Tuesday, December 18, 2012

A Few Extra Hugs...

Life lately had been filled with lots of ups and downs. I have referred to the "roller coaster" before, but these last few weeks have been different. It has been emotionally draining at work, combined with the anxiety surrounding Ella's adenoid surgery. I am relieved to write today that she is doing well following the procedure. It took a few days to bounce back, which is normal for anyone post-op. She is back to school now and hopefully feeling much, much better. The surgeon told us her adenoids were far worse than he expected and she should have dramatic improvements in speech, breathing, sleeping and eating. Our fingers are crossed!! She was such a good patient, even battling a nasty stomach bug just 24 hours before the operation. In true Ella fashion though she handled every aspect of it like a brave girl.

My happy patient! Doing well
after her surgery.
 Ella's strength and resolve is what makes me so proud to be her mother. I have certainly held her a little closer, hugged both Ella and Avery a lot more over the past few weeks. I have reported on tragedy after tragedy this month at work. Every story making me even more grateful for what I have. There are parents here in the capital region of New York that no longer have the chance to hug their children. 20 families in Newtown, Ct are struggling with how to move on, how to celebrate Christmas without the people they love the most. These stories have weighed heavily on me.

A tragic car accident took the lives of two local high school seniors. I cried just reading the hundreds of tweets and seeing the community come together to say goodbye. Days later I was wiping away tears as I stood in the back of the funeral for a fallen Marine. Then a senseless act of violence erupted on a Friday morning. I was filling in on the anchor desk. During the noon hour, the horrific details of the shooting at Sandy Hook elementary school were reported. The producer in my ear saying 12 kids...18 kids...20 kids, the changes by the minute almost unbelievable. It took everything I had inside me not to cry. My voice cracking as the death toll continued to rise. It was hands down one of the hardest days I have had on the job.

We are now one week away from Christmas. It is supposed to be the most magical times of year. I look at both of my beautiful girls and want nothing more than to give them the best holiday ever. I want them to be excited for Christmas...to have that same feeling I had as a child. If I have realized anything in the recent weeks it is that you have to live for these moments. You have to enjoy the special times and make wonderful memories. I don't want to take any minute for granted.
The two lights of my life!

Thursday, November 29, 2012


Avery is 6 months old now! Time sure flies when you are having fun and we are having lots of fun. It has been such a different experience for us. It almost seems like Avery is growing twice as fast. We were convinced at her 6 month visit this week that the doctor would tell us we have a big girl on our hands. Avery has cheeks you can't resist, chubby little legs and is already wearing clothes Ella wore at 18 months (I should note they are 6 mo. clothes). She is growing perfect and on a nice curve, but still petite. She is 14.8 lbs and 25.5 inches tall.

Now that Avery is starting to sit up and loves to play, Ella has taken a greater interest in her sister. She is the only one who can consistently get Avery to crack up with a deep belly laugh. There are some afternoons that the two of them can not stop laughing. It is the BEST thing to hear.

My sister Erin and me.
They are both too young to understand it, but I tell them every day how luck they are to have a sister. I am the oldest of two girls. My sister is my best friend. I talk to her every day (usually multiple times a day). She is my confidant, sometimes my boss, my harshest critic and my biggest supporter. She holds a master's degree (2 actually) in education and special ed and has been a tremendous help in navigating the waters when it comes to getting the best services possible for Ella. She is really good at being the person to calm me down when I am upset/sad/mad/frustrated. She even reminds me often (all the time actually) that she was the one to encourage me to write about our life and raising Ella and now Avery. I am so grateful I took her advice. The support I have had since I started blogging has been tremendous.
Ella and Avery watching morning
Tinkerbell. Aves looks skeptical!

I hope that Ella and Avery can have this kind of relationship. I often wonder how Ella's diagnosis will effect Avery's life. We have no idea what the future will hold. We don't know what kind of support Ella will need throughout school. All we can do is live in the moment and continue to be so grateful that Ella is doing very well. What I DO know and I can help mold is how both girls treat others. I like to believe that having a sister that has to deal with challenges many other kids are not faced with will make Avery a more compassionate person. In turn, I have already seen how Avery motivates Ella. She wants to help out all the time. She loves to help feed Avery and she thinks its hysterical to copy her whether it's making raspberry noises or rolling around. When the stroller comes out, my little assistant is right there to push her sister along!

 I hope that they can help each other throughout life -- the good and the bad, and be as good of friends as Erin and me.

   "For there is no friend like a sister, in calm or stormy weather, to cheer one on the tedious way, to etch one it one goes astray, to life one if one totters down, to strengthen whilst one stands." - Christina Rossetti

Monday, November 26, 2012

It's All About Early

Christina and me...don't we look well rested ;-)?!
In the news business, we move around a lot. I have lived in four cities in the past 12 years. There are people that you meet along the way that you stay in touch with forever. I have been in Albany for five years now and gotten to know some very nice co-workers. We often spend holidays together and always seem to work strange hours, so getting along with these people is usually pretty important. I believe now more than ever that there are certain people that come in your life for a reason.

