Wednesday, November 27, 2013


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!

Wednesday, October 9, 2013

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.


Monday, September 9, 2013

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.

Wednesday, August 28, 2013

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

Wednesday, August 7, 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. 

Wednesday, July 17, 2013

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.

Tuesday, June 11, 2013

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 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!

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."

Thursday, May 16, 2013

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.

Monday, May 13, 2013

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!

Tuesday, May 7, 2013

Good Medicine

Avery is always looking up to her
big sister!

Since the day Ella was born we have done everything we can to help her thrive and succeed. She has seen dozens of specialists and therapists. At times it seems as if life is a revolving door of doctor's offices, lab tests and medication. It's exhausting, but you will not hear me complain. Everything we have done for nearly four years now has been so helpful. Jason and I are forever grateful for the team of early intervention therapists who did so much to help Ella learn to eat, crawl, walk, sign and talk. We are also incredibly fortunate to have an excellent team of teachers and therapists now. Jessica, Renee, Heather, Emily, Erin, and Yvonne truly want to see Ella accomplish new things. They are on top of everything and are constantly making sure what they are doing is tailored to Ella.

Double trouble in the supermarket

We have also discovered what may be Ella's best "medicine" yet....her little sister, Avery! Now that Avery is nearly a year old, she is into everything. She also wants to be doing everything just like her sister. There are pros and cons to all of this. Your typical sibling rivalry is certainly emerging in our house. If one girl is sitting with Daddy, the other one is surely climbing right up on his lap too. What one girl has, the other wants (usually immediately!) Sometimes this tit for tat back and forth erupts in tears and tantrums. More often than not though we are seeing a more positive side effect.

The girls motivate each other. Avery studies Ella's every move. She tries to copy her every chance she gets. On the flip-side, Ella is trying to keep ahead of the daily changes and advances of her baby sister. Gone are the days where Avery stays put. Avery is lightening fast. She can make it up our stairs (all 15 of them) in a matter of seconds. Ella is a lot more cautious and her muscles tire a little faster. She usually takes her time making it up and down, but now she does NOT want her sister to beat her. She has really "stepped up" her game. Avery is also pretty vocal and Ella has taken note. I am not sure if its coincidence or competition, but Ella is putting bigger sentences together, with clearer words. She is even using some of this new language to put her sister in her place. "No, no Aves" with a finger waving is a common phrase these days. We are working through some other side effects of being siblings. We have seen some regression and some actions (potty time trouble and bed time drama are the most noticeable) from Ella. I imagine it is all an effort to try and get a little attention or at the very least deflect attention from Avery. Constant reminders that Ella is a "big girl" has helped.

Soon Avery will be walking and talking real words and sentences. There will likely be things that she will be able to do better than Ella and faster than Ella. That reality is soon. Jason and I have talked about it a little, but it's more of an unspoken understanding too. It comes with mixed emotions and feelings that are hard to express in writing. But we live in the present and we look toward the future with optimism.

Tuesday, April 23, 2013

Wild Child!

I realize I haven't written for a while. I have been very busy with work and the kids and squeezing in some sleep here and there. I have been meaning to get this entry in, I want to talk about Avery. She is my wild child! She is nearly 11 months old now and into just about everything. She crawls, climbs, wiggles and squirms her way into any spot she wants to be. If she can't get to where she needs to be or have what she wants, be prepared to hear about it. To say Avery is strong willed is probably an understatement. Don't get me wrong, she is a really good baby. We are having a blast experiencing all her "firsts". However, it is also a bit surprising to Jason and me. Ella was (and still is) a pretty calm kid. She takes her time with things and is pretty cautious. At times this can be frustrating, but now we find ourselves appreciating Ella's often tedious and methodical ways.

Avery wants to walk in the worst way. She is now finding anything she can push to get where she needs to go. She is not a fan of being contained. That means the swing, excersaucer, and any other confining apparatus is out of the equation. She climbs up the couch and thinks the stairs are her mountain to conquer. She has endless energy.

