save Christmas. I probably saw the thing 30 times. Luckily, it was cute and she loved it.

Most of all, Erin loves to be around people. We are lucky that Sheila's family is able to spend so much time with her. She loves Grandma and Grandpa Casserly, and greatly enjoys visits from her aunt's and cousins. We were able to get to Macomb to see my parents a few times, and she had a ball roaming around a different house. I would be remiss if I didn't mention how lucky we are to have found Erin's nanny Priscilla. They have a tremendous bond, and Priscilla is absolutely wonderful with Erin. We couldn't be luckier to have her as part of our family.

In addition to the photo's and video files (shown below) included with this update, I have uploaded more to my .Mac website, which can be found at http://gallery.me.com/jclary60015/100079. Feel free to peruse the photo's, or download any that you want. Incidentally, several people have mentioned that they check regularly to see if there is an update. You can subscribe to the blog site to get notification of whenever there is an update.

Thank you again for your interest in Erin and for following this blog. We look forward to a wonderful 2010, and wish everyone the same.