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.

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!

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.

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.

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!).

NO!

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!

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 simple...to 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!