McFly? Hello? Are You Listening?

I know. It's horrible that I even just wrote that as my title of this blog, but in all honesty, that is what I want to say to Christian at least 3 times a day. Of course, that's in between playing the "Is it his age or hearing loss" game that I so hate. I am so frustrated.

All of the sudden it seems like Christian went from hanging on every single word I had to say to not caring at all. It was almost like switch was flipped on his 4th birthday that made him totally ignore me. I just sent an email to his teachers and in school audiologist to check his equipment. They probably are going to think I'm this crazy Mommy who can't come to grips with the fact that this is the start of 14 more years of him ignoring me in my house. It's just odd behavior for Christian, who usually makes eye contact and nods, and reaffirms what I have said.

I've also noticed some little changes in his personality. He's grown much bigger emotions, and now, more than ever, his sense of humor is exploding. I think he is going to be quite the clown, which makes me happy. I love how he is silly. I love how he giggles.

Fingers crossed that the foggy listening over the past couple of weeks is just a phase...or a dirty microphone cover!

SCHOOL'S OUT FOR SUMMER!

What an absolutely amazing year full of fun friends and wonderful teachers. As I was setting up the Frog Class party while the kids were down in the gym getting ready for the Community Meeting, I just stepped back and took it all in. In this beautiful classroom with so many things to explore and learn about, Christian's life changed. There in that classroom he learned how to master the /f/ sound. He also learned how to negotiate over toys with friends. He learned about the solar system. He played Spiderman everyday. He laughed, and sometimes cried. He read books, played pirates, planted gardens, and built towers. He told stories, was line leader, and also on garbage patrol. He played the trumpet, french horn, and even the banjo in that classroom. He danced and sang with his friends. Countless raisins and Goldfish were snacked on. 

I know I've bragged before about just how AWESOME his teachers were this year, but I have to say it again...THEY WERE AWESOME. We were beyond lucky to have such a committed, passionate, bright, energetic and FUN teachers for our little boy. On top of it all, they all were experts in educating a child with a Cochlear Implant. They advocated and cheered him on every step of the way and supported our family in our never-ending fights with insurance companies, as well as being fabulous liasions with our school system. I honestly am going to miss seeing them everyday. 

From Top to Bottom: Christian's in-class SLP, his in-class Educator, and his Audiologist. WHAT AN AMAZING TEAM!!!!!

I know that Christian had a blast this year with all his friends. He has developed into a silly, social, and energetic little boy who can't get enough of his friends. I hope he remembers his year as a Frog with just as much happiness as I do. I know  I will always remember his year as a Frog as the year that gave him his foundation and his confidence. 

How Far We've Come...All The Hard Work

This is by far one of the BEST videos that I've captured over the past 2 years. This was our daily routine, a little of Mommy Speech Therapy everyday at our kitchen table. 

A Beautiful Gift--Looking Back at 6 Months Post Activation

This video was taken 6 months after Christian's Cochlear Implant activation. He was just about 20 months old. I remember this day like it was yesterday. I remember feeling my heart almost burst with joy listening to Christian's voice. This was such a moment of clarity for me, as I knew that he was going to be ok.  All the uncertainty was replaced by a sense of wonder. 

How Far We've Come...

As we approach Christian's 2nd Hearing Birthday this week it's hard to not be completely in awe of just how far Christian has come in 2 short years. Over the next few days I'll be highlighting some of my favorite videos and pictures from our journey. 

This is one my favorite early videos. Taken just after Christian turned 1 year old, we were well into our candidacy process for his Cochlear Implant. At just 12 months of age, glimpses of the talkative and expressive boy that we know now are evident. I also just love this video as it shows how Christian used his signs AND words together, further showcasing how our family saw just how sign language truly helped develop Christian's spoken language. While signing is reserved for special situations and is rarely used on a day to day basis, it will always have a place in our home and our history.

Time for More Musings

When I started this blog, I intended it to be a place for our friends and family to catch-up on our life as new parents with Christian. It morphed into a journal where we would chronicle our journey with Christian and his hearing loss. What was once a place where only close friends and family would gather, slowly turned into my greatest resource into the D/HOH and Cochlear Implant world. I met many other families, especially dozens of amazing Moms, who were great sounding boards, resources, and sources of comfort. These Moms became my friends. We call each other, keep up with our kids' progress, and continue to support one another on our journeys.