Avery would rather stand in the wagon!
Avery also loves to be near Ella. She may be just a baby still, but she truly adores her big sister. Her smile and excitement when she sees Ella in the morning and her strong desire to be playing with all the same toys at the same time is adorable to see (until the hair pulling starts, haha). I have a sister who I am very close with. I love that they are already building a beautiful bond. (I know I will be reminding myself of these words during their teen years) It also makes me think about the future and how I hope they continue to be close.
Ella on the slide..."look mom, no hands"

Things come very easily to Avery. Ella has to work hard to make her muscles do the things the way they should, to keep up with friends on the playground and in the classroom and to speak the words that come so naturally to others. You have heard me boast about her accomplishments endlessly. She makes me proud to be her mother every day. Avery also amazes me too. I know it's just the beginning. She will one day understand her sisters struggles. I hope and pray that Jason and I can instill in her the same believe, confidence and expectations we have for Ella. I want Avery to be so proud and yet protective of her big sister. It will be something that will set her apart from her friends and will no doubt make her a better person.

Monday, March 18, 2013

We have a crawler...

Aves is on the move! There is no stopping her now. She can crawl and climb and get into EVERYTHING. It is so much fun to see her actually crawling all around. This is a true first for us. We never experienced much crawling with Ella. She was a "butt scooter" for a while (much to the dismay of her PT's). She got to where she had to go, but for the most part I didn't have to worry about her getting into too much trouble. Things are different now. It only takes Avery a matter of seconds to get a hold of something new. We have named her "Tornado Tapp".

It only takes a matter of seconds
to level a book shelf :-)
She especially loves to be right with her sister and playing with all the same toys. She has emptied toy chests and leveled book shelves in a matter of seconds! I am not sure Ella knows what to think of her sisters new found mobility. Sometimes she just says no, no, no and moves her toys away, other times she obliges and lets her play. It is very cute to watch.

Seeing Avery crawl makes me realize a couple of things. It makes me excited. I couldn't wait for this day and when we finally saw her figure out how to move herself forward, it was just as sweet as I had imagined. It also made me realize how far Ella has come too. She has had to build up strength and work so hard just to do things that come so much easier with typical development. There were days (dark ones) when I would wonder if she would ever be able to walk or crawl or talk. Today she is doing all of that and more. As I watch Avery reach each new milestone with such ease, I remember not to take these moments or anything for granted.

Ella and Avery are strong in their own ways. Ella is strong willed. Avery is physically strong. Both of my children have made me a stronger person. I am so proud of them, fiercely protective and a tireless advocate. I have a different perspective on so many things today. I look at my life today and wouldn't want to be anything than what it is. It is perfect....despite every hurdle, doctors visit, triumph and set back.

Tuesday, March 5, 2013

Small and Mighty

We are coming up on the two year mark of Ella taking growth hormone. I can't believe the difference this has made in her life. She is doing so well now and growing at a good rate, I almost forget what we were dealing with and how small she really was. Looking back, it was a very scary time for us as new parents. 

Getting ready for her shot.
This was taken in the first weeks of our growth hormone journey.
Look at how little she was!
When Ella started getting the shots, she was almost two years old and just a little bigger than Avery is NOW (at 9 months!) Looking back at the stats...Ella had her first shot on April 1, 2011. She weighed in at 17 lbs and was just 26.6 inches tall. For some perspective, Aves just had her 9 month check up where she weighed 16 lbs and is 27 inches tall.
Avery at 9 months old
I have said it time and time again, Ella has grown at rapid speed. Today we are starting to move into size 4T clothes and she is over the 30 lb mark. Both girls fall in the 10-15% range on the growth charts. Neither one of the Tapp girls are going to be giants. They are small, but they are mighty and both will no doubt do big things :-)

Thinking about where we were and how far we have come is emotional for me. Jason and I were thrown into a world of needles and mixing medications, measuring doses and making sure the shot sites were clean and sterile. It was an overwhelming undertaking for us. Neither of us have a medical background...yet, we were giving our little girl a shot every night. Fast forward two years and we are so much more comfortable with the process. Our lives got a little easier too with the switch to a new way to give the shot.

