Lessons learned....

Ella's first day of preschool
September 5, 2012

School, swimming, and now ballet! Ella has a busy schedule for a three year old. Preschool is going very well. She gets great reports from her teachers and therapists. She is enrolled in a full day preschool program. She also gets all of her therapies at school...PT, speech, OT, and even music therapy. It's been an adjustment for me more than her! I am so used to having the therapists in my home and being an active participant in each session, so to not see her doing PT or hear her practicing with the speech therapist is hard. I have been getting lots of reports from everyone and so far so good. Just yesterday her occupational therapist told me that she sees a big change in Ella's confidence in only a week. I was so happy to hear that she holds her own in the classroom and is very involved with every activity.

While Ella is doing a lot of learning and growing, I am learning (or being reminded at least) of some important lessons myself. I learned once again this week to NEVER underestimate my daughter.
I learned that a few extra/missing/mixed up chromosomes do not define Ella.

First ballet class!
September 13, 2012

I was so excited to bring Ella to her first dance class. She looked so cute marching right into the studio to sit with all the other little girls dressed in pink. I was also a nervous wreck....worried that she wouldn't be able to keep up or that the other kids/parents might question Ella. It's an insecurity that I have every so often. This was the first time I was putting her in a group with "typical" kids. Most of her activities until now have been through early intervention and the toddler group special ed program. I know that she is not as coordinated as many kids her age and her speech is not as good yet, but I also know how far she has come. I am so proud to even be able to take her to this class. The smile on her face when she was with the other kids was very reassuring. Ella has no idea that she can't run as fast or doesn't have the strength to jump as high as these other kids. She has no idea what "low tone" is, but it was clear to me when she was in the group that she fit right in.

That's Ella standing up...getting ready for her turn
to tumble!

I still cried though. I cried enough to send me to the bathroom so that the other parents wouldn't see me. I am even a bit embarrassed to admit it. I wasn't crying because I was upset. I think they were a mixed bag of tears. I was proud to watch my daughter at her very first dance class and sad at the same time that I would ever doubt that she would be able to handle it. The trigger was when the teacher asked her what her name was, she spoke up and said Ella. The teacher didn't quite understand her though and thought she said Anna. Ella said her name a second time and the teacher looked up at me. I quietly corrected her and said Ella. It is such a silly thing to get upset about.

There were other little girls that were shy and didn't want to say their name. Some even left the room crying. Not Ella. She made it through the entire 45 minute class....she tumbled, twirled and tapped. She followed along with the teachers and seemed to have a great time. I couldn't help but be emotional. I think the tears were my way of relief from all the built up anxiety I had. Clearly it was a lot of worry for nothing! I don't care that the teacher didn't understand her. She said her name (and pretty clearly too, I thought!) All I want for my daughter is absolute happiness and to never be looked at as different.

On this day, Ella didn't look different at all. She looked beautiful, confident and happy!

Forever Grateful

Today is a big day in our house. With mixed emotions, we are saying goodbye to our wonderful early intervention therapists. Ella is now a graduate of the program...a proud and successful one at that!

It was just about three years ago that I received that first phone call from Jamie, our amazing service coordinator. She outlined the program and assured me that she would be working with us every step of the way on this crazy journey. Jamie did not disappoint and went above and beyond her job to make sure that our little girl had the best care. At one of our final meetings recently, she recalled how Jason and I looked as if we were in shock the first time she met us. We were. In fact, I am not sure shock is even the right word. Our worlds were turned upside down when we received Ella's diagnosis. This was not how our first experience as parents was supposed to be. I still tear up when I think of that day in the NICU and the grim statistics the genetic councilor rattled off to us. By the time we met Jamie a few weeks later, I was still numb. She gathered an incredible team for us and helped us design a plan that would benefit Ella.

PT at the park with Jen this summer.

Jen, our PT was the first therapist we met. She has always had the most incredible patience with Ella. There were days when the entire session would consist of screaming. More recently, she has handled our stubborn toddler like a pro. She helped Ella reach so many important milestones, rolling, sitting, standing, walking, running, jumping....all the things, at one time or another I wondered if she would ever do. I am going to miss her visits twice a week, but I am thrilled that she will still be able to check in on Ella at school.

Michelle joined our team about a year into our EI journey. She is Ella's speech therapist and has been a tremendous resource to Jason and me. She helped us navigate through Ella's ear issues. She taught us all sign language (the basics at least). We learned how complex speech really is and we have a solid foundation for Ella. She is getting more words every day. Michelle pours her heart into her work and it shows. She loves Ella so much. We will truly miss seeing her....thankfully Facebook will keep us connected!