In addition to a gathering place for my Cochlear Implant families, I learned my little blog was being visited by families researching the implantation process. It was picked up by several other D/HOH bloggers, and my hits per week jumped from the hundreds to the thousands. I learned that my little online journal was actually a RESOURCE and reference point for other families and individuals coping with hearing loss. I was flattered, but a bit nervous. I put a bit of pressure on myself to ensure that the information on my site was informative and useful for families going through every stage of their journey from diagnosis to implantation. I made a conscious decision to change the focus of the blog from just random musings about our life to thoughtful and resourceful posts regarding raising a kid with hearing loss. I truly was worried that the random little tidbits and thoughts on our life would cloud the messages I was trying to convey. And I can honestly say that every post truly is written knowing that I could touch a family coping with their child's hearing loss.

So, fast forward a couple of years. We added a beautiful baby girl, Lily(who happens to be hearing), and Christian will be celebrating his 2nd Hearing Birthday in just 2 short months. While our lives are not completely consumed by therapy appointments and the stress of the early stages of diagnosis and implantation, we still have so much more going on that I often have the urge to write about, but don't. Well...that is now going to change.

While I can't promise that everything will be directly related to Christian's hearing loss,I can promise it will be focused on our family as a whole (which is ALWAYS focused on Christian's hearing loss). Now, don't worry. I promise that it won't become a site that talks all about baby puke and poop and the benefits of homemade baby food. I just hope that my readers welcome the posts that may be a bit "off-topic" and use them as a way to further understand our Cochlear Implant journey.

You Gotta Have Faith

I grew up in a traditional Catholic home, attended Catholic school, and was raised in a family where our Church was a center of not just my community, but of our family. I never doubted my faith, and always felt firm in my beliefs. That is, until we heard the words "Your son is Deaf". I grieved, and took my anger out on my faith, and on my Lord. I cried and asked God why HE would do this to my family? Why did this happen to us? I mean, if YOU REALLY LOVED ME, WHY would this happen? I became angry. I neglected to look at all the blessings in my life, and instead was so angry with God.

Underneath all my anger, my faith still glimmered. While I was angry, I wasn't ready to abandon my faith. On Christian's activation day, I remember clearly feeling a sense of calm. I remember sitting in the lobby of Johns Hopkins' Listening Center praying to God "Ok, this is all up to you. I'm letting it go, and you can guide me". That day, Christian repeated his first two sounds using his Cochlear Implant. And I knew that God was listening.

Since that day, I've learned to rely on my faith for the tough moments in our journey. At least once a day, I repeat my little prayer "Ok, this is all up to you". I find myself constantly thanking God for all of Christian's success, for my beautiful babies, and for the strength He gives me everyday. What could've broken my faith completely, instead made me a stronger and firmer believer.

I wanted to share this video of Christian singing Jesus Loves Me---most traditional Catholic Hymns are a bit tricky for little ones to learn (I am the Bread of Life, hello?!), but this will do. If this isn't a sign of prayers answered, I don't know what is.
(Please disable the music on the right side of the blog)

Big Boy Changes

This summer has been full of transitions for Christian. The biggest being that he has to be patient since Mommy has to share her time between him and his little sister. Last night when I was organizing my scrapbooking gear that I plan on bringing to our beach vacation (what else can I do at night other than drink margaritas on our porch?), I started making a list of all the little things that have changed for Christian since he got out of school the first week of July:

1. NO MORE BINKIE! I know, I know...any SLP will tell me that I was hindering my little guy's development by letting him use a pacifier. However, to my defense, he only used it at night. I was worried about the transition, but his surgery to remove his adenoids helped make it a little smoother. Before he went to bed the first night, we told him that his doctor didn't want him sucking on anything at night because it would make his nose hurt more. He gave me the binkie, and that was that. HOORAY!

