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.