Remarkable

REMARKABLE: adjective re·mark·able \ri-ˈmär-kə-bəl\

worthy of being or likely to be noticed especially as being uncommon or extraordinary

Seven years ago my life changed forever. I became a mom to a remarkable little girl. Today we are celebrating Ella's birthday, but really we celebrate her every day. She came into this world in a whirlwind of chaos and confusion, tiny and a full head of black hair. As they whisked her away to the NICU, Jason and I had no idea how our world was about to change. I remember every second of June 15th 2009 like it was yesterday. It's hard to believe my baby is 7...my remarkable baby. 

Remarkable may be an interesting adjective for a 7 year old. Trust me, it is appropriate for Ella. At a recent check-up at Boston Children's hospital, the doctor that has treated her for years simply said, "Ella is remarkable." A profound statement from a physician who doesn't often offer up anything more than what is clinically necessary for Ella. She is direct and to the point and even after five years of visits, practically every three months, the relationship is still very formal. This is a doctor that I credit largely with Ella's current health and success. For her to say "Ella is remarkable" sticks with me as a mom. I have known this forever (for 7 years actually!) I love that others can see just how special she really is. 

"They" said Ella would never walk, talk or have any quality of life. She was actually labeled incompatible with life. Guess what? "They" were wrong. Ella runs around the soccer field, she danced in her 4th dance recital a few weeks ago, she talks to all her friends as she rides the bus home from school (one of her favorite things), she plays superheroes with her sister and brother and she shares laughs with her neighbors who have become her close friends. Ella is sweet and affectionate. She lovingly opened birthday gifts this year, inspecting every item and enjoying every minute. She is stubborn and has found her voice. She loves to eat oatmeal for breakfast and pizza any time of day. She is finishing up her final days of 1st grade and will start 2nd grade next year with her peers. She has taught us so much and will continue to do so. "They" couldn't be more wrong about Ella. 

So as I watch Ella blow out the candles today and play with her friends, I will really see once again how remarkable she is. A little girl who is certainly uncommon and extraordinary. Happy Birthday Ella! #lucky7

Miles of Smiles!

Ella has taught me so much. I have learned to appreciate all the things you tend to forget about once you have grown up, because work along with other stuff takes over. I was reminded of this once again this week. Things like, how much fun it can be to ride your bike. Simple things that really made us smile.

Rocking her new glasses!

Riding a bike is a big milestone for so many children. It's celebrated by parents everywhere. Milestones are important. I know this; I get it. I know because I'm not just Ella's mom -- I'm also Avery and Kellen's mom. I am not sure I can put into words how happy Ella's bike riding made Jason and me yesterday. I am not "happier" for Ella, it's a different feeling, a much deeper feeling rooted in our past. I must have watched the video dozens of times. Whenever Ella reaches one of these big milestones, I instantly go back to that day in the NICU. It's all still so clear to me. Hearing the doctor and the genetic councilor tell us that our beautiful little baby's future was bleak. Her chances for walking, talking or even general quality of life automatically diminished by a blood test that showed a complex chromosome re-arrangement. Her diagnosis considered "incompatible with life". If only we could have flashed forward to this day! So many of our worries would have been erased and replaced with hope, inspiration and happiness.

Ella is now in 1st grade. She is doing very well in school. She has adjusted amazingly well and continues to surprise us every day. More than anything, this is very comforting. She keeps up with her siblings, her friends, her classmates. She comes home with great marks on her Friday spelling tests. She gives me a hard time doing homework some nights. (This can be frustrating and also in some strange way just fine. It means she is acting like any other soon to be seven year old.) She has her first soccer practice in a few days. She asked to play...so we signed her up on the 1st grade team. (I can't wait to see her out on the field!) We always strive to make sure she never feels like she can't do something. It may take her a little longer, but she will get there. Ella does everything with a smile on her face and pure happiness.

Her smile was beaming yesterday afternoon. Ella is officially training wheel free!!! She is cruising around the neighborhood on her two-wheeler with all her friends. She has been working on this for a while. She started riding her bike last spring, just about a year ago. Her bike was almost instantly her "happy place". She was all of a sudden 100% keeping up with her peers. She spent hours riding up and down our street, around the cul-de-sac and everywhere she could. Avery decided a few weeks ago that she was too good for training wheels. We took them off and off she went. Everything comes very easy for Avery. For Jason and I, this was a moment full of conflict. We were so proud of Avery and her strong will and desire to do things years beyond her age. We cheered for her, we celebrated the big moment, we shared her video with all our friends and family. It was also a moment where we worried if it would break Ella's spirit. Ella was excited for her little sister, but definitely determined at that point.

I let Ella set the pace. We would work on her bike without the training wheels here and there. I was always willing to help her when she asked. I tried not to push her, because I didn't want her to feel pressured to do it. I wanted this to be Ella's accomplishment, not something she had to do to keep up with Avery. Balance isn't Ella's strong suit. She is also more cautious and careful than her sister and some of her friends. She had some nasty falls, but she never completely gave up. Something sparked her interest again this week and I had a feeling that she was going to get it this time. After a few (maybe 2 or 3) unsuccessful tries yesterday, she was off. She figured out the balance and coordination and hasn't turned back yet. Ella wanted to show EVERYONE her new skills! It was awesome to see the girls riding together. Avery is Ella's biggest cheerleader. She was genuinely excited for her sister. Avery has no idea about any diagnosis or challenges Ella faces. She is too young to understand, but I honestly don't think that will ever matter. They are so close and now they can cruise around together...training wheel free.