2. NO MORE CRIB! All my girlfriends in my neighborhood know what a toss-up this was for me. We wanted to keep Christian in the crib as long as possible, mostly due to the fact that I didn't want to deal with newborn sleep issues from Lily, while also trying to help Christian transition into his new bed. Well, a couple of overnight trips helped make that transition easier. He sleeps on his air mattress when we go away and LOVES it. While I was with the kids in Michigan, Chuck converted the crib to a big boy bed. AND HE LOVES IT

3. NO MORE GOOPY NOSE! We are beyond pleased with the results of Christian's adenoid surgery. Poor kid has been walking around since October with the crusty nose. He's sleeping better. He's breathing better. And his face doesn't have boogers all over it. Thank God.

4. Progress on the Potty While we're still struggling a bit, Christian has made MAJOR progress on the potty. I know when he's reading this blog archive when he's 16 he'll be mortified that I've chronicled his bathroom habits, but it's been such a big deal in our family that I feel like I HAVE to! We've gone from not using the potty at all, to using it about 75% of the time for #1 and about 25% of the time for #2. He runs to the potty for #1, and always tells me if #2 has happened, or if it's "Too Late". He's used public restrooms, and has started waking us up in the morning to make his "pee pee". I hope by Thanksgiving that I only have one kid in diapers....

All of these transitions have impacted Christian's speech in a very positive way. He's slowing himself down and catching articulation errors that in the past I had to remind him to correct. He's consistently speaking in at least 6-7 word sentences. And his repetition of questions that he does not know the answers to has really taken a dip as well. Other than our weekly Early Intervention visits (which have been more like monthly since our travel schedule), Christian has had no formal therapy this summer. I am so glad that we took the summer off. He starts back into his rigid routine of 5 days of school, plus weekly Early Intervention, plus an additional day of Speech Therapy in just 3 weeks. He's had an AWESOME summer, and I am SO proud of his progress in everything!

Happy Birthday

Dear Christian,

Do you know how proud you make your Daddy and I? It's been one whole year since your CI was activated. You've amazed us in EVERY SINGLE POSSIBLE WAY IMAGINABLE. First, you turned to your name. Then, little babbles came. After a while, you started using real words. And then came the sentences. And recently, you've been singing songs. Oh Christian, you've made us so proud.

I love the way your little voice sounds in the morning, the way you ask for your breakfast, or tell me about your books. I love when you ask me "What Else, Mommy?", when you're not happy with the snack I've given you. I love how you stop dead in your tracks, point to your ear, and ask us all "Did you hear that?", when the garbage truck goes by. Sometimes, you do this in your room. I have no idea how you hear it, but you do. I love the way you say your name, and how you call your sister "Baby Lily". I love how you get so excited and exclaim "I made that!" when you see a drawing on the wall. I love how you tell me all about your day at school, especially when you say things like "I went to the gym, Mommy! I played basketball". I love how you count EVERYTHING, even when you omit the number 6. I love how you sing along to the songs that I play in the car, especially the new Kelly Clarkston song. I love the way you sit right next to your baby sister, and start to sing her Twinkle Twinkle. I love it when you see a firetruck, that you automatically say "There's the FIRE ENGINE! WOO WOO WOO!". I love it when Daddy asks you if you are his main man, that you say "In the whole world".

Christian, I love hearing you say "I love you Mommy".

I am so glad that we can hear your beautiful voice, and I am so glad that you can hear us tell you every night before bath and your CI and hearing aid comes off that we love you so very much. It's hard to believe that there was a time, not too long ago, that we thought you would never speak. We thought you would never hear the birdies that you love to look at, or hear the sirens of the firetrucks that you love to play with. We thought you would never hear the music that we danced to. But now you do. You've exceeded all our expectations. You work SO hard to listen and speak. You've put up with a Mommy who takes you to therapy appointments instead of the park (but we always go to the park afterward), always with a smile. You're my superstar.

Christian, Daddy and I love you. You are our main man in the whole wide world. Happy 1st Hearing Birthday to my sweet boy, who has done nothing but amaze us in every single way.

Love always,
Mommy

Birthday prep

I can't believe tomorrow is Christian's hearing birthday. We're starting off the day with a mapping appointment at Hopkins. While I'm dreading the drive on 95 in rush hour traffic, I am so excited to head back to where it all began. I'm busy getting ready for a hearing birthday party that we're having in our yard tomorrow afternoon. I'm making rice krispie treats for the kids to take home (a bit more appropriate than cupcakes...you can't HEAR cupcakes), and a very dear friend of mine is coming over with her bandmates to provide music for the occasion. I know Christian will have fun, but I think the party is more for us to celebrate getting through the year. Our friends from the neighborhood and school will come by, and then Chuck and I plan on sharing this special bottle of wine. Our good friend gave it to us for our 1st wedding anniversary, and we've been saving it for something REALLY special. I think tomorrow night, we'll finally have an opportunity to decant it.