While we won't be saying "goodbye" to Linda, Ella's pool PT, I would be remiss not to mention her. She has been a huge part of Ella's physical development. Every milestone she met, she accomplished in the pool first. Linda's stretching and pool exercises complimented everything Jen was doing on land. We are thrilled that Ella will continue in the pool as part of her Preschool program. Not only does she love the water, she loves to see Linda every week. It's a challenge to even make her wait her turn to get in the pool.

The last member we added to our team was Jessica, Ella's special educator. We met Jess last fall when Ella started at Unity. She has helped Ella become a little social butterfly. She patiently spent three mornings a week "hanging out" with Pnut, helping her learn her colors, numbers, shapes, songs, etc. Like Jen, I am sure there were some days that seemed impossible when Ella was in a mood, but she always stayed positive and gave Ella a great foundation to take into preschool.

I have tears in my eyes as we get ready to move on to our next adventure, but they are happy tears. These women have all played such a huge part in Ella's life as well as Jason and mine. They helped make my daughter the awesome little girl she is today. I can never thank them enough, but I vow to be a strong advocate for Early Intervention. It is the least I can do to show my sincere gratitude! While Ella may not remember this time, she will always know that she had nothing but the best :-)

Give It A Shot

For more than a year now, Ella has been getting daily shots of growth hormone because of her hypopituitarism. Here's a link to a blog about the condition, hypopitui...what?

The growth hormone has had a tremendous impact on her life. She is growing at leaps and bounds and has gained so much strength. The shots are something she will have to continue for the rest of her life in order to grow normally. She will even require the injections into adulthood to help with her metabolism, etc.

She has the routine down pat. For the most part, she handles the shots very well. There have been plenty of nights when she actually sleeps right through the quick stick. Of course, she has nights when she knows it's coming and just isn't in the mood (luckily it's a rare occurrence). She has been particularly curious lately, so I have made an extra effort to keep her as involved as possible. At 3 years old, she now helps give herself her own shot! I was shocked to see her do it the first time I offered! I still have to do all the measuring and prep work. I will actually stick her as well and then she presses down the plunger in the needle to actually give the injection.

She's a pretty amazing little girl (but of course we already knew that!). I still cringe to give her the shot every night and I could NEVER give myself a shot. Way to go Ella...you continue to surprise us every day!

Best Summer Ever!

Ella and Avery celebrating the 4th of July!

I can't believe we are more than half way through July...and I am just getting around to a new blog! It's all for good reason, because I have been busy having the best summer ever! Words can not describe how much I adore being home and spending every day with my girls. It is such a special time for me and I am determined to enjoy every single moment. I can't imagine loving anyone or anything in the world as much as I do my daughters. Tomorrow will mark eight weeks since Avery was born. It has been the FASTEST and HAPPIEST eight weeks of my life.

Enjoying some pool time with Pa

We have spent our time going to the pool, the playground, taking long walks, checking out the farmers markets, reading, singing and just having something fun to do every day. Ella is still going to school three mornings a week. It is good to keep her in her routine, but I can't wait for the clock to strike 11am and I can pick her up! Since she is still going to school, I have had a nice opportunity to sneak in a little early and see her in action with her teachers and friends. I am so proud of her and how far she has come. Just yesterday, I saw her singing and signing all the songs and taking the lead with her classmates. She really seems to enjoy being there and having fun in the classroom.

As for little Miss Avery...she is a Mamma's girl! She is getting so big and growing into her personality. She is full of smiles for us when she wakes up every morning. She LOVES to stare at her big sister. She HATES the hours of 5pm-8pm. That's when she cries and cries and cries, haha. She loves being outside and hanging out in her stroller. She is doing great with tummy time. She is a good eater and a great sleeper. She is a perfect addition to our family!

Ella Tapp Is Awesome!

What a crazy, fun, sleepless, busy month it has been...and I wouldn't trade a moment of it for anything. Avery is now one month old and growing like a weed.

In fact, it seems like there is a "growing" competition in my house these days. Both girls are getting so big. We celebrated Ella's 3rd birthday on June 15th. I can't believe my baby is 3!!!

I started writing this blog almost a year ago for a number of different reasons. I wanted to share our experiences with Ella's diagnosis and development. I also wanted to have a record of this time and something that I can share with Ella when she is older. I want to remember the important milestones, etc, but I also want to be able to look back at the blog and smile and remember the fun moments that we shared as a family. I have done a lot of reflecting on the last three years recently. The time has gone by so quickly. I keep telling both girls to slow down a little....I want to take a deep breath and enjoy every moment. As I think about the day Ella was born and the stressful times we dealt with, I am even more grateful for all that we have today.

