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.