May they always have this much
love for one another!

This was just my latest proud mom moment, on so many levels. We can check another childhood achievement off the list for Ella. I am also relishing in the love and support my children have for one another. I am full of gratitude for the therapists, doctors, teachers, family and friends who have helped us along this crazy journey. These are the people who supported, encouraged, counseled, consoled and still cheer with us constantly. This won't be the last time Ella thrills us with her accomplishments. She's our inspiration! Cheers to many more miles of smiles :-)

100% Compatable

 

Thumbs up!

A recent article popped up on my Facebook feed. It was actually shared a few times now and after noticing the headline included something about a child with Trisomy 18, I took notice. A link to the article can be found here. It clearly illustrates how the medical community is flawed, especially when dealing with rare diseases and disorders.

This article hits home for me. It talks about a family with a beautiful, 2 year old daughter who was born with Trisomy 18. Part of Ella's genetic diagnosis includes a mosaic trisomy of chromosome 18 (meaning some of her 18th chromosomes have three copies). It is a serious diagnosis. To learn more about it, you can check out one of my first posts from a few year ago. It's a diagnosis that we learned is one with very little hope from the medical community. The genetic councilor who delivered the news of Ella's results told us flat out that our child was "mentally retarded" (exact words used) and that she was "incompatible with life". Imagine our horror, sadness and confusion hearing this. We were first time parents, sitting in the NICU, after the most chaotic episode of our lives. I remember Jason hugging Ella and me and saying over and over, look at her, it's just not true. They are not right. She is our beautiful little girl and this makes no sense.

This story out of Michigan reminded me of an encounter we had with a specialist here in the Albany area when we first had a hunch Ella wasn't growing at a normal pace. During our first visit, the doctor told us that she didn't feel any hormone testing would be necessary because "growth hormone would never help a child with a chromosome 18 abnormality". I remember fighting hard to get the blood work done. I also remember the doctor calling back with the results and all of sudden it was an urgent matter. This was the first time I really felt like my mom intuition was in full force. I felt vindicated that I fought for my daughter and advocated for her health and I was right. There was something wrong and she did deserve to be treated. Five years later and growth hormone and thyroid replacement medication has had a tremendous impact on Ella's life. I can't imagine where we would be today without these treatments. I have never stopped fighting for Ella. I will never stop doing everything in my power to make sure she has the best treatment. I will never let a diagnosis define my daughter.

Ella just after starting her daily shots of growth hormone!

It's a constant battle. Ella has been fighting a stomach bug on and off for almost a week now. I wasted no time getting her checked out. We are very lucky to have an incredible pediatrician who has been with us since Ella was born. She treats Ella for Ella and not what it says in her lengthy medical history. She knows when I come to see her for  a sick visit that it's the real deal and she works hard until we find answers. It took almost all week this time and some tests, but we have answers and Ella will be in tip-top shape again in no time.

Learning, growing, thriving!

Getting other people to get past Ella's complicated diagnosis has been incredibly challenging at times. I have had to deal with more than one doctor who was either hesitant to treat Ella, afraid to treat Ella, or fascinated by Ella. None of these scenarios are good when all you want is the BEST care for your child. I have learned a lot over the past five years. I know Ella's diagnosis inside out and I know Ella better than any doctor in the world. I have learned how to present information to doctors and I have also learned which doctors that we will not be seeing again. So much more needs to be done to educate doctors and genetic councilors, specialists and others in the medical community. It is not okay to discount any person's life. It is not right to not give any child or any person the ultimate chance at living a fulfilled life. 

Kingergarten Kid

Ella has been in Kindergarten for a little more than a month now...so it's about time I get back to this blogging thing. I have so much to update and so many feelings about school, growing up and the future! Kindergarten is a BIG deal. I am proud to say I handled the first day a lot better than I ever expected I would. Not a tear was shed (on that day). As expected, Ella did great and was so proud to march right into school. She spent six weeks in the summer program getting to know her teacher, Miss Chew and the lay of the land. She was ready to go.

We have had a good month overall. It's been busy with dance class, both girls are taking swimming lessons (on different days) and Kellen is already 6 months old and full of energy. There have certainly been ups and downs as Ella adjusts to school. It's an adjustment for all of us. Kindergarten is a full day, so Avery is getting used to not having Ella around for much of the day. She misses her sister a lot and is always asking if it is time to go pick up Ella yet. It is very sweet to see her run and hug Ella every afternoon...and then of course there are the days when the tenderness only lasts so long and they are duking it out before we even get to the car! 

Hat Day at school!

Ella is learning a lot and it is so encouraging to see how she is picking things up. She is writing her name and pointing out some of her sight words on things at home (Wheel of Fortune especially, haha) There are some challenges as well. As homework becomes more difficult, Ella is getting a little more frustrated. She will tell me she can't do something and move back to something she is more confident in. It's happening at school as well. While I know a lot of this is very typical 5 year old behavior, I do worry that Ella will become frustrated. Her speech delay is pretty significant. The gap is closing, but at a snails pace. I hope that she doesn't regress because of this...shut down and not talk because she is frustrated or feels like she can't get anywhere. Everyone—learning disability or not—has their own unique learning style. Some people learn best by seeing or reading, others by listening, and still others by doing. Right now we are figuring out day by day what works best for Ella. One of the strongest assets I have seen this year of her teacher and the staff is that as soon as something doesn't work or progress isn't what everyone thought, a new plan, a better technique is tried. Most importantly there is constant communication which always puts me at ease at the end of the day.