This is the new Nutropin pen
This month we switched to the Nutropin Pen. It looks like an epi-pen and contains all her doses in one vial. We attach a small needle every night. We no longer have to deal with needles and mixing! The feel of the pen is different. It will also be a little harder for Ella to give herself the shot, but I am sure she will get it eventually. I am very pleased with the switch. I am also still optimistic that one day Ella will not have to have a shot. I look forward to the day that doctors and researchers find a way to deliver growth hormone through another method. For now, we will continue with our routine and continue to watch Ella grow up...literally!

Wednesday, February 27, 2013

School stress...already?!

I can't believe we are already thinking about kindergarten choices for Ella. She is still more than a year (at least) from kindergarten, but we have to decide soon where and when she will go to school. This was all spurred by a phone call earlier this week from my school district asking if we would be registering Ella for pre-k in the fall. I hate to admit, but it was almost like the woman was speaking to me in a foreign language. I should know better than to answer a phone call when I am in the middle of a court arraignment (covering a news story, of course). I was distracted to start. I also wasn't expecting to have this decision, NOW. I assumed Ella would continue at Unity (with all the services she is getting) for another year and then transition to pre-k. I also anticipated holding her out of kindergarten an extra year. I think she would be more successful starting school as a six year old. That extra year would give her more time to catch up and develop.

Cue the crazy thoughts and anxiety! I don't know if Ella will be allowed to start school late. Sure, it is my decision. However, this could mean that she would also miss a year of services. I fear this could create a major set back. The district may suggest enrolling her when she is eligible to start and then possibly repeat kindergarten. I am strongly opposed to this option. The last thing I want is for Ella to spend an entire school year feeling like she is struggling. It all comes down to money and with school budgets very tight these days unfortunately special Ed programs (as well as many other important school programs) can and do suffer. I don't want to send Ella to school if she is not ready. I am in no way doubting her and her amazing acoomplishment. She may be ready. She is making huge strides every single day. Two months ago, Ella's language was limited to a few mumbled words. Today, she is putting short sentences together and so much more aware of her ability to vocalize. I can just imagine where her progress will be in  June or even September. So what do I do? Hold her out a year and perhaps have less/no services....or send her to school as a 5 year old?

These decisions are never easy. This decision is complicated.  I feel like kindergarten sets the stage for Ella's school experience. I LOVED school. I was a good student and by all accounts a teachers pet. I was always reading books and I was excited for weekends to be over to get back to the classroom. I am proud to admit I was a nerd :-). I don't expect or need my children to be exactly this way, but I do not want school to be a place where they feel like they struggle. Right now, Ella enjoys going to school. She runs into the classroom and I usually have to drag her out by the end of the day. I don't want her to lose that enthusiasm. There will be challenges ahead. We all run into these challenges, it is part of life. Ella's challenges may be greater. I am not sure what level of support she will need. I do know that she will remain in an integrated classroom. Our goal is to have little support as necessary. One thing that is certain is we will give her all the tools she needs to be successful.

I am very lucky to have a lot of people in our corner. People who love, encourage and support Ella. Not only is my sister a school principal, her background is in special Ed and she spent years as a kindergarten teacher. She is my sounding board. Ella's current teachers are also a great resource. I have already voiced my rambling concerns about the future and she had great advice (and hopefully doesn't think I am nuts, haha). Jason and I are going to check out the pre-k program in a few weeks as well. I am hopeful we can have some of our questions answered regarding eligibility, etc. In the meantime, I am hoping to curb the freak outs to a minimum. If kindergarten is stressing me out, I can on,y imagine what happens when college rolls around!  I feel our decisions with Ella have been good up to this point and we will make the right choice this time around as well.

Thursday, February 7, 2013

On a roll...

