Friday, October 10, 2014

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. 

Sunday, October 5, 2014

Kingergarten Kid

Ella has been in Kindergarten for a little more than a month 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!

Thursday, July 24, 2014

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. 

Sunday, May 25, 2014

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

Saturday, May 17, 2014

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.

Tuesday, March 4, 2014

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 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!

Wednesday, January 8, 2014

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"