Walk This Way

It was a big day at the pool. Ella walked across the length of the shallow end for the first time! Since we began aqua therapy, Pnut has been limited mostly to the area near the stairs. In fact, when she first started with Linda she couldn't even sit on the second step without the water being too deep. She has grown leaps and bounds recently, however (full disclosure) Linda also helped make this possible. Linda asked the pool people to drain some water....and they did! Today when we arrived...the pool had 5-6 inches less water.


Ella walking in the shallow end of
the pool for the first time!

 The now minus-two-foot shallow end is still up to Ella's chin, but she managed to walk the length just like the "big kids". She seemed pretty pleased with herself. Of course, Jason and I were thrilled! It's just another big accomplishment for Pnut. The expanded pool territory also gives Linda a chance to work on new things with Ella. I can't wait to see what she thinks of next...though I'm not sure we can top draining the pool :-) We are very grateful for Linda and her persistence, dedication, and love for Ella!

Summer Scorcher

We survived the summer scorcher! The July heat wave set records all over the country. It was 103 degrees in Boston Friday...the hottest day in 85 years, wowza! Some day it will be fun to tell Pnut how she spent these dog days of summer 2011. We always say she is a weather nerd! 

Ella "jumping" off the pool stairs with
her new bubble.


Temps in the 100's made for the perfect excuse to stay poolside for the weekend. Our little fish Ella loved every minute of it. She packed up and shipped off to Woburn on Thursday to hang out for a few days early while Jason and I finished up a busy work week (he was at Princeton for the week, I was sneezing my way through a horse allergy and opening day at the Saratoga race track!)

It was so hot outside, that it was pool or bust at the Nan's house all day Friday and Saturday. She is so comfortable in the water and would stay in there all day if we let her. We decided to try a new swim bubble this weekend. It allows her arms to be free and keeps her head out of the water. I wasn't sure how she would do with the new freedom in the water. She is used to bobbing around in her float or being held. I probably shouldn't have worried...she took to the bubble like she had been wearing it for years. She was kicking her feet and had a blast "jumping" off the stairs. I think we spent at least half the day in the pool! By the time I had her wrapped in her towel, she could barely keep her eyes open.


My tired little fish after hours in the pool.

All the pool fun was made even sweeter since it was shared with my niece Lucy. The girls are 17 months apart and are (usually) pretty cute together. It is a lot of fun to see them playing
in the water. They both looked too cute for words in there bathing suits and summer hats
(courtesy of Sophie & Me) The girls seem to motivate each other. Lucy is crawling now and the
baby-on-the-go has Ella moving more too. Both girls will do whatever it takes to get to the
Nan too. That's when things get competitive...haha! It's wonderful that they are able to spend
time together. I hope they grow into good friends :-)

Ella and Lucy July 23, 2011.

We're looking forward to more pool time, bubbles and good fun in the sun. Vacation is just around the corner. We're off to Lake Michigan in two weeks. I can't wait to see how Ella does at the beach!

Ice, Ice Baby



Ella and my mom watching me skate.

 Ella has spent her fair share of time in an ice rink over the past two years. Her first trip was when she was just two months old to watch the first practice for the first team Jason coached here in New York. Until now, all of her rink experiences have been hockey related. Last night she got a taste of my sport, figure skating. I was asked to take part in a media challenge with a local synchro team. My mom and Ella came along to watch. I figured my mom would spend most of her time chasing Ella around the lobby...boy was I wrong!



Ella "skating" with Jason when she was
about 4 months old.

 It is hard to explain the look on her face as she watched me skate around the rink. She was all smiles and I could hear her laughing and cheering. She stood at the glass for the entire hour...watching in amazement. When the learn to skate kids took the ice at the end of my session she was pointing to their skates. I think I have a future figure skater :-)

If she loves to skate, that would be great. If she decides the rink is not for her, that is just fine too. I can only hope Ella finds something that brings her as much joy as skating did for me. I sadly haven't been on the ice for a long time. Yesterday was lots of fun and was made even better since I was able to share the experience with my daughter and my mother. My mom says Ella's excitement reminded her of another little girl she knew. It was my mom who would bring me to public skating sessions when I was younger. She wanted to get us out of the house and the rink was close by. I remember the excitement I had every time she said we were going skating. I BEGGED her to skate more and take private lessons. My parents said yes and the rest was history!