Resources-Our Key To Success

Even with all the love and support that we had for our journey, I really don't think that I would've been able to get through this year without our arsenal of resources that we put together. From our surgical team to Christian's SLPs, we've been able to get many different perspectives, and answers on our journey.

Early Intervention

If you're reading this and you think your child may have a hearing loss, please open up a new window and search google for your county's Early Intervention phone number. Call and request an evaluation for your child. Your Early Intervention team will be one of your greatest tools with helping your child. In addition to providing services for Christian, our EI team always was available to answer any and all questions for us. Our TOD, the Divine Miss M, has become part of our family. She's cheered us on every step of the way from hearing aid fittings, the CI candidacy, the surgery, activation, and even his first day of his school. As our EI teacher, she helped me with all of his equipment, gave me many tools and ideas of therapy activities to do at home, and spent every minute while she was here maximizing Christian's language.

The Implant Center
When we decided to pursue Christian's CI, I kept hearing from other parents how lucky we were to live where we do. There's no question about it-Johns Hopkins is one of the leading centers not just in this country, but in the world. Hopkins gave us access to the best surgical team out there. Our CI audiologist actually co-authored the chapter on Cochlear Implants in the Choices in Deafness book (for all you hearies out there, that became my bible, as it usually does with most newly diagnosed families). It's THE place to go. Having an Implant Center that your can count on not just for your child's mapping, but to also help you through the whole process is beyond important. It's an essential key to success.

The Cochlear Implant Community
Not only was Christian the first person I really ever met who was deaf, he also was the first person in my life to have a Cochlear Implant. Luckily, through several amazing sites, including CiCircle, I was able to connect with other parents of children with CIs, and even adults who wore had them as well. The group of parents and adult users that I have met online have not only been a wonderful support for my family, but also an AMAZING resource for us. Through their blogs and the list-serv, I've had virtually any and every question regarding life with a CI answered. Need to know how to get sand out of a microphone? They can tell you? What about the plastic slide debate? They sure have their opinions? What about keeping it dry in the summer? They'll give you lots of options? How about keeping it attached to clothing? They have tried everything, and will give you what worked for their family. While I've connected with so many families and adults, I'd like to thank Erin's Mom, Drew's Mom, Amazing Val, Mom to Gage and Brook, and the Amazing Jodi, Mom to Jordan. Val and Jodi, you and your kids give me so much inspiration. Abbie and Rachel, your perspective as adult users is so valuable, and I love following you and cheering you both on as you soar with your CIs.

School
We knew that we needed Christian to maximize his language post-implantation. When we found his school, we knew we hit the jackpot when it came to programs for CI kids. I could write a 350 page book just on how fabulous this place has been. The attention, the detail, and the support that they provide to Christian is absolutely fabulous. Not only did we find a place where he "fit", we also found a place that could support us as a family on our journey with Christian.

It's Time to Name Names

As we approach Christian's official hearing birthday (5/27), I wanted to take some time to reflect on this past year's journey. Over the next week, I'll be focusing in on some of the important aspects that have helped us get through this challenging, yet exciting year. Today, it's all about support. And today, it's my opportunity to properly thank and give the much deserved "shout-outs" to everyone on our support team.

The success of a child's CI depends much on the support of his parents. We're the ones who are responsible for ensuring that therapy is attended and carried out. We research and make sure that our IEP goals are set and maintained. We troubleshoot the equipment. We are their primary language models. We cheer for, celebrate with, and cry for our kids. The rehabilitation of a CI child really becomes your full-time job. You neglect yourself. You neglect your marriage. So, where do we get our energy? Whose actually supporting the supporter? Fortunately, we had a whole team of folks behind us every step of the way.