We know Ella is smart. We know she is far more capable of doing and learning things then even she often lets on. Miss Chew is a master at getting many of these things out of her. She is so good for Ella and so reassuring to me. She has only been in school a month and Rome wasn't built in a day. 99% of the time I bring my positive attitude and know Ella has already surpassed any doctors or diagnosed expectations. There are still those fleeting moments (often when I have a rare moment alone or when I am deliriously tired) that I get upset. I can admit that there are times where I long for things to be easier for Ella, for her speech to be clearer, her muscles to be stronger. I snap out of it pretty quickly though. Ella is awesome, strong, smart and HAPPY. I am so proud to be her mom and so proud of how well she is doing.

Ella's artwork hanging in the hallway at school!

All children need love, encouragement, and support. I am so confident in the setting Ella is in right now and with the teacher and therapists and classmates she has. All of these positive reinforcements will no doubt help ensure that she emerges with a strong sense of self-worth, confidence, and the determination to keep going even when things are tough.

PS - Stay tuned for my next blog...this week I have to dedicate an entire post to Aves. She is my quirky, funny, strong willed two year old who makes me laugh (and lose my patience) every day. Her one-liners and "weird" little ways must be shared!

There is a reason...

Reading to her brother and sister :-)

I have not posted a new blog for months! The summer is always a busy time and now with three little Tapp's, life is even busier. I love it. I am exhausted and I am lucky to squeeze in 4-5 hours of sleep a night, but I wouldn't trade it for anything. Have I mentioned I love life right now! It's hard not to, really. There is a reason...plenty of reasons actually! I have three healthy and happy children, a husband who is my partner, bff and confidant, and a job that allows me to have a career and be a mom. Then there are all the extras, one of the most prominent these days is Ella's education.

A very proud Ella after the first day of Summer School!

She will officially be a kindergartner in the fall, but because she gets services like speech, PT and OT at school, she qualifies for the summer program. We made the move a little early to the Kindergarten program she will attend in September. It was 100% the right decision for us. There is a reason certain people come in and out of your life. Like the old adage says, some people just for a season...others last a lifetime. There are people, teachers, friends, coaches, and mentors in all of our lives that can leave a mark and bring about so much change. Although Ella has only had about three weeks in her new classroom, I have a sense that her new teacher is one of those people.

Jason and I first met Ms. Chew in the early spring at one of our district special ed meetings. We both left the classroom with a good feeling immediately. Ms. Chew gave us the sense that she is the right combination of compassion and toughness. She has been teaching special ed for 29 years. She has seen a lot and she loves her job and her students. Her honesty, integrity and passion for teaching is evident as soon as you meet her.

We know what Ella is capable of. We know that she is a smart, sweet, loving little girl. She has made tremendous progress in her five years despite what some doctors and diagnosis have labeled her. We have always believed that Ella is so much more than some mixed up chromosomes or lazy little pituitary gland. We know she is strong willed (she has to be) and we also know she has a fierce stubborn side (I blame Jason, haha!). She has always been curious and takes her time to study her world around her before taking the leap on her own. Our mission has been to make sure everyone else knows all of this about Ella as well. We have been so fortunate to have had so many wonderful therapists and teachers already. Many we still stay in touch with on a regular basis and others that are able to still follow Ella's journey through the power of social media.

Ms. Chew has kept her word she gave us back in March. She has taken a great deal of time just getting to know Ella. She pushed aside stacks of reports and medical records for a little while to just see what our girl really is made of. Of course, all that paperwork is important and Ms. Chew knows that, but her understanding of the children in her classroom embodies so much more. She has said to me a number of times now that Ella has so much inside and she is determined to get every last bit of knowledge and smarts out of her. Jason and I would agree that Ms. Chew is making some good first steps on her way to accomplishing that. Ella's progress has been tremendous in such a short amount of time. She is writing her name clearer, learning her numbers and just so much more aware of the world around her. Her speech is getting better and her sentences longer. Ms. Chew recognized almost immediately that Ella is a visual learner She loves watching her study her classmates. Ella has always loved school, but she certainly has an extra skip in her step walking in to the "big school" (as we like to call it).

I am so impressed with Ella's writing!

All of this brings a sense of happiness, relief and excitement to Jason and me. We have always known Ella's potential, but seeing her change and grow and learn is reassuring. Knowing that we made a good decision to send her to public school, to start the program in the summer and to give her the tools she needs to succeed gives us confidence moving forward. This is exactly where Ella needs to be today. 

Happy 2nd Birthday Avery

Dear Avery,

It was two years ago today, on the busy Friday evening of Memorial Day weekend that you made your big arrival into our family. You have kept us busy every day since! Today you are a smart, feisty, beautiful two year old. You have done so much in the past 12 months. You became a big sister, you found a love for hockey, you tested out your climbing and crib diving skills and you made our hearts melt just a little more each day along the way. You are our sporty spice, our bossy Betty and our sweetheart all wrapped into one compact little package. You are the middle of our family sandwich that makes it so delicious. Ella is lucky to have a little sister to motivate her and love her (even when you have her pinned to the ground) Kellen is also lucky to have someone break the ice along the way ;-). You test Daddy and I all the time, but those tests make us all appreciate this crazy life we have just a little more.