In the early morning hours, I have been fortunate enough to have a wonderful friendship with Christina, our morning anchor. We were both pregnant at the same time three years ago...and working nights. Ella and Christina's son Luke were born just five days a part. They both decided to surprise us with early deliveries and they have continued to surprise and amaze us for more than three years.

Luke has down syndrome and Christina deals with many of the same therapies and school stuff that I do.  It is surprising how similar our lives are. Luke is doing awesome and Christina is a tireless advocate. Tireless being the key word. We both come in at 3:30 in the morning, usually on just a few hours of sleep! What started as just a few passing conversations about the awesome progress our kids are making has developed into a morning therapy of sorts. I look forward to our morning chats in the make-up room. I always know she will just "get it". We both work these early morning hours, rush home to the kids, and deal with all the other daily issues. Whether it's how to help Ella or Luke or how to manage to get enough sleep, I know our morning chats will always be lively. Christina is always finding new ways to help our children learn and to make sure they are reaching their potential. She knows how elated I feel when Ella reaches a milestone. She can also feel my pain and frustration with the constant battles over health issues, or any other road block I seem to be facing. In turn, I hope that I can be that comfort for her as well. We have been thrown into this world of doctors and integrated learning, physical therapy, speech pathologists, shoe orthodics and special diets. The list goes on and on and we seem to always be adding something new. How many other people can discuss the best use of social stories, or how to find the right ear drops with me and then turn around and discuss the crisis in the middle east!! It's a world we wouldn't have imganied for ourselves, but have managed to (continue to) conquer.

Thank you, Christina for being a good listener, a tremendous advocate for children with special needs, a cheerleader, and a friend! I look forward to 4am tomorrow :-)
An out-take...laughing our way through the morning...
some times laughter is the best medicine!

Sunday, November 25, 2012


I have a lot to be thankful for this year. I have two healthy, beautiful little girls, a great husband, a loving and supportive family, a loyal dog, a job that allows me to do what I love AND be a mom...the list goes on and on. It is so important to take a moment and acknowledge my good fortune because it is very easy to get caught up in the roller coaster of emotions that life can dole out. I try not to dwell on the negative, although I admit sometimes it's a struggle to pull myself up and put on that smile. Right now it seems like we are in the front seat of that coaster and flying through the upside down loops! While I would love to say the ride was nearing an end, I don't think we are getting off any time soon.
Hopefully Ella will be sleeping better
after adenoid surgery in a few weeks.

In the on-going saga of Ella's ear issues, the latest chapter includes a change in doctors and a new surgery next month. We decided to switch ENT's after months of feeling like we weren't getting anywhere. The "wait and see" approach of the doctor was hindering Ella's development. She is constantly battling blockages and hearing problems. This was leading to a bigger speech delay and other learning problems. The second opinion was hopefully one of the best things we have done. The new doctor feels that Ella's enlarged adenoids (which he could see on the MRI she had 2 years ago!) need to come out. He explained how adenoids can cause fluid back up in the ears as well as speech delays, snoring, sleeping issues, even difficulty swallowing and breathing. These are all issues Ella is constantly dealing with. We have heard that her adenoids looked swollen in the past, but never entertained the idea of removing them. Jason and I left the new doctors office seeing red. We are happy that it is an easy fix and a relatively routine surgery, but we also feel like one doctors lack of action has contributed to Ella's discomfort and our frustration for quite some time. How many doctors have looked at that MRI over the past two years?? As frustrating as it is, I have to be positive for Ella and hopeful that this surgery will be a game changer for her. We'll see...she is scheduled for surgery December 13th.

As if scheduling surgery for your three year old isn't enough stress for one family, we are also dealing with MRSA (again!) and some lost/stolen/missing meds. As for the MRSA, we are on a new protocol to try and "decolonize". Ella has been treated for the superbug four times this year. We finally seem to be on the right path now to stopping her infection and preventing the spread at home. We have some new meds and we are all using an antibacterial body wash.

So happy to see this
box arrive!
Our third battle of the week was waged when UPS "lost" Ella's growth hormone. Her meds are delivered every month. They are shipped overnight because they must be refrigerated. It is also very expensive medication, so when the box never arrived Tuesday, I immediately started making calls. The box is still missing and the pharmacy had to ship out a second batch. Talk about jumping through hoops! We had to have insurance re-authorization, set up Saturday delivery and even file a police report because of the missing meds. I am very thankful the new meds came and we didn't have to worry about her missing a dose. This has never happened in two years, so we weren't exactly sure how Ella's body would react. It's like insulin to a diabetic. Ella's body is dependent on the hormone shots every night. Needless to say the stress level was a little high!

Despite all the doctors appointments, phone calls and general madness of the week, I know that I am lucky to have this life and I wouldn't trade it for anything. I have become a better person. I think I appreciate the little things a little more too. It was nice to take a moment on Thanksgiving and appreciate what the day was all about.