Now the search is on for teeny tiny skates for this winter. Jason and I are looking forward to sharing the ice with Ella. She's still pretty young so I'm sure it will be a lot of effort for a short spin around the rink. I have no doubt it will be worth it! Hard to believe that a few months ago we were hoping she would walk and now we are thinking about skating. Time flies!

Movin' On Up....

Caught red handed climbing the stairs.



All my fun is gone...Mom and Dad were afraid I might jump out!

Our quiet, cautious little girl has become a daring little monkey in the last week. She has discovered the fine art of climbing. She climbs the stairs, she tries to climb up my leg, she climbs on poor Tucker, and this morning we caught her climbing out of her crib! She's now just one step away from the toddler bed....how did that happen?! Jason lowered her crib to #3 tonight...the lowest it can go. 



This was Ella's first day at home...so peaceful in her basket.

 It's better than hearing a thud during the next nap time, but I couldn't help but think about how fast she is growing up. I remember her sleeping so peacefully in her moses basket two summers ago. I also remember being so frustrated that she seemed content to sit and play last summer, rather than crawl and explore. It's just another reminder that we are on Ella's timeline.

 I love her new adventurous side. It keeps us on our toes, and we wouldn't have it any other way. Bring on the wild child...yes that's right, I want to spend the afternoons chasing her up the stairs, running across the playground, and moving all my picture frames, candles and vases above her little arms reach. I don't think you'll hear any complaints from Jason or me :-)

It seems like our life is moving on up as Ella grows up. Everything is slowly being put out of reach (for safety), all while Ella reaches some very important milestones. Every day is more exciting than the next. It is so fun to see the world through the eyes of a two year old..I can only imagine how I will feel when she reaches Kindergarten or college...YIKES! At least we have time for all that. For now I'll just cherish the endless trips up the stairs !

Wide Eyed Wonder

What a long day...but everything went really well with Ella's ear tube surgery! She went to bed happy and hopefully hearing a lot better.


All smiles playing with Abbie before going in for surgery.

We arrived at St. Peter's hospital bright and early at 6am. The surgery is typically done at an outpatient center, but our doctors (ENT and Endocrinologist) agreed that Ella should be treated at the hospital. She had to have a hydrocortisone shot prior to the surgery. The shot helps her body fight the stress of surgery. It's a precaution we must take due to her hypopititarism. Once the shot was done, she was off to the OR and Jason and I were off to the waiting room. Thankfully the surgery was quick and within 30 minutes we were back with Pnut! The doctor said everything went really well. She was able to drain quite a bit of fluid from both ears. Ella's hearing should improve significantly, she shouldn't have problems with ear infections, and her balance will likely improve.


Sound a sleep on the way home from the hospital.



After a nice morning nap (she was fast asleep before we got in the car), Ella woke up to a whole new world. She was very happy in her crib and well rested when I came in to get her. Throughout the day, she would snap her head around when she heard a new sound. We were sitting outside and a helicopter flew over us....her face was priceless. She looked at me with her big blue eyes as wide and wondrous as I have ever seen.

Those big eyes make my heart melt every day, but today was even better knowing that she was finally feeling better. She is hearing things better already! I was filled with so many emotions all day...anxious over the surgery, happy that everything went well, compassionate throughout the morning for my little patient, and overjoyed by the afternoon at her "new" awareness. We took Tucker for a long walk, decorated our walkway with sidewalk chalk, and of course shared an ice cream. It was capped off by her time with Jason when he got home from work. They read The Poky Little Puppy everyday and Jason couldn't wait to read their book this time. She could always hear us, but it was like being underwater. There were smiles all around and it was truly like she was hearing the words for the first time (no lie, they read this book EVERY day!) It's such a simple thing, but watching them sit together and read the book is one of those moments you want to bottle up and save forever. I am convinced she will be reciting all the words in no time.


