Wednesday, December 29, 2010
Aside from becoming a mother, I also went through another transformation this year. This one, while unexpected and unsolicited, I believe makes me a better person. After learning of Sophie’s hearing loss, I began to look at my life and this world differently. Once the initial anger and shock wore off, I started to realize that things I once cared about no longer mattered anymore. I began to understand how incredibly lucky our little family is and how much I want to help others who are not as blessed. I feel like a different person, mostly just more selfless than before, I guess. My priorities are much different now and I am perpetually grateful. Ever hear the saying, “It takes losing your balance to live a balanced life”? I think it best describes my second transformation. Clarity. Balance. While I still have much to learn in this game of life, I think I understand what is truly important now.
2010 was also the year of an emotional speedway for me. Have you ever laughed and shed tears of sorrow in the same minute? I’m pretty sure I have. Sophie brings me incredible joy, every second of every day. Her smile melts my heart and the love I feel for her is almost scary. I would do anything for that little girl. Most moments are filled with these emotions – joy, happiness, ECSTACY. However, it sometimes just takes one tiny storm cloud to ruin my sunshine and bring on the rain. One nagging little thought in the back of my head reminding me that she is different. It usually happens in quiet moments, such as my commute to work or when I’m lying awake at night. Really, whenever I actually have time to SLOW down and reflect on my life. I’ll admit – it can be a sad place. Alone with my thoughts in my dangerous mind... Then again, it usually only takes thinking about my astonishing little girl to snap me out of it. I remind myself of how fortunate we are and that despite her deafness, Sophie is going to be fine. Better than fine, in fact. She will be amazing.
I’ve experienced many emotions this year – anticipation, excitement, bliss, happiness, joy, devastation, shock, anger, fear, trepidation, apathy, acceptance, and finally happiness again. I am ending 2010 on a positive emotion – HOPE. I have much, much hope for this coming year and I cannot wait to live it. Welcome, 2011! We are ready for you!
Tuesday, December 28, 2010
Christmas has always been my favorite time of the year for different reasons. When I was a kid, of course it was about the presents and the anticipation leading up to Christmas morning. As I grew older, it was about finding the perfect gift for someone and watching them open it. Now, I truly value spending time with family and friends and also finding little ways to help those that are less fortunate. I cannot wait to share our Christmas traditions with Sophie as she grows older and witness how her view on the meaning of Christmas changes, as mine surely has.
Anyway, Sophie had an AMAZING first Christmas. She received more toys and clothes than she will ever use and she had a blast! She has fully recovered from surgery and really enjoyed opening her presents this year. Although her real motive was to eat the wrapping paper, she was still excited to rip and tear into her gifts! More importantly, we got to share her first Christmas with all of the wonderful people we care about. Our families were more than generous to us this year and we are truly grateful. I feel so very lucky to have such great people in our lives.
Here are some of my favorite pictures from the festivities:
White Christmas in St. Louis! We had about 6 inches at my parent's house! This is the view from the kitchen.
Driveway on Christmas morning. So pretty!!!
"Are all of these for ME??!"
"Oh yeah! Just what I needed. Thanks, Santa!"
Cousin Lyo is coming to help!
It was a very busy couple of days, to say the least! Jared and I are on vacation this week, so we are just enjoying relaxing and spending time with Sophie. We went to see Dr. C. yesterday and Sophie's incisions are healing very nicely. She is off her pain medicine and seems to be back to normal. One strange thing - she has been extremely verbal since her surgery and I'm not really sure why. I was expecting quite the opposite because she has absolutely no access to sound. My only theory is that she making more sounds and "talking" to try and hear herself??? I really have no idea. One thing is for sure, though - this little girl has not gone silent! I'm giving myself a pat on the back for that! ;) Oh, and let's not forget - 10 DAYS UNTIL ACTIVATION!
Sunday, December 19, 2010
The first night we were home was a little rough because she kept trying to pull her bandages off. Jared and I literally just sat on the edge of our bed and watched her on the video monitor until she pulled them off, then we would go and fix them. Eventually, she tired. ;) Luckily though, Sophie has been sleeping in. We didn't get up until around 10AM both days this weekend! I cannot remember the last time I slept so late. What a nice treat! I think the pain medicine has really been contributing to her sleep, because she has also been taking extremely long naps, too.
In fact, this is how Sophie spent most of the weekend:
Her incisions seem to be healing nicely and they also do not seem to bother her at all. I was afraid she would pick at them once the bandages were off, but that hasn't been a problem. The right side definitely looks worse than the left and the right side of her head is also more swollen. I'm not really sure why...
At least they didn't have to shave off too much hair, right?! :)
Friday, December 17, 2010
We arrived at the surgery center around 7AM yesterday morning. St. Louis was hit by some sleet and ice during the night, but we drove very carefully and arrived in one piece. Since her surgery wasn't scheduled to begin until 9, we had some time to hang out and spend time together. Sophie did very well considering she was a hungry girl and could not have any milk. :(
Sophie's surgery took around 7 hours total, so we did not get to see her again until a little after 4PM. To me, this seemed like eternity, but we both had our parents there to chat and try to keep our minds off of what was actually going on. We were given periodic updates and Dr. C came out to speak with us halfway through and reassured us that everything was going well.