Friday, October 19, 2012

Quiet Concerns

I hear a lot of stories about bullying. I have even reported on a few. Jason just read about a tragic story in Kelowna, British Colombia (his home town) about a high school girl who took her life because she had been bullied so much. In a world where Facebook and Twitter, even blogging is so prevalent, bullies have a new MO. It's a world our children will no doubt deal with. As a mom, it's very scary. As a mom of a child with some developmental delays, I AM TERRIFIED. Kids can be mean. People can be mean. One of my biggest fears is that Ella will have to deal with  some kid at school who teases her for walking a little slower than the rest of the group or mocks her because her speech might not be perfect. Right now she is so innocent and blissfully unaware of any of these differences. 

I have been thinking about this a lot this week. Ella had a follow up visit with the ENT where they checked her tubes and did a hearing test. She didn't pass the test. This isn't the first hearing test that has come back poorly. Before she had her tubes, we knew her hearing was compromised by the fluid in her ears. After the tubes, her hearing was better...she had a normal result on her hearing test. 
Right now she has an ear infection and a tube that is blocked. She can hear, it's just more like what she hears is like what you would hear if you covered your ears or put in some ear plugs.  The doctor said she may have some nerve damage and permanent hearing loss. First we must clear up the infection and then figure out our next step. I am trying to not get ahead of myself, but the "what if's", and "why's" are sometimes hard to keep from my mind.

We will do whatever we can to help Ella hear better. There are a lot of options and a hearing aid may be one of our options. I know hearing aids can be very discreet, but it's just one more "difference" Ella would have to deal with. It's one more thing for some mean kid to point out. I know that I can't protect her from everything. I know the wrong clothes or hairstyle can make someone just as much of a target to a bully. It still doesn't stop my worry. It is a concern I will quietly carry with me forever.

Our hope is to raise Ella and Avery with confidence and a relationship with Jason and me that will allow them to deal with whatever is thrown their way. We want them to be able to talk to us about anything. We will teach them to stand up for themselves. We will make sure they know the difference between right and wrong and that words can be hurtful...sometimes even worse than actions. We know we will never stop bullying, but we will empower our girls to be their best selves. 

Wednesday, October 3, 2012


Ella and Avery practicing some tummy time!

What is normal? According to dictionary.com, normal is defined as conforming to the standard or the common type; usual; not abnormal; regular; natural.

A woman recently asked me if Avery was "normal". The question, I know was in regards to what we have dealt with in Ella's development. It still caught me off guard. I like to give everyone the benefit of the doubt. I am sure the woman was not intending to insult or offend me. I politely responded to her saying, "both my girls are normal." She went on to sheepishly clarify herself saying, "but she's doing everything on time, right?" I again politely responded to her saying, "both my girls are doing great."

The conversation is stuck in my head. Yes, Avery is meeting her milestones on the more typical timeline. It's exciting and a totally different experience for Jason and Me. It is also something we are hyper aware of. Everything seems to come so much easier, tummy time, rolling, eating solid food. Avery's development has highlighted some of Ella's delays early on. I admit, sometimes I find myself sad that everything was so much harder for Ella.

Guidelines and milestones are important, but they don't define my children. Ella is healthy, happy and normal. Avery is too! They are also as individual as they come. Everyone has a different path in life. It may have taken Ella a little longer to walk, but she got there. Avery is going to do things her way too. They are sisters and it is easy to make comparisons. Sometimes they look alike. Sometimes Avery reminds me of baby Ella with her giggles. They are also very different too. For example, Avery sucks her thumb. Ella was happy with a pacifier. Ella wasn't a big eater. Avery LOVES her food and does not miss a bottle (not even at 2am).

Avery enjoying/wearing her sweet potatoes!
Avery is a crier. Ella rarely made a peep. Ella transitioned to her crib easily and slept through the night early on. Avery still likes to wake up at least once a night and probably would have slept in her bassinet until she is 16 if we let her. (If you couldn't tell, the transition to crib and sleeping have been an issue this week!) I could go on and on comparing the two. I think it's natural as a parent, but I also love the uniqueness of both Ella and Avery. I enjoy and celebrate every milestone and acomplishment they each make.

My conversation with that woman was just a reminder of what my "normal" really is. My normal is waking up for work at 3am, balancing being a mother of two, dealing with doctors, medications and shots, consoling a cranky baby in the car, spending my afternoons laughing with my girls, sharing a bowl of ice cream with Ella and Jason after a long day, and the list goes on and on. I LOVE my normal. I may have to answer questions like that woman's forever. I am okay with that. I hope that I can instill confidence in Ella and Avery as well, to give them the chance to proudly stand up for themselves and one another too. I want them to see the good in people and realize that there are lots of different kinds of "normal". I want them to LOVE their normal too.

Monday, October 1, 2012

The Highs and Lows...

The first blog I ever wrote was titled The Ride of Our Lives. It was very clear, very early on in Ella's life that she was going to keep us on our toes. I am happy (and I admit, a little frustrated too) to report that she is doing just that.