Family









To our parents, grandparents, and siblings, you've been there since day one. Supporting us. Listening to us. Loving us. You've supported our decisions. You've learned a whole new language. You've laughed with us, cried with us, and hugged us just when we needed it. You've traveled countless trips to just be there for us when we needed you the most. You've helped in ways immeasurable. Throughout it all, you've loved our little guy for who he is, and loving us for who we are as a family as well. You've spoiled him rotten, and eased so many burdens on us. We are so grateful for you. Mom, I'd like to particularly thank you for always lending and ear, and listening to me over countless hours over the phone. I think you'd make an amazing therapist.

Friends






Ali, Therese, Natalie, Jaclyn, Kate, Erika, Jenny, Jenn, Buffy, Alison, Laurie and Janine...because of you, I've kept my sanity. You've answered the phone at midnight when I couldn't sleep. You've never asked why, you've only asked "How can I help". You've left work meetings to be with me, traveled long distances to support me. You always understood why I felt the need to grieve, but also helped me celebrate even the smallest successes. You've always seem to know when I need a break, and understand the nutty schedule we keep with appointments and therapy time. You've listened to me go on for hours and hours about picking an implant brand, all the while reminding me that I'm making the right choice. You've let me have my quiet time, you've let me have my down time. You've reminded me to not lose who I am in the middle of all of this, but at the same time, celebrated who've I become. To all of my girlfriends, from work, from school, from the neighborhood, from PEO, from the beach...thank you for always praying for us and thinking of my little guy.



Matt, Brian, Dave, and Ted...thank you for supporting my family, and most of all my husband. Thank you for being there for him. Thank you for being his support group. You've known him for 30+ years, and understand him better than anyone. Your 3 decades of friendship is so admirable, and I am so grateful that he has you all in his life.


Margarita Mommas, thank you for helping me escape the insanity of this life with much needed playdates, park dates, and happy hours. The toughest job I've ever had is being a Stay-at-Home Mom. You've made this life so much more fun, and more manageable. Thank you for always including my kid, and teaching your children the ins and outs of Christian's deafness. We're so lucky to have you around the corner and in the neighborhood. Your friendship is one of my greatest treasures, and I'm so glad that our children get to grow-up together.

Eachother


It's hard to describe exactly what something like this does to a marriage, however if you've gone through this, you know the emotional toll that I'm talking about. Christian was activated just days after we found out that we were pregnant with Liliana. Combine the exhaustion and stress from the CI journey, with the exhaustion and stress from a pregnancy, and you get a very irritable and unpleasant wife. Chuck, we were just newlyweds when we had Christian, and dealing with his deafness in our very young marriage certainly was a challenge. I know at times I was more of a Speech Pathologist and Teacher of the Deaf than a wife. Yet, you trucked right along with me. Despite the long hours and pressure, you have made it possible for me to stay at home with our children to concentrate on Christian's rehab. The pressure, both financial and emotional that you have endured in unreal. I'm thankful to always have you as my confidant. I'm thankful that you are a hands-on type of guy, always lending a hand with our kids. Our children are so lucky to have you as their Daddy, always supporting them and cheering them on. I've learned to rely on you for normalcy, and for love.

Christian's therapy team has also given us an amazing amount of support, however I'll be focusing on them, as well as the community of parents that I've met through various list-servs later this week.

If you're a parent of a newly diagnosed child, or if you are just starting your family's CI journey, look around you for the support that I can guarentee you will need. Don't attempt to go through this journey on your own. Know your support group. Don't be afraid to ask for help (although I am sure people will be clamoring down to help you and your family). Most of all, try not to be afraid of the journey. You'll hit bumps in the road, and there will be set-backs. However, with the love and support of your family, friends, and spouse, you WILL get through it.

One Year Later

A year ago today, we took our sweet boy to Hopkins for his Cochlear Implant surgery. I remember feeling so incredibly scared about all of the unknowns:

Would he get through the surgery ok?
How will he recover?
Are we making the right choice?
Will we know what to do with it?
Will he ever be able to listen and speak?

Well, if I would've known then, what I know now, it would've saved me alot of heartache and worry (and glasses of wine).

Christian was up and around the day after his surgery. Over the following months, his incision has healed so perfectly, that you can't even see it behind his ear. We made it through the whole process without ANY complications.