Jason and Ella reading The Poky Little Puppy



Baby Steps

Ella's baby steps are a huge milestone. We have waited so long and worked really hard to get to this point. I cried that first night she walked across the living room. They were tears of joy, and maybe a little relief too. I was so proud of Ella. In some crazy way, I think her walking finally gave ME more strength and confidence. I think this was when I realized, wow we are working so hard and it's paying off. Now I am taking my own baby steps, not just with writing this blog, but getting involved in another incredibly important organization as well.

Hosting the March For Babies Kick Off Breakfast in Albany.


Every so often I am asked to speak at an event, attend a parade or visit a school. It comes with the territory when you are a local tv reporter. It is a fun part of the job....getting out and meeting people in the community. Earlier this year I was asked to host the March of Dimes breakfast. It's a kick-off event for the annual March for Babies. I was honored to take part and excited about becoming involved with such a wonderful organization. The March of Dimes mission is to make sure ALL babies are born healthy. http://www.marchofdimes.com/

During Ella's time in the NICU, we learned a lot about the March Of Dimes. You are flooded with information and paperwork at the hospital, but the March of Dimes helps families sort through so many different things.

I was grateful for the information and support while we were in the hospital, but I don't think I truly understood how important the work of the foundation is until I was invited to the breakfast. I had the privilege of hearing from people who have come back year after year to raise thousands of dollars. Some had heartbreaking stories about losing a baby, yet they still wanted to make a difference -- use their grief to help another family. Other people had very happy stories, healthy babies and great successes thanks to research money raised. I knew then that I wanted to do more. I guess the local organizers and I were on the same page! They asked me to be a spokesperson for the March of Dimes of Northeast New York. This fall I will begin attending events and meetings to speak to groups about the work of the March Of Dimes and explain why continued support is so critical. I have been asked to share my own story. I am excited and nervous all at the same time. I know the speaking part will be natural for me, but sharing my personal experiences may prove a little more challenging....baby steps For me too I guess :)

Kuckerrrrr!



Poor Tucker...he is always so tolerant of Ella!

 For 2 days now all Ella keeps saying is "KUCKERRRR"....it took a bit to figure it out, but now we are pretty sure she is calling the dog (who's name is Tucker!) She shouts KUCKERRRR (drawing out the RRRR) and then butt scoots her way over to him. She loves her dog. She is always trying to kiss him and pet him. She tries to lay on top of him and just a few days ago I caught her sitting on his belly bouncing up and down. Tucker is such a good sport and takes this abuse in stride even though inside Jason and I are pretty sure he hates life!

Ella's new pet name for the pup is pretty cute. I am sure it could be worse given the many different letter she could replace the "T" in Tucker with. It's also pretty significant that Ella is calling for him. This is probably the first time she is using words to get your attention. She says "momma" and "dadda" and will greet you with "hi!" when she sees you, but her speech has been delayed and the words she does say sometimes come out sounding not exactly how they should. Sure this is pretty typical of a toddler to not always repeat things perfectly, but our speech therapist wanted to have Ella's hearing checked out anyway. It's pretty standard to have a hearing test when a child is receiving speech therapy services. I am so glad we took Michelle's advice.

Ella's hearing test came back a little below normal. We met with an ENT to try and find out why. She has only had one ear infection in her 2 years and we know she can hear us (most of the time). It turns out Ella has fluid in her ears that won't drain. The doctor suspects what Ella hears sounds like what we would hear if we were underwater. It's usually more common with kids who have chronic ear infections, but not always. The best news is that it is treatable. Ella is scheduled to have tubes put in her ears on Thursday. It's a relatively routine procedure. The doctor says it should take about 10-15 minutes and the results are pretty instant. She told us that in most cases kids are already hearing better before they even leave the hospital.


Can you hear me now? Ella loves
to pretend to talk on the phone.