There are so many emotions we go through. It's the elation over a new word, a glowing review from a teacher, and a clean bill of health that give Jason and me great joy. The highs of life! Then...it's the unknowns that come with chromosome 18, or the constant worry over medications and doses that send us back down. Jason and I have learned to deal with the roller coaster of emotions, for the most part.

We are being tested once again. After a great visit at Children's last week, Ella's lab results tell a bit of a different story. She is still doing great and appears on all fronts to be healthy and happy. I think this is why hearing news that her thyroid and growth hormone levels are very low is so upsetting. The email from the doctor began, "Her labs are a little confusing..." The instant response from Jason and I began, "here we go again..."

It's been almost two years since Ella was diagnosed with hypopituitarism. I would like to think that we have become pretty in-tune to Ella's needs. We can usually tell when she is low. She tends to be tired, irritable, her skin is dry and her appetite wanes. We haven't seen any of these behaviors at all. In fact, Ella has been energetic, growing quickly and very happy. So I guess Dr. Holm's "confusing" is appropriate.

I returned to Children's Saturday morning with Ella to have another round of labs drawn. Fortunately I had made the trip to my parents house for the weekend and just had a short drive to Boston. This means we should have results within a day or two. We have been through this before. Last year, we switched Ella's medication a number of times. The difference this time is the approach Dr. Holm is taking. She is far more reserved when it comes to changes. This is why she ordered more blood work before deciding anything. We are hoping that the latest growth spurt is what's throwing everything off balance. Results to follow....

Monday, September 24, 2012

BIG Jump!

Nine months ago, I am not sure I thought I would be writing this....two years ago, I know I didn't think I would write this....Ella is GROWING, and at light speed!
Stand up TALL!
After struggling with a correct diagnosis and then wrangling with doctors and doses, it seems we have finally found a combination that works great. A combination of not only medicine, but doctors too. Ella had another check-up at Boston's Children's hospital on Friday. The results are still unbelievable to me. Our little Pnut is now 30lbs and 36 inches!!!! This not only bumps her up on the growth curve, it puts her in a much closer range to her peers.

I was not surprised that she has grown. I figured that out when all of her pants were too short, her shirts were creeping up her belly and she jumped from a size 6 shoe to an 8. I just didn't realize how much she has grown. Since her well visit in June, Ella has gained three pounds and two inches. She has put on 10 lbs since January! We celebrated her jump ONTO the growth charts in June when she landed in the 2%. Now she is in the 8.7%....still tiny, but catching up quickly. Jason and I don't care all that much about the numbers and percentages, but it certainly puts it all in perspective.

We had a great visit at Children's. Along with the good news on her growth, it seems we have finally stabilized her thyroid medication. Her doses were changed so often at the end of last year, she went from being too low (hypothyroid) to way, way too high (hyperthyroid). This wreaks havoc on everything (growth, appetite, mood, immune system). Now that Dr. Holm has followed Ella for 9 months and had several consistent blood draws, she feels confident turning her attention more to her growth hormone dose. Ella is getting the highest dose possible for her age and size. The challenge with growth hormone therapy is finding a dose that replaces what the body is not making. We don't want her to grow too fast. The good news is, we may be able to lower her current dose. However, like the thyroid medication, it will have to be done gradually. We will know for sure once the lab results are back. Dr. Holm also ordered a bone age x-ray. Here's another bit of perspective...when Ella had her first bone age x-ray when she was diagnosed (at 18 months), the results showed her bones were the age of a newborn! We should have all the results back later this week.

Perhaps the best news of our visit was to hear the Doctor say Ella is healthy. She is very pleased with her progress, not only her growth, but overall development. As long as all the labs come back normal, we don't have to go back until January.
Cousins! Ella is the "big" girl in every sense now :-)

Friday, September 14, 2012

Lessons learned....

Ella's first day of preschool
September 5, 2012
School, swimming, and now ballet! Ella has a busy schedule for a three year old. Preschool is going very well. She gets great reports from her teachers and therapists. She is enrolled in a full day preschool program. She also gets all of her therapies at school...PT, speech, OT, and even music therapy. It's been an adjustment for me more than her! I am so used to having the therapists in my home and being an active participant in each session, so to not see her doing PT or hear her practicing with the speech therapist is hard. I have been getting lots of reports from everyone and so far so good. Just yesterday her occupational therapist told me that she sees a big change in Ella's confidence in only a week. I was so happy to hear that she holds her own in the classroom and is very involved with every activity.

While Ella is doing a lot of learning and growing, I am learning (or being reminded at least) of some important lessons myself. I learned once again this week to NEVER underestimate my daughter.
I learned that a few extra/missing/mixed up chromosomes do not define Ella.
First ballet class!
September 13, 2012

I was so excited to bring Ella to her first dance class. She looked so cute marching right into the studio to sit with all the other little girls dressed in pink. I was also a nervous wreck....worried that she wouldn't be able to keep up or that the other kids/parents might question Ella. It's an insecurity that I have every so often. This was the first time I was putting her in a group with "typical" kids. Most of her activities until now have been through early intervention and the toddler group special ed program. I know that she is not as coordinated as many kids her age and her speech is not as good yet, but I also know how far she has come. I am so proud to even be able to take her to this class. The smile on her face when she was with the other kids was very reassuring. Ella has no idea that she can't run as fast or doesn't have the strength to jump as high as these other kids. She has no idea what "low tone" is, but it was clear to me when she was in the group that she fit right in.