Leading up to the surgery, I remember worrying if we were making the right choice for Christian. Would he resent me for doing this when he gets older? Should we wait for better technology or medical advances? What about his residual hearing? We got over those fears, and pushed ahead. We knew that if we wanted to give Christian access to ever opportunity that he deserved, that a Cochlear Implant was the way to do it. And from this past year's experience, we are so very confident we made the right choice.

When we picked our implant brand, I was more than overwhelmed with the equipment itself. I couldn't imagine knowing what to do with all the cables, cords, and accessories. Now, I feel like a pro. I can troubleshoot the thing like an expert. In fact, I can handle Christian's CI better than our cable box. It's easy. It's THAT easy.

While Christian was an exceptional hearing aid user, I wasn't quite sure how he would be with a CI. Even with a severe-profound loss, Christian was able to pick up some spoken language. We were prepped by our team at Hopkins, that his CI rehabilitation could take many months, if not years to get him to speak. We were prepared for a very long road, and just prayed that he would be able to use his CI. Activation day came, and we expected little. When Christian showed immediate responses, and even repeated Lings, we knew our prayers were answered. Never in a million years did we expect Christian to do as well as he is doing now. 10 months post activation, Christian is testing at and above age level in receptive and expressive language. The kid is carrying on complete conversations with us, using 5-7 word sentences. His articulation is incredible. Christian is incredible. This whole journey is incredible.

I can't wait to see what the next year brings. As we approach his official hearing birthday (for all those outside of the CI community, the day your CI is activated, is technically your hearing birthday), we have much to celebrate, and much to consider. With his CI and hearing aid, Christian has amazed us. We can't help but wonder what an implant in his other ear would bring. For now, we'll take what we have, and celebrate our amazing little boy who will always, ALWAYS be my greatest inspiration.

A Moment of Clarity

Driving home from school today, Christian and I were having our usual little conversations. I usually ask him what he did in school, who he played with (working on answering "wh" questions, can't you tell!), if he had fun, and then I talk about all the things we see on our drive home. Not only is it a good language opportunity, I try my hardest to keep him up on our trip home so he actually will take a good nap when we get home.

Today, before I even had to ask, as we were pulling away from school, Christian just started telling me ALL about his day:

Christian- "Mommy, basketball in gym (prounounced bah-ket-ball in gym)!Mommy! Play bahketball in gym!"

Me- "Oh, Wow Christian, did you play in the gym today?"

Christian-"Shoot blue bah-ket-ball! OH BOY!"

Me-(Now with tears welling in my eyes, as I'm pulling out onto Massachusetts Ave.) "Christian, that is awesome! Did you have fun playing basketball in the gym?"

Christian-"Awesome basketball!"


At this point, it was full on niagra falls for me. I know I've been a ball of emotions lately, but complete and profound joy overcame me on the ride home today. To think that I thought I would never hear his voice. And my loving little boy is in the backseat of my car, telling me all about his awesome day playing basketball in the gym at school. Using his sweet, beautiful words.

Old Wounds Are Hard To Heal

I'm furious.

Not because of something that happened today, yesterday, last week, or last month. Not even something that happened last year.

I was in full nesting mode this evening, clearing out my desk, making labels, and getting everything in order to prepare for our little girl's arrival. I went to go place Christian's updated audiogram from Hopkins in his medical binder, and I started flipping through the pages. This binder is our bible. It's thick, and holds every single medical record I have on file for this kid that has to do with his hearing loss. It's meticulously organized and labeled. It comes to every appointment with us. All the contents are even scanned onto an archived drive for "just in case" moments.

At first, I was glancing at how much he progressed from going unaided, to aided, to implanted. Then, I flipped through our CI candidacy section, re-reading speech-language evaluations, genetic testing results, and even the psychological evaluation.

Then, I flipped to the only tab in the binder that isn't labeled, yet I know exactly what's in there.

The first document in that section is the red note that was given to us after Christian's newborn hearing screen. You see, at our hospital if your child passes the hearing screen, you get a green note with a smiley bear, which details the OAEs that they did, and a signature. If your child "refers" (come on, just call it what it is, it's failed), you get a red note, also with a smiley bear, that details the OAEs, and which ear(s) were tested. Our red note said that we referred on the right ear, but passed on the left...and then has a note on it "Unable to acquire OAEs in right ear, due to fluid in ears from C-Section delivery".

