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, 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!'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....