Sisters!

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
 

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!

Thankful!

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.

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. 

Normal

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.

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....

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 :-)