The second document in this section is a packet of information from the first ENT's office we went to to get Christian evaluated. A note from the ENT on the front to our pediatrician says "Normal hearing per attached OAEs. Possible eustachian tube dysfunction due to fluid in ears from C-Section". Yes, this was the well-respected doctor at one of DC's largest ENT practices who looked me, the brand-new Mom, in the eye and said "Christian can hear perfectly, look at how responsive he is".

The third, fourth, and fifth documents in this section are all from our very reputable Children's Hospital, all of which show no responses on his OAE, but yet in the notes section all have varying forms of "Needs more testing, refer to X audiologist".

Now I ask myself why didn't I ask more questions? Why did they piece together OAEs and DPOAEs at this office? Why did they assume that his hearing loss was due to fluid from a C-Section delivery? Were all of these doctors in disbelief?

Why didn't ANYONE...ANYONE just tell me he was Deaf? Why did it take 9 months for my little boy to get amplified? Why couldn't all these doctors, audiologists, nurses, and even social workers look me in the eye and tell me that my child is Deaf. Did I look like I couldn't take the news? Is Deaf considered a dirty word among all these hearing loss professionals? WHY COULDN'T ANYONE HELP MY SON?

Knowing what I know now, Christian should've never have passed any portion of any screens in the hospital, or any OAEs that were ever done in any office. It wasn't until we FINALLY got to Hopkins that we got any answers. It wasn't until we got to Hopkins that we were looked in the eye and finally told what we always knew--that our son was Deaf.

So here I am. It's been 2 years since Christian was born. 2 years since we had that first test in the hospital with the red note and the smiley bear. And even though it's been 2 years, I'm still FURIOUS over how everything happened (or didn't). I've learned to control my anger about Christian's actual hearing loss. I've learned to see past it. However, on days like today, when I revisit the first part of our journey with him, I get so angry. And I think I always will.

I'm prepared to possibly get another red note with a smiley bear in 2 short weeks when our daughter is born. And if we do get that red note, I'm going to cry. I'm going to be sad. Then, I'll make the calls I need to make, put our action plan in place, and make sure that we never, ever, have to go through what we went through with Christian once again.

As a parent, you want your child's life to be better and EASIER than yours. A hearing loss, no matter what level, makes a child's life hard. Then again, having a Deaf child is all I know. I don't know what life is like without pilot caps, ear molds, or topstick wig tape. I don't know what life is like without modeling language the way that I do, constantly narrating my life. I don't know what life is like without sign language. I don't know what life is like without running to the Dry-n-Store first thing in the morning to get all of the equipment ready to turn on my kid's ears. I don't know what life is like without having a Deaf child.

Just when I think I've gotten through the grief, it appears again. I'm sure my pregnancy hormones have something to do with it. When I think I've got things under control, it sneaks up on me. I guess I should just come to terms with the fact that a part of me will always be angry, and that same part of me will always be heartbroken for my sweet son who doesn't know what life is like without his magic ears.

Evolution of Words

I have to say, I think one of my favorite parts of Christian's CI journey so far is watching and listening how his words evolve over time. It started with Daddy. It used to be Da Da, then went to Dah um, then to Daa EE, then finally went to Daddy.

This weekend, Christian was playing his little hide and seek game with his Dad in the front yard. He stops, waves, and usually says "Bah Baah" (for Bye Bye) and then runs away. Overnight it seems, his Bah Baah turned into BYE BYE.

"BYE BYE DADDY!"

Perfectly pronounced. Perfectly said. By my perfect little guy! SO COOL!

It's only taken 7 or so months...

So, I finally got a visit from a friendly Montgomery County, MD Department of Traffic and Operations worker this week. I requested several DEAF CHILD signs to be placed around the neighborhood MONTHS AGO. They finally got their act together, and marked our street for placement. We should have them next week.

We live in a lovely, friendly, and all around great neighborhood just outside of DC. My neighbors have been so incredibly supportive with our whole journey with Christian. Yet, I always worry about his safety outside. Now that he's running all over the place, like any other Mommy of a toddler, my heart just sinks. If anything, I just want these signs to make the folks who use our street as a cut through more aware.