I decided today's blog would be special for Ella...and every birthday blog to follow for both of my children. A love note of sorts for the two most important girls in my world!

Dear Ella,

You are 3 years old now. A big girl in every sense. You continue to amaze and inspire us every day. I love your new independence and determined personality (even if you are fighting me about hair and clothes and what to have for a snack!) You have had quite a year. You not only got up and walked for us, you soared! I think your new sentence (that is on repeat these days) "Ella Tapp is awesome" can truly define YOU and what you have accomplished. I am even prouder of how you have changed your father and me. We are much better people because of you. You taught us the true meaning of unconditional love. You made us fighters, advocates -- you gave us a reason to speak up and make sure you have the very best there is in every aspect of your life. Today you woke us up at 6am. You were ready to start our day. With a big smile and sparkling blue eyes you crawled into our bed. The next thing we know....you were jumping on the bed! It's this new daring side that excites me. If someone told me a year ago, that this would be the start to my day, I most definitely would have been skeptical. I have learned though, that there is nothing that you can't or won't do. I look forward to the next year and what I will be writing about. One thing I know for sure is, it will be AWESOME! I love you, Pnut!

On The Charts!

Ella is just a few days away from turning 3! It's hard to believe that she is growing up so fast. She really is a BIG girl now. Not only is she handling her big sister duties very well. She has gained a new level of independence now that I have my hands full with a new baby. She has also grown a lot taller and stronger. In fact, Ella is finally on the growth charts! At her recent three year old well visit we learned that our 27 lb 34 inch toddler is in the 16% for weight and the 2% for height. It may not seem like much, and yes she is still a Pnut, but she is growing and catching up. It's been a tremendous year for Ella.

Ella loves to ride her bike!

Ella took her first steps just about one year ago. I will never forget the day. It was June 14th (the night before her birthday). We had just gotten home from the pool and she was excited to see her balloon still floating in the living room. That balloon and a little bit of cheering from Jason and me was enough for her to take those first solo strides across the living room. I can honestly say it was one of the happiest days for us. I cried at the sight of her doing it all on her own. She had worked so hard for this. It was hours of time with Jen and Linda (our awesome PT's) that had finally paid off.

Today Ella is doing all the things a girl her age should be doing. She runs, jumps, climbs and pretty much finds every way possible to get into trouble. She has even shed some of her cautious ways as we have found her standing on her toy chest, jumping on the bed, and even climbing the tall slide at the playground.

As we get ready to celebrate another milestone with her birthday, I am excited to think about the future. I can't imagine what she will accomplish next. I know she has such a bright future and so many more exciting moments :-)



Caught climbing the toy chest!

In 'Da Club

One week ago today...at 9:44 pm the Tapp's officially became a family of four! Avery Jessica Tapp was born healthy and happy at Albany Med to the tune of 50 Cent's "In Da Club". She was almost as impatient as her sister and decided to surprise us with an early arrival. While it wasn't exactly how we thought our Friday night was going to be, we couldn't be happier. Our doctor was awesome and knew that we had been through a lot with Ella's delivery. She made every effort to make this time around calm and memorable.  We had music playing in the OR (hence the rap tune on the radio ;-) ), Jason was able to take some great pictures and their was a calm, happy mood all around.

When we heard that first, loud cry, a sense of relief filled both of us. Avery tipped the scales at 6lbs 7oz and was 20 inches tall. Not to be outdone by her big sister, she did have a few curve balls for us. After a quick trip to the NICU (because of some concern over some extra fluid in her lungs), she was back down in my room. The NICU was more of a precaution than anything and while it was really upsetting to hear that she was going up to the place where we had so many difficult memories from our time with Ella, I am relieved to know that she was getting great care. We left the hospital on Monday as a party of four. I can't even express the feeling of happiness that drive brought me. It is everything I have hoped and dreamed about for the past nine months.

Our first week at home has been pretty amazing. Avery is the perfect addition. She is a good baby...and certainly has her own feisty little personality! Ella is a fantastic big sister. She has made the transition better than we could have hoped. She loves to help with diapers and thinks it's hilarious to tickle her sister's toes. I can't believe how BIG my Pnut feels now. She has gone from my baby to my big girl over night.

Jason and I are doing great and learning how to be parents of TWO! We appreciate all of the kind comments, phone calls, text messages and well wishes we have received. It's an overwhelming feeling to have so much love both for our family and from our family and friends.