February has been a good month...and we are only 7 days in! Ella is doing so well. She is healthy, happy and learning/saying/doing something new every day. I am so proud of her progress. She is potty trained (finally). I buckled down a few weeks ago and committed an entire weekend to getting her out of pull-ups. At the advice of several friends, I tackled the "3 day potty training" method. I was skeptical at first. How can a child be potty trained in just days? I have always envisioned a long, nightmarish process. I have actually dreaded this part of parenting. I can handle pretty much everything. I have embraced the walking, crawling, feeding, drinking...all the teaching you figure out along the way. Potty training honestly scared me. It was a LONG three days, but it worked. I am a believer now! I am happy I did it and it was far less painful than I anticipated. Ella is doing so well with it and has a new sense of independence. It is a good feeling...for both of us!
Ella is also (knock on wood) really healthy. Her lab result and report from her visit at Children's hospital last month arrived in the mail yesterday. I was so nervous opening the envelope. I don't know why?? If there was any problem, I know I would have gotten a phone call from the doctor much sooner. Still, there is always the anticipation of the unknown with Ella. The letter was very positive and Ella's thyroid and hormone levels are NORMAL. This is the first time she has been in the normal range for everything since she was diagnosed. The stability is evident. Fingers crossed we continue on this path.

We also got a great report from the ENT. She had a surgical follow up earlier this week. Everything looks like it is healing well. Dr. Mousakis also immediately noticed a positive change in her hearing and speech. This has been the biggest difference since the surgery. She is definitely saying a lot more, trying to form sentences and responding to questions and directions a lot faster. We have all noticed a difference. Her teachers have had positive reports on her daily progress at school. Ella is on a roll!

Ella isn't the only Tapp doing big things in our house. Avery is getting ready to take off. She has figured out how to get up on all fours. She will be crawling in no time. She also loves to stand and is trying so hard to pull herself up whenever she can. She is into everything. She LOVES Ella's toys. It's a great day for her when she can get her hands on the princess castle.

On the rare occasion, we even have some cooperation and a nice moment between sisters....with "moment" being the key word. As quickly as the sharing starts, it ends. We're working on it ;-) Despite any of the challenges, I would like to bottle up these moments. I already feel like time is going by way too fast.

Monday, January 21, 2013

My nose is running....

'Tis the season for germs! Ella has been announcing that her "nose is running". She says it over and over and over. Sometimes her nose isn't even stiffly and she feels the need to announce her subsequent desire for a tissue. It is adorable and annoying all at once. I love hearing her emerging vocabulary (hugely improved post surgery). What I don't love is that she gets hit with the nastiest bugs. For Ella, that runny nose unfortunately turned into a lot worse. In what has become true Ella fashion, her little cold turned into a big sickness. We ended up at Albany Med with a high fever Wednesday. She was admitted after the x-rays and blood tests showed that she has pneumonia and RSV (a lung infection). It was horrible news, but at least she wasn't dealing with the flu as well which was a big concern when we first arrived in the ER. This was just shy of one day to the year that she was hospitalized for pneumonia last year. She was admitted on January 17, 2012...this year it was January 16. Talk about a horrible coincidence and something we don't want to re-live EVER AGAIN. It's safe to say that the Tapp's probably will start a traditional hibernation of sorts in mid-January next year.

We spent three days at the hospital and Ella seemed to bounce back pretty quickly. She still has a lingering cough and that runny nose persists, but we are incredibly thankful we caught this as early as we did. She was such a trooper in the hospital. The poor girl was poked and prodded and hardly got to rest with all the doctors and nurses in and out. Jason and I split our time with Ella, while trying to balance work and making sure Avery was all set at home. I took the day shift, while he spent some sleepless nights in a chair next to her bed.  There are not many feelings worse than seeing your child in the hospital. We are so thankful for the support of our family, co-workers and our Nanny and my mom who worked some long days and made sure Ave's was happy and healthy!

Feeling well enough for some
art projects at the hospital.
I am happy to report that we are on the mend. I have my fingers and toes crossed that this is the worst of the winter germs that we have to deal with (for many years, haha!).

Wednesday, January 9, 2013


Sister Love!

I have a feeling things are about to get VERY interesting in our house. Avery figured out how to get herself up on all fours this week. She isn't crawling yet...she gets ready and then looks at us wondering what to do next! It is very cute and incredibly exciting. This is a new experience for Jason and me. Ella didn't really crawl. She had her own timeline for meeting milestones. We still celebrated every moment and we will do the same with Avery. I was snapping pictures and sending Jason video messages all afternoon as Avery tested the (pre)crawling waters.