Avery, never stop being you. Keep up that sassy attitude. Keep your love for hockey and "backetball", makeup, Minnie Mouse and party dresses. Keep the big hugs coming and ALWAYS keep us on our toes.

I love you! XXOO

Settling In...and A Speech Update

The Tapp's are now a family of 5! Kellen completes our clan. We welcomed him April 1st and life has been a whirlwind ever since. In a short recap, we had a baby, Jason's team (Union Hockey) won a National Championship, Ella had surgery (more on that to come), and we celebrated my nephew Justin's 1st birthday. It's been almost seven weeks of fun, excitement, happy tears, plenty of diapers, and not a whole lot of sleep. I wouldn't change it for a second. These truly are the best days of our life!

Kellen is growing like a weed. He is already tipping the scales at 10+ lbs. He is happy and healthy...a very easy baby. This boy doesn't miss a meal and it shows. He already weighs what Ella weighed at a year. She was tiny!!! The girls are very good big sisters. They have adjusted pretty well. I still can't believe I am so lucky to have 3 beautiful children :-)

Getting back to Ella's surgery...she had her tubes replaced and  she had her ears and sinuses vacuumed. She also underwent an auditory brainstorm response (ABR)  while she was sedated. This test gives information about the inner ear and brain pathways for hearing. It can accurately tell us exactly what Ella can hear. We have had a number of hearing tests over the years. We know she can hear, but to what degree is always in question. Prior to this most recent surgery, Ella had been really off balance and would not respond to us calling her name. It was more than just typical 4 year old ignorance. The procedure revealed that her ears and sinuses were filled with fluid and hardened wax. She showed mild hearing loss in the left ear as well. Her recovery from surgery was very fast. The results have blown us away. She is hearing so much better and this has improved her speech clarity and expanded her vocabulary more than we ever expected. Even her ENT was impressed. He said he hasn't seen a child make such a dramatic improvement so quickly. Now we just have to monitor her closely. She will likely need to have the vacuuming procedure on a regular basis (2-3 times a year). We will also have to have regular hearing tests to see if the hearing loss is something that is degenerative or caused by the fluid. Time will tell but for now we are happy with her progress and hopeful she will continue to talk our ears off.

We have been busy, busy, busy and that trend will continue as we get ready to celebrate both girls  birthdays. Avery turns 2 next week. I can't believe it. School will also be wrapping up in a few weeks and Ella will dance in her ballet recital. I'll have lots of updates to come.

Brains In Your Head

“You have brains in your head, you have feet in your shoes. You can steer yourself any direction you choose.” - Dr. Seuss

Emotions are running high for this 8+ month pregnant momma. Between hormones and serious lack of sleep, I can become a puddle at the drop of a hat. Add in the reality that Ella is just months away from being a kindergartner and you have the recipe for an all out meltdown. I have long been emotional about this day. Kindergarten marks the start of an exciting new chapter. It also means my baby is growing up! Ella will be 5 in June...where has the time gone?! Even more incredible is the accomplishments she has made and the attitudes and perceptions she has changed just by being Ella. I couldn't be prouder and I know her future is bright.

For most parents, enrolling in kindergarten requires some paperwork around this time of year. Ella is a special ed student, so her enrollment is a bit more complicated. Just after she was born we were thrown into the world of Early Intervention and all the therapies, regulations and paperwork that comes with that. It was difficult to navigate at first, but we were fortunate to have some wonderful (and very well educated and informed) mentors. (Here is a blog post from a few years ago about some of these very special women who were a huge part of Ella's life.)

Now we find ourselves in another world, navigating the waters of the school system. Special education is not a "class" or "place" but rather describes a wide range of support and services. This week Jason and I met with our special ed chair person in our local school district to start the transition process. Over the next few months, we will be identifying goals, services, what types of modifications in learning Ella might require and most importantly what type of environment Ella will be learning in.

Right now, she is in an integrated preschool setting. That means her classroom is a makeup of special ed students and typically developing kids. She has a special ed teacher in the classroom for the entire day as well as a child care teacher and an assistant. She gets all of her services at the school...so some days she goes with the PT for 30 minutes, other days she has a small group session with the speech therapist. Most of her time is spent being just a regular 4 year old at preschool. The beauty of her innocence at this age is that she has no idea that she is different or has an IEP (individualized education plan). Our goal is to continue this integrated setting throughout her school years and maintain her positive attitude.

Our first meeting with the district was filled with a lot of anticipation. What should we expect? Will this be the start of a long fight? Will our local educators believe in Ella as much as we do? Our nerves were calmed pretty quickly. The district chairman is very positive and truly wants the best for every student. He never hesitates at a request for service and the word "CAN'T" does not generally exist in his world. We were equally impressed by the schools Special education teacher and the program she is running. She wants every child integrated and it seems she has made this her mission. We feel comfortable with her transition and have nothing but the highest expectations.

I know this is just the beginning. We will have bumps along the way, we will run in to challenges. Any parent of a student in special ed can probably relate. I hope that maybe our experience and my writing can help others understand. I know I can never erase stigmas, but if I (or Ella) can change one negative perception, we have accomplished a great deal for the next child/family to deal with some of these challenges.

