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 :-)

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!

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 :-)