That's Ella standing up...getting ready for her turn
to tumble!
I still cried though. I cried enough to send me to the bathroom so that the other parents wouldn't see me. I am even a bit embarrassed to admit it. I wasn't crying because I was upset. I think they were a mixed bag of tears. I was proud to watch my daughter at her very first dance class and sad at the same time that I would ever doubt that she would be able to handle it. The trigger was when the teacher asked her what her name was, she spoke up and said Ella. The teacher didn't quite understand her though and thought she said Anna. Ella said her name a second time and the teacher looked up at me. I quietly corrected her and said Ella. It is such a silly thing to get upset about.

There were other little girls that were shy and didn't want to say their name. Some even left the room crying. Not Ella. She made it through the entire 45 minute class....she tumbled, twirled and tapped. She followed along with the teachers and seemed to have a great time. I couldn't help but be emotional. I think the tears were my way of relief from all the built up anxiety I had. Clearly it was a lot of worry for nothing! I don't care that the teacher didn't understand her. She said her name (and pretty clearly too, I thought!) All I want for my daughter is absolute happiness and to never be looked at as different.

On this day, Ella didn't look different at all. She looked beautiful, confident and happy!

Thursday, August 30, 2012

Forever Grateful

Today is a big day in our house. With mixed emotions, we are saying goodbye to our wonderful early intervention therapists. Ella is now a graduate of the program...a proud and successful one at that!

It was just about three years ago that I received that first phone call from Jamie, our amazing service coordinator. She outlined the program and assured me that she would be working with us every step of the way on this crazy journey. Jamie did not disappoint and went above and beyond her job to make sure that our little girl had the best care. At one of our final meetings recently, she recalled how Jason and I looked as if we were in shock the first time she met us. We were. In fact, I am not sure shock is even the right word. Our worlds were turned upside down when we received Ella's diagnosis. This was not how our first experience as parents was supposed to be. I still tear up when I think of that day in the NICU and the grim statistics the genetic councilor rattled off to us. By the time we met Jamie a few weeks later, I was still numb. She gathered an incredible team for us and helped us design a plan that would benefit Ella.
PT at the park with Jen this summer.

Jen, our PT was the first therapist we met. She has always had the most incredible patience with Ella. There were days when the entire session would consist of screaming. More recently, she has handled our stubborn toddler like a pro. She helped Ella reach so many important milestones, rolling, sitting, standing, walking, running, jumping....all the things, at one time or another I wondered if she would ever do. I am going to miss her visits twice a week, but I am thrilled that she will still be able to check in on Ella at school.

Michelle joined our team about a year into our EI journey. She is Ella's speech therapist and has been a tremendous resource to Jason and me. She helped us navigate through Ella's ear issues. She taught us all sign language (the basics at least). We learned how complex speech really is and we have a solid foundation for Ella. She is getting more words every day. Michelle pours her heart into her work and it shows. She loves Ella so much. We will truly miss seeing her....thankfully Facebook will keep us connected!

While we won't be saying "goodbye" to Linda, Ella's pool PT, I would be remiss not to mention her. She has been a huge part of Ella's physical development. Every milestone she met, she accomplished in the pool first. Linda's stretching and pool exercises complimented everything Jen was doing on land. We are thrilled that Ella will continue in the pool as part of her Preschool program. Not only does she love the water, she loves to see Linda every week. It's a challenge to even make her wait her turn to get in the pool.

The last member we added to our team was Jessica, Ella's special educator. We met Jess last fall when Ella started at Unity. She has helped Ella become a little social butterfly. She patiently spent three mornings a week "hanging out" with Pnut, helping her learn her colors, numbers, shapes, songs, etc. Like Jen, I am sure there were some days that seemed impossible when Ella was in a mood, but she always stayed positive and gave Ella a great foundation to take into preschool.

I have tears in my eyes as we get ready to move on to our next adventure, but they are happy tears. These women have all played such a huge part in Ella's life as well as Jason and mine. They helped make my daughter the awesome little girl she is today. I can never thank them enough, but I vow to be a strong advocate for Early Intervention. It is the least I can do to show my sincere gratitude! While Ella may not remember this time, she will always know that she had nothing but the best :-)

Saturday, July 21, 2012

Give It A Shot

For more than a year now, Ella has been getting daily shots of growth hormone because of her hypopituitarism. Here's a link to a blog about the condition, hypopitui...what?

The growth hormone has had a tremendous impact on her life. She is growing at leaps and bounds and has gained so much strength. The shots are something she will have to continue for the rest of her life in order to grow normally. She will even require the injections into adulthood to help with her metabolism, etc.