I finish this blog on a happy note in Ella's new favorite things. She is talking a lot about Dr. Seuss in school these days (to mark the author's 110th birthday). She got to pick out a bunch of classic Seuss books at Target and has been obsessed with them. "The Cat In The Hat" is her favorite right now...she even sleeps with her books! She has a huge appetite to learn. It is so much fun to spend time reading these books over and over. She is learning the words and even correcting me some times. I love it...I love her...just another moment that makes me tear up! 

Sweet dreams about Dr. Seuss!

2014: Perspective

Wow! 2014 already...time is just flying. Now that we are a solid week in to the new year, I finally feel like we have caught our breath from the madness of the holiday rush. We had a very nice Christmas and New Year. For the first time ever, we stayed put. We celebrated as just the four (almost 5) of us at home in New York. Between my busy work schedule and Jason's recruiting and coaching commitments with Union, we unfortunately didn't have a lot of time to do much traveling. We did have a lot of family time though and that was very special. It seems that once hockey season starts and school and activities are in full swing , we tag team this family thing. It was a very busy fall (hence the blogging drought). It was so nice to have Jason home with the girls a little more and some time to just hang out and play and enjoy the fun ages of Ella and Avery right now.

We are starting the new year thankful for this family time and thankful for all we have. Both girls are doing so well. This month marks two years since we have been taking Ella to Boston Children's hospital. I can't imagine where we would be without the fantastic team of Doctors there. She has grown physically and emotionally. Jason and I have grown so much too. I feel so much more secure in her care and in her future.

My big girl skating on Christmas day!

My new perspective and evolving confidence was clearer than ever this week when a dear friend recently contacted me. She is pregnant (yay!) and will be delivering in Boston. Her bundles of joy will be at Children's hospital following their birth. I feel so honored that she reached out to me at such an emotional and exciting time in her life. We haven't been in touch as well as we should have, but the beauty of social media and blogging has kept us connected enough to know that I have experienced some of what she may go through. You can never be prepared for a complication in a pregnancy or a child that needs medical care.

Jason and I were completely blindsided by Ella's diagnosis. Even though my best friend had a baby a year before me and spent 70-plus days in a NICU, I never expected that I would be in that position of even spending one day with a sick baby. Since then I have watched friends near and far deal with their own NICU journey. Every time, the feelings I had back in June of 2009 come rushing back. I can't help but reach out with even just a simple facebook message to let that person know "I get it".  You learn to deal very quickly and you become a part of a "club" that no one ever wants to be a part of. Still all these years later, I carry the lessons learned and my experiences as a badge of honor. So when my friend called in her time of need, I felt those maternal/friend/personal instincts kick in. I know who is with me in this club and I know they are ready and willing to give as much support as possible. A few emails and phone calls later, I hope that we are well on our way to helping out! We can give as much "advice" as we want, but the truth is you can never really prepare a family for the roller coaster ride that life in the NICU brings. Talking helps...a lot. An immediate email response from a mom of some pretty extraordinary twins put it very well when she said, "The hardest thing about my NICU stay was that I didn't have anyone to talk to about it. Once I finally connected with others who understood it made it so much better." A network of moms, a coalition of friends to help you through every minute, every unexpected turn, celebrate every accomplishment is crucial. It is not an easy road to travel, but you can do it and you will come out stronger.

It's another reminder of how Ella has changed my life. I have said this so many times. I am a better person because of her...because of both of my children. I know that my friend is going to do just fine as she enters this new exciting time of her life and I (and many others) will be there, near and far to make sure she knows just how strong she is.

BU girls...all these years later, we finally fully understand the meaning of "that's what friends are for"

E-L-E-A-N-O-R

I can't believe how long it has been since I last wrote a blog! I have, of course, thought about it a million times and then simply run out of time (and energy) to do any writing. I really want to get a short blurb in today. I think it's one of the times/milestones in Ella's life that is so exciting. I don't want to forget it!

All in all, things are going really well. Ella is well into her year in the pre-k classroom. She has really bounced back nicely after her tonsil surgery. It was a long recovery, but we are certainly glad we made the decision now. She is sleeping better and her speech is really coming along.

Ella working hard on her letters!

Her new obsession is spelling. She is hooked on letters. She especially loves the letter "E". Any time she spots an E she is sure to point it out. At breakfast, in the car, in the tub and getting ready for bed we practice spelling her name E-L-E-A-N-O-R. She prefers her formal name and will actually answer to it over Ella. Who knew??  It's pretty fun...and she is getting really good at spelling it. We've even begun branching out to other names too. "A" for Avery and "T" for Tucker are starting to make their way into the name spelling rotation. She is also practicing writing her name. She has letter workbooks that she actually begs to use. She concentrates so hard and spends a long time working on her letters over and over again. It is really fun to watch!

The Middle Child

Our family is growing. In April, we will officially become a party of 5! This will make Avery our "middle child". She will be just about two years old. She is already full of sass, so a few months from now we expect that strong personality to be in full bloom along with a burgeoning vocabulary (hopefully a little more than "no,no,no"!). She won't be the baby anymore, and not as big as her big sister Ella. Jason is a middle child, so we already joke that they will be able to relate on a special level. The new baby may make our family complete, but we will be nothing without the meat in the middle of the sandwich. Our Avery is the super yummy filling that makes the whole thing jive!