Of course there is always a level of anxiety when your child has to have surgery or undergo a medical procedure. Jason and I have been through a few stressful tests and events at this point, and it doesn't ever get easier. However we are so optimistic and excited for Ella to be able to hear us clearly. We can only imagine (and maybe a little nervous) about what will come out of her mouth. Maybe Tucker will actually sound like Tucker...but even if it doesn't, we can live with KUCKERRRR!

That's What Friends Are For

I have said over and over that Jason and I would not be where we are today if it weren't for all the love and support of our family and friends. It's something we never take for granted and appreciate immensely. It's the pep talk from mom, the smiling faces on Skype and that long phone conversation with a best friend that always seem to pick us up when we've had a bad day.



Kristin with a very little Ella and Addison
during a visit to New York.

 It was during a phone chat with one of my best friends Kristin this week that the subject of this blog came up. She mentioned she had read it and we talked about how I finally made the decision to begin writing. Kristin is a pediatric PT and has fielded more than a few questions from Jason and I over the past two years. Even at our "craziest" moments, she is able to talk us off the ledge and give us the reassurance that Ella is doing great. She told me about an essay she had once read. I googled "Welcome to Holland"....and instantly wanted to share this beautiful writing. It was written in 1987 by Emily Pearl Kingsley.

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thanks for sharing this Kristin....and thanks for all the love, support, and advice. I hope that someday Ella has friends like you to celebrate the good times and to lean on when times are tough :-) xoxo

Catching Up!

"Her progress and growth is remarkable."....that's what Ella's endocrinologist said to us today and it was music to our ears :-)


7/5/11 - Ella on the scale.
9.5 kg translates to 21 lbs!

After just three months on growth hormone Ella has gained 4 lbs and grown 2.4 inches!!! She now tips the scales at 21lbs and is 29 inches tall. Jason and I couldn't be more excited. We had a great check up with the endocrinologist. She feels her "catch-up" growth is right on target and at a pace that Ella is handling very well.


This is a shot of the device they use to measure Ella's height.
It's important to get an accurate measurement.



 All this growing has had a tremendous impact. Ella is a lot more active. In 3 months she has started walking, talking and communicating more, she is more interested in her toys, she sleeps better, and she actually has an appetite. She wouldn't sit still during her exam...and we all had a good laugh about what a difference three months makes.

This is just the beginning. The doctor has told us that it will take about 6 months to see the full effects. We will have another check-up in October. We will also have the results of her blood work in about a week. The doctor will then be able to determine if her dosage stays the same. It's a careful balance, but so far the hormone replacement is working. Big cheers for Pnut!

Happy 4th of July!



Ella and Jason loving the balloon ride at
Hoffman's Playland

 Ella is an adrenaline junkie. She loves the rush of speed. Hanging upside down insights belly laughs in an instant. The faster she swings at the playground, the bigger the smile. You would think she was fearless...that is until the National Anthem plays at a hockey game (or even on tv for that matter). You know when Ella is in the house, she's the one wailing at the top of her lungs. Jason knows instantly when we are at a game, as soon as the anthem starts, so does Pnut! It's a blood curdling, scared to death scream. You can usually hear her from anywhere in the building. I've tried everything, earmuffs, cuddling her close, singing along, sitting in the lobby....once she starts, the screams don't end until the song does. I am usually sitting with the same crowd of people at games. When "Oh say can you see..." begins, heads turn to Ella. It's become a joke among those closest to us. Why does she hate the National Anthem?? I've resorted to skipping the start of games in an effort to minimize the meltdowns.



Ella and Jason singing the Canadian Anthem
during the Stanley Cup Finals

 You could argue that she doesn't like the loud noise, but the Canadian anthem is a "happy" song. No tears when "Oh Canada" blasts through the arena. She sang along with Jason every night of the Stanley Cup finals (decked out in Canucks gear of course), yet when it was America's turn to salute, Ella's face turned from joy to horror. I guess those Canadian roots run deep :-)

Here's to hoping you have a Happy 4th of July! I am sure we will have a nice day...as long as the anthem doesn't play!