She has the routine down pat. For the most part, she handles the shots very well. There have been plenty of nights when she actually sleeps right through the quick stick. Of course, she has nights when she knows it's coming and just isn't in the mood (luckily it's a rare occurrence). She has been particularly curious lately, so I have made an extra effort to keep her as involved as possible. At 3 years old, she now helps give herself her own shot! I was shocked to see her do it the first time I offered! I still have to do all the measuring and prep work. I will actually stick her as well and then she presses down the plunger in the needle to actually give the injection.

She's a pretty amazing little girl (but of course we already knew that!). I still cringe to give her the shot every night and I could NEVER give myself a shot. Way to go Ella...you continue to surprise us every day!

Thursday, July 19, 2012

Best Summer Ever!

Ella and Avery celebrating the 4th of July!
I can't believe we are more than half way through July...and I am just getting around to a new blog! It's all for good reason, because I have been busy having the best summer ever! Words can not describe how much I adore being home and spending every day with my girls. It is such a special time for me and I am determined to enjoy every single moment. I can't imagine loving anyone or anything in the world as much as I do my daughters. Tomorrow will mark eight weeks since Avery was born. It has been the FASTEST and HAPPIEST eight weeks of my life.
Enjoying some pool time with Pa

We have spent our time going to the pool, the playground, taking long walks, checking out the farmers markets, reading, singing and just having something fun to do every day. Ella is still going to school three mornings a week. It is good to keep her in her routine, but I can't wait for the clock to strike 11am and I can pick her up! Since she is still going to school, I have had a nice opportunity to sneak in a little early and see her in action with her teachers and friends. I am so proud of her and how far she has come. Just yesterday, I saw her singing and signing all the songs and taking the lead with her classmates. She really seems to enjoy being there and having fun in the classroom.

As for little Miss Avery...she is a Mamma's girl! She is getting so big and growing into her personality. She is full of smiles for us when she wakes up every morning. She LOVES to stare at her big sister. She HATES the hours of 5pm-8pm. That's when she cries and cries and cries, haha. She loves being outside and hanging out in her stroller. She is doing great with tummy time. She is a good eater and a great sleeper. She is a perfect addition to our family!

Tuesday, June 26, 2012

Ella Tapp Is Awesome!

What a crazy, fun, sleepless, busy month it has been...and I wouldn't trade a moment of it for anything. Avery is now one month old and growing like a weed.

In fact, it seems like there is a "growing" competition in my house these days. Both girls are getting so big. We celebrated Ella's 3rd birthday on June 15th. I can't believe my baby is 3!!!

I started writing this blog almost a year ago for a number of different reasons. I wanted to share our experiences with Ella's diagnosis and development. I also wanted to have a record of this time and something that I can share with Ella when she is older. I want to remember the important milestones, etc, but I also want to be able to look back at the blog and smile and remember the fun moments that we shared as a family. I have done a lot of reflecting on the last three years recently. The time has gone by so quickly. I keep telling both girls to slow down a little....I want to take a deep breath and enjoy every moment. As I think about the day Ella was born and the stressful times we dealt with, I am even more grateful for all that we have today.

I decided today's blog would be special for Ella...and every birthday blog to follow for both of my children. A love note of sorts for the two most important girls in my world!

Dear Ella,

You are 3 years old now. A big girl in every sense. You continue to amaze and inspire us every day. I love your new independence and determined personality (even if you are fighting me about hair and clothes and what to have for a snack!) You have had quite a year. You not only got up and walked for us, you soared! I think your new sentence (that is on repeat these days) "Ella Tapp is awesome" can truly define YOU and what you have accomplished. I am even prouder of how you have changed your father and me. We are much better people because of you. You taught us the true meaning of unconditional love. You made us fighters, advocates -- you gave us a reason to speak up and make sure you have the very best there is in every aspect of your life. Today you woke us up at 6am. You were ready to start our day. With a big smile and sparkling blue eyes you crawled into our bed. The next thing we know....you were jumping on the bed! It's this new daring side that excites me. If someone told me a year ago, that this would be the start to my day, I most definitely would have been skeptical. I have learned though, that there is nothing that you can't or won't do. I look forward to the next year and what I will be writing about. One thing I know for sure is, it will be AWESOME! I love you, Pnut!

Tuesday, June 12, 2012

On The Charts!

Ella is just a few days away from turning 3! It's hard to believe that she is growing up so fast. She really is a BIG girl now. Not only is she handling her big sister duties very well. She has gained a new level of independence now that I have my hands full with a new baby. She has also grown a lot taller and stronger. In fact, Ella is finally on the growth charts! At her recent three year old well visit we learned that our 27 lb 34 inch toddler is in the 16% for weight and the 2% for height. It may not seem like much, and yes she is still a Pnut, but she is growing and catching up. It's been a tremendous year for Ella.
Ella loves to ride her bike!

Ella took her first steps just about one year ago. I will never forget the day. It was June 14th (the night before her birthday). We had just gotten home from the pool and she was excited to see her balloon still floating in the living room. That balloon and a little bit of cheering from Jason and me was enough for her to take those first solo strides across the living room. I can honestly say it was one of the happiest days for us. I cried at the sight of her doing it all on her own. She had worked so hard for this. It was hours of time with Jen and Linda (our awesome PT's) that had finally paid off.