The girls practicing being big sisters!

I have spent a lot of time thinking about Avery's place in the family. I am the oldest of two children, so this is a whole new adventure for me. Maybe it's hormones or just over-thinking things, but there is a small part of me that worries. I worry that my independent, strong-willed, imaginative and stubborn little girl will feel lost in the shuffle. My concerns compounded (as silly as it may seem), by the fact that I have always worried that Avery will feel overshadowed, over-protective, or jealous of Ella. I already can see how easily things come to Avery...every day things that Ella took a little longer to master. I never want Avery to feel burdened by the fact that she has a sister that has some special needs. I have said many times that we celebrate every milestone from both the girls with equal excitement and enthusiasm. That won't change when #3 arrives, but I still wonder what Avery will grow up to think. I always want her to know that her place in this family is so important.

I truly believe in life we are never given more than we can handle. Of course, I have found myself questioning this, but at the end of the day it is ultimately true. Avery is our middle child for a reason. She will never have to be the rule follower, type-A, good girl persona that traditionally comes with being the oldest. She will be the only one that gets to be the big sister and the little sister. She can take the chances Ella wouldn't take, teach her younger sibling a lesson or two on what or what not to do. She gets the chance to make her own path. She will make your own way, despite her place in the middle, or perhaps because of it.

 

One more year...

Ella is back in the full swing of the school routine. Jason and I (nervously) dropped her off for pre-k last week. She only has one more year before Kindergarten! She is still going to the same school, just a different classroom this year. It was a decision we went back and forth on for quite some time. She was eligible to start pre-k in our local school district. It's an integrated program and she would be the same school she will attend kindergarten. The option was appealing, but in the end we decided the 22 kid classroom was still a bit too big for Ella. Her new classroom is half the size with just 11 kids. She will still get her PT, OT and speech as well as that extra attention she needs to accomplish her goals.

This is a big year. She has lots of work to do to get ready for Kindergarten. When I met her new teachers, they made it very clear they will do EVERYTHING to make sure she will be ready for the transition. They were confident in their classroom. It was reassuring and terrifying. Following my instinct though, I knew at that moment we were making the right decision. I feel like the pressure is on! Of course, I know Ella doesn't feel this pressure. She is just happy to be back at school and having fun with old and new friends. Jason and I feel the pressure though. We know what is at stake. We want so desperately for Ella to go to kindergarten in a regular classroom and not feel overwhelmed or out of place. She has work to do with her language especially. A year can change a lot....we have seen it time and time again. We are following a bit of an unbeaten path still with Ella, so apprehension certainly sneaks in.

Ella was so happy to get back to school last week but for the first time I saw her get a little uneasy. She wasn't upset and didn't cling to Jason and me, she was just a little more cautious than we are used to seeing her. She was confused not to go to her old classroom. I am sure she felt a little at ease though after a hug from her new teacher.

I walked out nervous for her. I suppose every Mom is nervous for their kids at some point. I spent the entire morning thinking about what she was doing and if she liked her new teachers. I even texted Jason (a lot). He gently reminded me, "she's fine, she's the mayor" (referring to Ella's outgoing personality). I knew despite his calm responses, he was nervous too. I always call him at pick up, on this day I don't even think the phone rang once before he picked up saying, "how did she do?" Crazy parents! I arrived to a very happy girl who seemed like she had been there for weeks. She didn't want to come home. Her teachers say she is doing great and she is fitting in well.

I am learning to let go a little more. I still can't think about kindergarten drop off next year. (Pictures of friends kids make me well up!) It's a good thing I have a year to prepare myself. I am proud of Ella and excited for her future, I just wish time did go so quickly. Time will tell what her kindergarten year will look like. I must remind myself to take a step back and live in the moment.

Don't Doubt Ella (EVER!)

Ella and Avery walking the beach!

 

 

 I am a little late with this post. I guess you could say it took a few weeks to recover from the vacation hangover! We had a lovely week in Hilton Head this year. It was the first time we took a family vacation since Avery was born. It was a great week filled with the beach, sun, biking, golf and lots of good food. This was not only our first "family vacation", it was also Avery's first plane ride and the girls first real beach excursion. I have been going to Hilton Head with my family since I was a child. I couldn't wait to share this special place with my own children. I went into the week so excited for them...figuring every kid LOVES the beach. I had visions of building sand castles, splashing in the waves and walking the shoreline for hours on end to collect shells and other treasures. Needless to say this was not exactly our experience. Avery loved the water and running around. We came home with lots of shells and overall we made many happy memories.

Ella, however, was not a huge fan of the beach. The sand on her feet sent her into a tizzy and the ocean (specifically the tide and waves rolling in and out) was terrifying to her. Every time we felt progress was being made, she would revert back to tears. "All done, all done", she would yell as the water moved closer. Those first few afternoons on the beach were long. I felt badly for her and we tried everything we could think of to get her to relax and enjoy herself.

Since this was our first trip together as a family, I REALLY wanted to have some pictures taken on the beach. I wanted to capture this special time in our lives and these wonderful ages that the girls are at. Months before we arrived, I scheduled a photographer to meet us at the beach. Once we were in Hilton Head, I began to panic and even contemplated cancelling the shoot. Ella's beach woes were stressful. I had visions of her completely freaking out, crying and refusing to cooperate. As much as I had wanted the pictures, I also didn't want the drama to ruin a great week.