Nothing But The Best...

We started Early Intervention with Ella when she was three months old. We were referred to the program because of Ella's time in the NICU and her genetic diagnosis. Early Intervention is by far one of the best services that is offered to families in New York State. I have seen first hand the positive effects of one on one therapy in a home based setting.

We have three amazing therapists that have become a big part of our lives. We see them several times a week (most times more than we see our own families). Jen, Michelle and Linda help Ella with so many things, and they also do a great deal to keep Jason and I sane!


This is Ella when she was about 9 months old, working hard with Jen
on the medicine ball. Don't let the smile fool you!

Jen is Ella's physical therapist. She comes to our house once a week to help Ella get stronger. She works on things like walking, sitting, standing, and balance. Jen has the patience of a saint. Ella isn't always happy about working so hard, but she muscles through...with Jen always there to push her. Jen also helps Jason and I with techniques we can follow through with every day. Jen is a great teacher and we often say we would be lost without her guidance.

Ella and Linda at one of her first pool sessions. So funny to look
back at an old photo and see how much Pnut has grown!


Linda is Ella's pool physical therapist. She sees Ella twice a week at a therapy pool not far from our home. We started aqua therapy when Ella was about 8 months old. She LOVES the water. We have seen great progress too. She is much stronger and a lot more confident. We usually see Ella's progress in the pool translate into accomplishments on land a few weeks later. For example, Ella was walking independently in the pool for several weeks and then eventually had the confidence to give it a try in our living room! Linda is great with Ella and is always looking for new techniques to give Ella the best treatment.

Ella working on an art project with Michelle.
 Michelle always has a new activity to help motivate
Ella to make new sounds.

Michelle is Ella's speech therapist. She comes to our house twice a week to work on a range of things from talking of course, to sign language, and feeding. Michelle has given us so many great tips and suggestions. Jason and I have learned to use sign language to compliment speech. Ella uses several signs regularly. She is also starting to talk a lot more. It's amazing. Michelle is so much fun and seems to always have answers to our questions. She gets so excited when Ella has a new word or sound. She works Jason and I hard too...we frequently get homework!

Jen, Linda and Michelle are the best of the best in our eyes. We have so much respect and admiration for what they have done not only for Ella, but for all of us. I like my job, but these three women LOVE their jobs. It's not always easy to deal with a toddler (and one who is stubborn at times), but they never give up or show frustration. Although Early Intervention is only for children up to age three...I have a feeling we will have long lasting relationships with our therapists!

Hypopitui...what??

Ella helping get ready for her nightly shot.

Hypopituitarism....it's a mouthful, but it was a big piece of the puzzle when it comes to Ella. She was diagnosed in December with hypopituitarism. It's when a person's pituitary gland (the nerve center for our hormones) doesn't work properly. In Ella's case, her pituitary is very small. She doesn't produce enough thyroid or growth hormone. It sounds like a drastic condition, but it is actually very treatable! We are able to treat her with hormone replacement therapy and the results have been fantastic. She takes synthroid every morning with breakfast to regulate her thyroid. She also has to have a shot of growth hormone every night. Jason and I have quickly become mini-medical experts. We mix her nutropin (growth hormone) every other week. We also prepare the medication and administer her shots EVERY night. She is a trooper. In the 3 months that we have been poking her, she has never cried. Sometimes she even sleeps through her shots. It's a testament to how strong this kid really is. She knows the routine and will imitate us as we use hand sanitizer to prep for the shots, she's even started "helping" clean the injection site with the alcohol swabs.