Ella even helped cheer on her baby sister, encouraging her and showing her what to do next. This was such a nice moment to see. It ended pretty quickly though. Just minutes later, Ella was pushing her sister out of the way. We are seeing a little more of this aggressive behavior. I turn my head for a second and Ella is ripping the paci out of Ave's mouth or snatching a toy from her hands. I have caught her pushing her over and even covering Avery's eyes by pulling down her headband. Lets just say we are not at the point of unsupervised play! The battles should be fun when Avery can crawl to any toy she wants. She is already eyeing Minnie Mouse and Doc McStuffins (Ella's favorites)

Ella is also finding her voice. A favorite phrase recently is "Enough Avery!". She loves to chime in when her sister is fussing. She even speaks up if Avery is happily babbling. I think she likes the little power trip. She is also likely mimicking me. I realize now I must say "Enough Ella" when she is mid meltdown or just having a whiny day. Looking on the bright side, at least she is listening and hears me.

Another favorite word from Ella is NO! She is definitely testing her boundaries with Jason and me. Her teachers also tell me she is becoming a bit more stubborn. Her easy going nature is being over powered by her desire for a little more independence. She gives her dad a hard time with just about every choice in the morning from getting dressed to what to have for breakfast. She also finds a lot of satisfaction in avoiding me at school pick up time. When her teachers tell her to get her coat or that it is time to go home, she boldly responds, NO! Some times it annoys me, but more often than not I LOVE to hear it. I don't want a bratty kid, but I do enjoy seeing Ella doing and acting how so many other 3 1/2 year old's act. If Ella wants to walk the walk and talk the talk, she'll also learn to pay the price. She is quickly learning that crossing the line and naughty behavior leads to a time out. I hate to break it to her, but little sisters take mental notes. She better be ready for Avery!

Tuesday, January 1, 2013

Welcome 2013!

Wow! Can you believe it is 2013. Where does the time go?? This past year was a whirlwind for our family. It was filled with so many wonderful moments, memories that we will cherish for a lifetime. 

I would have to say welcoming our little Avery in May was the highlight of the year. She is such a joy and brings us so much love and happiness. Her smile is infectious and her emerging personality is strong and sassy. She can sit all on her own and she is trying to figure out how to get up and go. She'll be crawling in only a matter of time...and then the real fun begins :-) She has also turned in to my little chatter box. Avery has a voice and she is not afraid to use it.

Ella has exceeded our hopes and dreams in all that she has accomplished this year. She is such a great big sister. She has grown in so many ways with her new role. She is mom's helper, a patient teacher and sometimes an annoyed older sibling (she doesn't really care for crying, haha!)  

It was a rough start to 2012 with a hospital stay for pneumonia, but her health improved dramatically from there. She has grown more than four inches and packed on close to ten pounds this year. The switch to Boston Children's hospital for her treatment has proven to be a good choice. Ella has had a lot of new adventures this year too. She started preschool in the fall and loves every minute of it. She also started ballet. Dancing brings her so much happiness. She can't wait for class every Thursday night!

2012 will also be one remembered for some big accomplishments professionally for Jason. In his first year as a coach with the Union college men's hockey team, they played in the National Championship. An unforgettable season led to a trip to Tampa for the Frozen Four. Ella and I were so proud to be there to cheer for the team.

This year will also be a hard one to forget for a much more somber reason. We lost a very special person last January, Jason's sister Jessica. Her love for Ella and her excitement over the arrival of another niece are some of my favorite memories. It is these memories and the many others that help us cope in some of the darkest days. The holiday's were hard...the coming weeks will be even harder. It is still difficult to come to terms with the loss. It's a pain that will never leave us. I want the girls to know everything about her. I had pictures of Jessica in their room and I will always tell them how much she loved being an auntie and how truly special she was. Jessica is Ella and Avery's guardian angel!

My hopes for 2013 are for health and happiness. I am excited to watch my girls grow. These are the special times. My goals are be a good person, to pass this on to my children, to enjoy my time with my family and to learn from the difficult and stressful times. I can't wait to write about the big moments, the milestones, the accomplishments. I am even more excited to experience these moments. Happy New Year!