 I was quickly put in my place the night of the shoot. I was reminded (as I have been sooo many times), don't ever doubt Ella. She came through with flying colors the night of the pictures. Both girls looked beautiful. Ella smiled so brightly and never once let the sand or ocean bother her. I was humbled by my 4 year old once again. The night was extra special. I got my family pictures and I was also reminded of how fortunate I really am.

Hilton Head Island, 2013

Good Talking

Ya, Help, Stuck, Buh-bye...

Avery is talking! She is a bold 14 month old with a mind of her own and no problem expressing herself. This is a totally new experience for Jason and me. Like so many other milestones, the words just come so easy for Aves. Almost every day she has a new word. Ella has taken notice too. She even praises her sister. The other day in the car I just had to laugh when Ella burst out with, "good talking Aves!". Ella must hear me and so many other people (Jason, Jess, Renee, Erin, etc) say this all the time to her. I am almost hyper focused on every aspect of Ella's speech. When she has a new phrase or says something a little clearer, I am sure to let her know. She is really stepping up her game too. Five and six word sentences, asking questions and even expressing her own feelings are just some of the huge accomplishments we are celebrating these days.

Paging Dr. Tapp!

It seems like we have all the right ingredients. Ella has patient and consistent teachers. She has very good peer models. Her buddy Alesia has been by her side in the classroom since last September. If you didn't know better, you may think Alesia was a six year old with the vocabulary she has. It's a great example for Ella. Another wonderful model is my niece and Ella's BFF Lucy. They are 17 months apart and closer than I could have ever hoped for. Lucy is a chatterbox and a leader. She is always encouraging Ella. It's adorable. Perhaps the best motivator for Ella is her sister. It's been with Avery's new language that we have truly seen a difference in Ella. Her slow and steady progress which at times seemed tedious and plateaued has been amped up by a need to out-talk Avery. She is cementing her spot as the big sister and raising her voice in the matter!

I LOVE to hear the chatter in the backseat of the car. My day is made when Ella asks me "whatcha doin Mamma?". Her words are clearer, her sentences are longer and her world has opened up just a little bit more. I hope it continues. I hope this healthy competition stays just that. I never want either girl to feel burdened by the other. They may not know how good they are for one another now, but some day in the future I hope each realizes the value of their sister. 

So Happy!

I think it is safe to say that Ella and Avery are enjoying their summer. I know Ella is. She has become a little fish in the water. She lives to go swimming every day. Luckily we have a pool in our complex and my parents have a pool as well. She wakes up thinking about and asking to go swimming and spends hours in the pool. She is so much more independent in the water this year. The other day we were swimming and she just kept saying, "I so happy!" I was so excited. Not only do I love that she is such a happy kid, I love HEARING her tell me those words. Her vocabulary and spontaneous language has grown so much in the past few months. It still catches me off guard. It has been a lot of hard work, daily speech therapy and endless repetition, but we are finally seeing the progress we have been longing for. Everything from the longer sentences, to clearer words, to expressing her emotions has finally begun to emerge.

It is really special to hear your child speak to you. There is something about being able to have a little conversation with her that changes our relationship. Of course this is all part of watching your child grow. I know every parent goes through this feeling in some way or another. I think waiting a little longer for the chance to have these two-way conversations with Ella is extra special for me. I celebrate every milestone she reaches, but this is a big one. We have waited a long time to see significant progress in speech. I feel like I have more confidence now moving forward as we get ready for pre-k in the fall. I never doubt Ella. I have huge expectations for her, but it's funny how one small sentence can provide so much reassurance. I so happy.

Shake Your Tail Feather!

June 15, 2013 - Ella's first dance recital!

Happy Birthday Ella!

Dear Ella,

Four years ago on a stormy Monday night you gave your father and me the best titles we could ever ask for...Mom and Dad.

I can't believe how fast the time has passed and now the birthday countdown we have been talking about for weeks is over...you are 4! I love how proud you are to tell me your age and show me with your four fingers. You have had a HUGE year. You have grown into a beautiful, smart, happy, loving, girl. Today you will perform in your first ballet recital. You have worked so hard all year practicing your dance and following your teachers directions. You don't even have to take the stage yet for Daddy and me to know that you are our star.

Four years ago, "they" told me you might not be able to do this or that. I am sure the doctors and specialists who analyzed samples in a lab and scoured medical text books for answers NEVER thought you would be on stage on this day. In fact, just walking and talking and doing lots of things four year olds do didn't seem in the realm of possibility if you asked them then. Boy were "they" wrong.

First dance recital, June 15, 2013

This year you have accomplished so much. I love to see you run down the hallways at school, skip across our living room and TELL ME  you love me. You have excelled in your pre-school class (thanks to some outstanding teachers and therapists). You're a terrific big sister (even when Aves is pulling your hair and stealing your toys). You surprise us every day with new words and sentences and an awareness of the world around you that is so fresh, innocent and exciting. May you always keep this trait.

We have been reading "If I Could Keep You Little" at bedtime lately. I cherish these moments with you...snuggling in your new big girl bed and reading the story over and over. I know that I can not keep you little and I know there are even more fun times ahead., but some times I would love to slow down time just a bit or freeze an extra special moment to re-live over and over. I can't wait to see what this year brings. Happy Birthday to my amazing little Pnut!

