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.