Today Ella is doing all the things a girl her age should be doing. She runs, jumps, climbs and pretty much finds every way possible to get into trouble. She has even shed some of her cautious ways as we have found her standing on her toy chest, jumping on the bed, and even climbing the tall slide at the playground.

As we get ready to celebrate another milestone with her birthday, I am excited to think about the future. I can't imagine what she will accomplish next. I know she has such a bright future and so many more exciting moments :-)

Caught climbing the toy chest!

Friday, June 1, 2012

In 'Da Club

One week ago today...at 9:44 pm the Tapp's officially became a family of four! Avery Jessica Tapp was born healthy and happy at Albany Med to the tune of 50 Cent's "In Da Club". She was almost as impatient as her sister and decided to surprise us with an early arrival. While it wasn't exactly how we thought our Friday night was going to be, we couldn't be happier. Our doctor was awesome and knew that we had been through a lot with Ella's delivery. She made every effort to make this time around calm and memorable.  We had music playing in the OR (hence the rap tune on the radio ;-) ), Jason was able to take some great pictures and their was a calm, happy mood all around.

When we heard that first, loud cry, a sense of relief filled both of us. Avery tipped the scales at 6lbs 7oz and was 20 inches tall. Not to be outdone by her big sister, she did have a few curve balls for us. After a quick trip to the NICU (because of some concern over some extra fluid in her lungs), she was back down in my room. The NICU was more of a precaution than anything and while it was really upsetting to hear that she was going up to the place where we had so many difficult memories from our time with Ella, I am relieved to know that she was getting great care. We left the hospital on Monday as a party of four. I can't even express the feeling of happiness that drive brought me. It is everything I have hoped and dreamed about for the past nine months.

Our first week at home has been pretty amazing. Avery is the perfect addition. She is a good baby...and certainly has her own feisty little personality! Ella is a fantastic big sister. She has made the transition better than we could have hoped. She loves to help with diapers and thinks it's hilarious to tickle her sister's toes. I can't believe how BIG my Pnut feels now. She has gone from my baby to my big girl over night.

Jason and I are doing great and learning how to be parents of TWO! We appreciate all of the kind comments, phone calls, text messages and well wishes we have received. It's an overwhelming feeling to have so much love both for our family and from our family and friends.

Thursday, May 31, 2012

Celebrating Jess

How do you explain to an almost three year old what today is? How do you tell her that someone who loved her so much is not with us?

Today would have been Auntie Jessica's 29th birthday. It was a day filled with a lot of emotion...tears, memories. A day we have been thinking about since January 15th when Jessica became our angel. Jason and I have spent so much time talking about how important it is for us to share our memories of Jess with Ella and now Avery. We want them to grow up knowing how special their Aunt was...how much Jessica ADORED Ella and how excited she was for a new niece. It is not fair that she is not here today, not here this week to share the news of a new baby, not here to enjoy new memories with.

Jason and I wanted today to be more than just tears though, so we planned to celebrate Jess. Ella helped me make cupcakes.

We frosted them pink and yellow (Jess's favorite colors). Each girl got a rose and we wrote messages on balloons to send up to heaven.

It's a new tradition we plan to carry on every May 31st. As the girls grow, we hope to be able to share with them our memories of Jess and make them feel like she is always with us. Our girls have the best guardian angel their is. We promise to raise them with the kindness, feisty attitude, and love that Jess taught us all.

Happy Birthday Jessica. You are missed so much every day. We love you...always in our hearts!

Monday, May 21, 2012

What a difference....

The weather was beautiful this weekend and we had a few things we wanted to do....enjoy lots of time outside, and pack in lots of family time. The count down is on to baby, so we are soaking in every moment we can before things get a little crazy ;-)

We made an impromtu trip to Hoffman's Playland on Saturday. It's a small amusement park for little kids not far from our house. We have been once before -- last summer at the urging of Michelle (Ella's speech therapist). What a difference a year makes (less than a year actually!). Ella was SOOO excited to see the rides.
I literally had to hold on to her before
she busted down the gates to get on a ride!
She was so impatient just waiting in line for tickets and had to be the first on the rides. During our first trip last year, she was certainly happy, but pretty passive about everything. She smiled on the rides and seemed to enjoy it. I KNOW she enjoyed this trip.

Look Mom, I can fly!

As fast as one ride ended, it was on to the next one and she just kept asking us for "more, more". She drove her boat as fast as she could and bravely hopped on the plane ride....flying solo. The smile on her face is an image that means so much to Jason and me.

We are so lucky to have such a happy girl in our lives. Where she is today and the things she is doing are honestly something I always hoped for, but I must admit that in some of those low moments and days when everything seemed to be going wrong, I had doubts.