Love,
Mom and Dad

"If I could keep you little, I'd keep you close to me. But then I'd miss you growing into who you're meant to be."

Skip To My Lou

       



I can hardly believe that Ella's weekly ballet classes are winding down. Her big recital actually falls on her 4th birthday. What an exciting day! It seems like just yesterday that I brought her to her first class. That day that I couldn't even watch the whole 45 minutes without a break to cry in the bathroom. We have come so, so far from that first day....both Ella and I. I really enjoy getting to see her development and meet the moms in the class. Ella has learned a lot and I have seen her get a lot stronger. It has turned into a very nice group and I am sad to see it come to an end for the summer.  Ella also seems to enjoy class every week. She always smiles and she has met some very sweet little girls. She is not the most coordinated or graceful. Many times she can't do as much as the other kids, but she always gives it her all. 

This week in class the girls were learning  to skip and sashay. Many of the moves take quite a bit of coordination...something Ella lacks. She couldn't really do it. You would never know by looking at her face. She smiled from ear to ear, giggled with the other girls and proudly waved to me as she walk/ran/slid/hopped across the floor. She poured her heart into it, gave it her all. She was blissfully unaware of any difference. In fact, not one other little girl seemed to think Ella was any different. My heart melted. Isn't that what it's all about? Giving your all and feeling good about yourself. At least when you are almost 4, that should be what it's all about. 

The whole night has me thinking a lot. First and foremost, I am grateful. When we were given Ella's genetic diagnosis in the NICU, it was devastating. The genetic councilor had horrible bedside manner and coldly and scientifically delivered the worst news Jason and I had ever heard. The words mentally retarded still haunt me. I guess any genetic disorder has quite a  wide range of severity in its features but I feel like chromosome 18p deletion must top them all.  This genetic condition that Ella has ranges from being normal to having brain structure abnormalities so bad that the baby would be born with one eye.  Ella has two beautiful eyes. :-) She might not be able to skip yet, but SHE WILL. She will do so much more and I promise to be there to cheer her on every step of the way. In a few weeks, Jason and I will be front and center at the recital. We will be the proudest parents in that crowd as we watch her perform. I don't care if she misses a beat or even stands there and only smiles for the three minute performance. Just being on that stage she has far proven that geneticists and scientist don't really have all the answers.

Happy Birthday Avery!

         

Dear Avery,

Today you turn the big 1! I can not believe how fast this year went by. You made quite the entrance last year on Memorial Day weekend, surprising your Dad and me as a May baby. We couldn't have been happier on that night to welcome you into our family. You have kept us on our toes ever since. You are a little girl with a BIG personality. You are beautiful, with the most stunning, big, blue eyes. You are a happy girl, greeting us with a smile when we rescue you from your crib every morning. You also have a fierce attitude. If you don't agree with something, you certainly let us know. You found your voice very early, and are always ready to give us an "earful" (even if we can't understand you yet!)

We thought we knew a lot about having a little girl, but you have proven us wrong in so many ways. You couldn't be more opposite of your sister, yet you compliment each other so well. We love to see you looking up to Ella and so eager to play with her and Lucy. Don't worry, some day they will (have to) include you. For now, continue to be that little nudge!

Don't lose your tenacity and determination. You will figure out that iphone soon! Also, keep showing us that we don't have this parenting thing down pat quite yet. You wouldn't want us to get too comfortable.

Daddy and I wish you a happy first birthday. We can't wait to see what you are up to next. Maybe you'll even get a few teeth soon ;-) Until then, we know you will have no problem enjoying your cake. We love you!

                          

    

Children's Check-Up

Thumbs up for a good check-up!

Ella had her four month check-up at Boston Children's hospital last Friday. This visit marks 18 months since we switched to Dr. Holm. We have made a lot of adjustments on medications and doses and we are finally seeing the benefits of those changes. Dr. Holm has been very deliberate and diligent with Ella's medication. When we first met with her in January 2012, she explained to us how small changes can make a big difference. We have seen the results of rapid medication changes to her health. It is not good. At times it seems like we have been on a slow pace and little change, TIME to adjust to the proper dose has proven to be the most effective approach.

We were excited to learn that for the first time, Ella's levels are perfectly normal. Her T4 and TSH (both thyroid hormone) as well as her growth factor all register right in the middle of the normal range. She gained 4lbs and grew more than an inch since January. So as we approach her 4th birthday she is 34 lbs and 36 inches and finally wearing 4T clothes. This would certainly explain her recent need for a whole new wardrobe!

Ella is still on a pretty high dose of growth hormone, but the plan is to let her continue to grow into this dose. She is responding very well and catching up. She jumped from the 11% on the growth charts to the 18%....all of this since January! When Ella was first diagnosed with hypopituitarism, she was not on the growth chart. That initial diagnosis also came with disheartening news at the time that there was "nothing we could do" to help her grow and that growth hormone "probably wouldn't help" (quotes from our endocrinologist at the time). It is gratifying to know that sticking with my intuition and remaining dedicated to finding help for Ella has paid off.

We return to Dr. Holm in September. We will have her annual bone age x-ray and a complete lab work up. If all goes well, we may be able to bump her visits to every 6 months!