The Name Game

Sometimes I wonder if he would catch his name a bit easier if we named him something a bit more simple, like Ed, Bob, or Joe. How was I supposed to know I was going to have a profoundly deaf baby who, up until 2 weeks ago, didn't have access to 90 percent of the sounds in his name? What did his name sound like before his implant? Did he just hear the cadence of my voice? Was he only hearing the "N" sound?

CHRISTIAN.

CHRISTIAN.

CHRISTIAN.

These past two weeks, I've had an opportunity to really think about his name. I've listened to it my heart, bouncing all over, twisting and turning, jumping and flying. I close my eyes and remember the day that we decided that was the name we were going to call our baby boy. We chose the name even before we met him. We believed in the name. We knew in our hearts that our boy, would be CHRISTIAN.

CHRISTIAN.

CHRISTIAN.

CHRISTIAN.

Today he turned when I called his name. He was in his high chair, eating his dinner. And when he turned, I immediately remembered one of the many reasons that we chose that name. As my little boy turned, and focused his huge, beautiful, coffee brown eyes on his Mommy, I felt an amazing sense of Peace. Peace that reminds me that Christ is in everything we do, even when we least expect it.

Are You Sitting Down?

So, the phone rings yesterday morning at 8am...I see it's a Baltimore number, and I know it's the call that I've been waiting by the phone for. Chuck was staying home for the day, as we were going to see the Holy Father (look for a recap post later).

There was a cancellation.

We're not waiting until June.

We don't even have to wait until May.

We're getting it THIS Monday. This time next week, he'll be implanted. I can't help but point out that we received this news on the day that we were going to go see Pope Benedict XVI (for those of you who don't keep up, we received the candidacy news on the day I received my Papal Mass ticket).

We haven't even had a moment to breathe about this. I went into my typical logistical management mode (because that's what all Event Planners do), and started writing my list of things that needed to be taken care of. It was surreal and absolutely a shock. We were completely prepared for an "Early Summer" date. This Monday? Yeah, not that much...

So, here we are. Our good friends and parents have asked us "Are you ready? How do you feel?". In all honesty, we're totally ready for this. We've been waiting to get on with our journey with Christian. We've been researching this option for months and months. I've read what seems like every single article on the internet, watched all the videos on YouTube, talked with parents, and have already went through all the emotions surrounding the actual idea of an implant. Now what I'm dealing with is the anticipation, and just the general worry of having my baby in surgery. While it IS an outpatient, the fact that he is going to have to be put under anesthesia and have his skull drilled through is really giving me serious anxiety attacks.

We've pretty much decided to clear our calendar of our usual weekend craziness to prepare for this. We have some serious family time planned on Saturday and Sunday. And Chuck and I need to get emotionally prepared for all of this...come Monday, everything will be different.


For everyone who is curious about exactly what is going to happen to Christian on Monday, here's a link on YouTube that shows a Cochlear Implant Surgery.

This is a great animation that demonstrates how the CI works...

Please continue to keep our family in your prayers---we'll keep you posted throughout the weekend, and of course when we get home from the hospital.

One Step Closer

We spent all day yesterday at Hopkins, meeting with the CI surgeon and the audiologist. We learned that Christian's CT scan came back completely normal, showing that his cochleas are formed correctly. Our surgeon walked us through his CT scan, the surgery, and the risks. We actually signed the medical consent form for the surgery yesterday--something that I didn't expect to happen, but our surgeon wanted to get that taken care of. I was surprised, but glad that we got that taken care of so we can be prepared.

I was even more surprised to actually chose the brand and style of Christian's CI yesterday. I knew that day was coming, but just didn't expect it to happen yesterday. I've done an extensive amount of research, reading everything I could get my hands on, researching failure rates, and talking with parents of children with the two brands we were considering. I have never experienced something like this before, and the pressure was immeasurable. In the end, it came down to what was best for Christian and our family. We decided to go with the Nucleus Freedom.

You would think after signing the consent forms and even picking out the implant that we would be formally approved as candidates--well, not exactly. We still have to go through the Psychological Evaluation and the Auditory Skills Assessment next week. The entire team at Hopkins will meet, and then inform us of their decision. So, we still have about 2 weeks to go in this process. We did learn that if/when we are formally approved, we are looking at surgery date as early as May.

Wow.

In the meantime, we're still trucking along. Christian is getting fitted with his FM system today (YEAH!). It will be amazing to see how he does with it.