I remember right around this time last year, wondering, hoping, praying she would walk. Today she not only walks, she runs, climbs and jumps! She knows her colors and letters and animals and is starting to talk much clearer. It is truly amazing! She wants to badly to exert her independence and has sparked quite an attitude. I even said to Jason just yesterday (as Ella was emptying the water cooler for what seemed like the 20th time), remember asking for this trouble?!
Things are certainly going to get interesting as we welcome the new baby. We have already caught Ella "hanging out" in the bassinet in the baby's room and very curious about the crib coming back and the little diapers set up. I think after a little adjusting, she will do just fine. She is such an easy going kid and she loves to be a helper, which is exactly the role I see her taking on when the baby needs to eat or be changed. Two weeks (or less) and counting. June 6th will be here before we know it....can't wait!

Friday, May 4, 2012

The Traveling Tapp's

In just a few hours, we are packing up the car and hitting the road for Boston. It's a trip we make all the time. This trip is a little different though. It will be the last time we will drive down I-90 east before the baby is born!

 I remember the first trip back to Woburn we made with Ella.

Ella's first trip to Woburn...and her first meeting
with her Great Grandmother!
It's only a two and a half hour drive and we stay at my parent's house, so it shouldn't be a big deal, but I think it took me two days to pack and prepare for that trip. Ella was only a few weeks old and just getting out the door to run an errand was a major ordeal. It's funny how times have changed and we have it down to a science now. I am sure adding another little person to the mix will shake up the routine all over again (expect to see a return of the Tapp train wreck, Mom!)

This trip, while it's significant in that it's our last before we are a foursome...is also an important visit to Boston Children's hospital for Ella. We have a follow-up appointment with the genetic endocrinologist that we met in January. She would like to see Ella every four months and actually has lab work done every month (thankfully that can be done in Albany). Our experiences with Dr. Holm have been very good up to this point. She calls to check in every month and update me on the results of Ella's lab work. I am anxious for today's appointment because it's the first time Dr. Holm will see a healthy Ella. Our last visit was the day Ella was discharged from Children's after the pneumonia. She was still a very sick little girl and had lost a lot of weight. At the time, there were no changes made to her medications...and there still haven't been any. This has proven to be a good thing. In the last four months, Ella continues to make so much progress. She is a lot more coordinated. She has a great appetite. She has been able to fight off little colds and viruses much better and her speech has improved significantly. However, we are well aware that it's a delicate balancing act and we can expect to have some tweaks to her doses along the way.

It will no doubt be a stressful day (doctors visits like this always are...no matter how many times you do it), but it will be a day that I will remind myself constantly to enjoy. I have to appreciate how lucky we are...to have such a happy little girl, to be able to make the drive to world class hospital, and of course, to be lucky enough to be getting ready to welcome another lovely lady into our lives. Today's little moments become tomorrow's precious memories :-)

Tuesday, April 24, 2012

First Things First

Well I have been a very neglectful blogger in recent weeks...I could come up with million and one reason's why, but there is really no good excuse. I have certainly thought about writing. I have wanted to write. I have even had time to write, but for some reason I found a way not to. I am not sure what I am avoiding. Ella is doing really, really well. In fact, life is really good! Perhaps it's my subconscious mind really just wanting to keep the good chi that has been surrounding us recently.
Ella on the plane with Jason!

There is so much to share and a lot to smile about. We are about six weeks away from going from a family of three to a family of four. While that is exciting in itself, it's really just the icing on the cake. We have had the chance to enjoy so many "firsts" as a family recently....like Ella's first plane ride. It's a big moment for any kid, and Ella will always be able to share a special story when it comes to her first flight. We went to Tampa at the beginning of April for the Frozen Four. Union's awesome season concluded with a trip to the National tournament. This was such a huge moment for Jason's career and one that Ella and I did not want to miss. This was his first trip to the tournament and it happened in his first season as a full time assistant with Union! (I told you we had a lot of "firsts"!)

 Ella was such a great traveler. She wasn't phased at all by the plane and behaved so well throughout the entire trip. I was able to get time away from work....by agreeing to work while I was there. I sent back stories every day and even did live shots the day of the game.
Game day live shot!
It was so much fun to be able to cover such a great moment. We also even had some time to spend with our dear friends, The Taylor's who just happened to be in Tampa on spring break the same week. We snuck in some beach time and a few dinners. It was the perfect treat!
Ella and Samantha at the beach :-)

We've even had a moderate break from doctors and therapies and everything else. It has been a welcome break...and one that seems to have refreshed all of us. Between traveling, holidays, and school vacations, we have been off more than on with appointments, but it hasn't set us back which is a huge bonus for Ella. It's a great indication of how strong she is getting and how much she is catching up. Ella only has a few months left before she transitions into the preschool program. We are back on schedule now and ready to get the most out of her final summer in the EI program. Her paperwork and preliminary transition plan are set. Preschool here we come in September!

The recent weeks following the end of the hockey season have provided some wonderful family time. It is great to have Jason home more to soak up every minute we have before life becomes (blissfully) hectic with a new baby. Ella continues to surprise us every day with a new word or a new dance move. She is such a happy girl. I can't wait to see how she adjusts to being a big sister!