It's really amazing that we are even at this point! We first noticed Ella wasn't growing around her first birthday. She wasn't gaining weight as quickly as our pediatrician would have hoped to see. She sent us for blood work. The first round of tests came back normal, but Jason and I knew something wasn't right. I guess it's just that gut instinct you have as parents. We pushed for more answers. We had already seen so many specialists in the area for a number of different things, always walking away with a clean bill of health. Believe me...we were thrilled that our child is doing so well, but she wasn't growing and that was concerning. Our doctor finally referred us to a pediatric endocrinologist. Our first visit to endocrinology was not good! It was located in the same office as the geneticist (a nightmare experience that will have to be saved for another post). The endocrinologist took down Ella's history and as soon as she heard the chromosome 18 diagnosis, she walked across the hall for a consultation. I remember looking at Jason and we both rolled our eyes. While Ella has this "genetic diagnosis", we also haven't seen any of the grim conditions associated with it. We just wanted the doctor to treat Ella for Ella and not the lengthy and rare diagnosis on paper. The doctors returned from her trip to the genetics office only to tell us that Ella's growth problems were a result of the genetic issues...and that options like growth hormone "probably wouldn't help". We pushed hard for more blood work and xrays.

Less than a week later...the doctor called back. I could tell by the tone in her voice during that phone call that she was taking the concerns that Jason and I had about Ella's growth serious this time. She needed to see us for another visit. Ella's growth hormone levels and thyroid levels were very, very low and she would need to be treated. Jason and I felt vindicated. While no parent ever wants to hear that their child has a health issue, we also stood our ground with the doctor and finally had an answer to our little Pnut's small size.

Ella pushing her babies around the house!

I am more than happy to report that hormone replacement therapy has been a game changer for Ella and for our entire family. She is growing and developing at light speed. It seems like every day she is getting stronger and doing new things. She took her first solo steps the night before her second birthday. She is into everything in our house. She loves to play with her dolls and crayons. She has a MAJOR 2 year old attitude when she doesn't get her way. She has grown several inches and is tipping the scales at 19 pounds. I think she has a new tooth every day and it's a good thing since her appetite is growing too. July 1st marks three months since we started the shots. We have a follow up with endocrinology Tuesday. It's a big day...we'll see exactly how much she has grown and gained!

The Ride Of Our Lives...

When you have a child, you know your life is going to change! I never expected I would be where I am today...and I wouldn't trade it for anything. I am entering the blogosphere at the encouragement of my sister. She says "our story" may be good for other families navigating the world my husband Jason and I were thrown into two years ago. I know, I know...I'm burying the lead...the opposite of all my journalistic instincts, but this story is different than the news that drags me into work at 3:30 am every morning. This is my life.

On June 15, 2009, Ella made her dramatic entrance into this world. We should have known right away that Ella was going to do things her way...and Jason and I were along for the ride of our lives. Our little Pnut was a few weeks early and tipped the scales at just 5 lbs. She had thick black hair and a tiny, tiny cry. It was love at first sight. She was sent up to the NICU for a closer check and a little help eating. Stressful: yes, but a minor bump in the road. When Ella was one week old, that bump became what seemed like a mountain (at the time).

Ella was diagnosed with a chromosome 18 abnormality. The genetics report lists it as mosaicism for monosomy 18p and monosomy for the short arm of 18 as well as trisomy for the long arm of chromosome 18. I remember the day the genetic councilor coldly came into the room and told us the many grim and hopeless statistics. She also said this was very,very rare...in fact, the doctors couldn't find any other cases containing this type of genetic makeup. I googled chromosome 18 issues (scary stuff). I cried and wondered what the future held. Then I put that report aside, buried it in the mounds of hospital paperwork and focused on my baby and doing everything I could for her. Ella went through every test, scan and screening a newborn could go through, brain ultrasounds, spine X-rays, eco-cardigrams, a check of her kidneys, eyes, ears...the list goes on forever. Everything checked out great!

Today Ella is a precocious two year old who continues to amaze us every day. We have learned so much since her birth. Now my hope is that sharing our experiences will help other families facing similar situations. It hasn't always been easy, but through persistence, we have gotten answers. The grim outlook we were given that day in the NICU is NOT the little girl who makes us laugh every day. Ella does not resemble any of the characteristics of chromosome 18. She is happy, healthy and thriving. We have found what we feel is the best situation for Ella's growth and development. We have a great team of doctors and therapists, and the amazing support of family and friends. Now I want to record our journey....for the love of Pnut!