"That Daddy, always making me laugh!"
All in all, everything went great! Both of her devices were tested in the operating room and are functioning properly. I'm so happy to have this hurdle behind us. Yesterday was a very long, stressful day, but it could not have gone better. Now, the countdown will begin to activation day - 3 WEEKS!!!
Tuesday, December 14, 2010
Sophie will not be able to hear right after her surgery. We must wait a few weeks for her incisions to heal and to let the swelling go down. Then, her CIs will be activated. Our initial activation is scheduled for January 7th. At this time, the audiologist will only be giving Sophie a small amount of sound because we do not want to overload her brain. We will have several audiology appointments in the first few months following the initial activation, with each session giving her more access to sound until her CIs are fully “mapped”. I can’t believe she is going to be hearing at 9 months old. I’m just so happy that everything is falling into place! I know that the coming months are going to be a lot of work and hold much frustration, but at least I will know that Sophie will be benefiting from it. She is going to hear!
This will be the best Christmas present ever!
Oh, and Sophie is pretty excited too. Can’t you tell??
Friday, December 3, 2010
1. The external sound processor captures sounds, then filters and processes the sounds.
2. The sound processor translates the filtered sounds into digital information, which is then transmitted to the internal implant.
3. The internal implant converts the digital information into electrical signals, and sends them to a tiny, delicate curl of electrodes that sits gently inside the cochlea.
4. The electrical signals from the electrodes stimulate the hearing nerve, bypassing the damaged cells that cause hearing loss, allowing the brain to perceive sound.
This is what the device will actually look like on Sophie:
During the surgery, Sophie's ENT will dig a shallow trough in her skull to place the internal implant. The external processor (which you see above) will "attach" to the internal part by a magnet. Since Sophie is getting two implants, we actually ordered four external devices so that we can have a back-up for each ear in case of malfunction. We have been debating what color to choose because Sophie basically has no hair and we aren't sure what color it will end up being. So, we ordered one set in beige and one in brown. All of our bases are covered! ;)
Sophie came down with a cold over Thanksgiving weekend, but she is starting to feel better now. I am praying that she doesn't have any fluid in her ears and I've been on high alert for any sign of an ear infection. So far, we have no reason to worry, but if her surgery is postponed, I will be frustrated beyond words. Cross your fingers for us!
In other news, we have just been playing this waiting game and getting ready for the holidays. Last weekend, we went and cut down our first real Christmas tree as a family and Sophie got to meet Santa. So cute! By the way, is there a way to prevent an 8 month old baby from pulling the Christmas tree down on top of them? Other than acting as a physical barrier at all times?? Sophie is increasingly mobile and into absolutely everything. We have the baby gates up, but she still gets into trouble! To give you an example, here's a funny story:
We have a small step leading into our living room from our kitchen and Sophie was playing with her toys on the kitchen floor earlier tonight while I did the dishes. I turned around and she wasn't there. Of course, my heart jumps and I start frantically looking everywhere - under the table, down the hall, in the front room, etc... Well, the little stinker must have mastered going down the step into the living room because she went to see the Christmas tree! I found her just as a handful of pine needles approached her mouth. Silly girl.
I will leave you with some pics of our Christmas tree adventure:
Monday, November 22, 2010
As we near Thanksgiving, I can't help but think of the many things we have to be thankful for. Our lives have completely turned upside down in the past eight months, but I wouldn't change a single thing! Jared and I are very lucky to have the resources and family support to be able to give Sophie every tool that she will need to be successful. Some days are tough and challenging, but most days are filled with the wonderful joy that she brings to our lives. Sophie is incredible and continues to amaze me each and every day. I know in my heart that she will grow to be a smart, successful, and beautiful person.
It's hard to believe that my tiny little baby (who weighed less than six pounds at birth) is almost eight months old and has tripled her size! Time goes by way too fast. Sophie is creeping and (army) crawling everywhere, pulling up, and into absolutely everything. She is fascinated by people and the world around her. I can always see the wheels turning in her head and I know that she is taking everything in. She is a super friendly little girl, constantly smiling and laughing. She loves other babies and children and I can tell that she has a very giving spirit because she is always offering other people her favorite thing in the world-her thumb. :)
Below is short video that I shot earlier. I'm 90% certain that Sophie heard me call her name. (I only watched and analyzed it about 100 times!) Still, it gives me hope. These moments are few and far between and hope will make these next few weeks easier to get through!
Happy Thanksgiving, everyone!
Wednesday, November 10, 2010
This is the best news that we have received in a long time. I am beyond excited! Her surgery is planned for 12/16, which is only 5 weeks from tomorrow. Know what the best news about that is??? Only 5 more weeks of battling with hearing aids! I can see the light! I know that I'm going to be getting very nervous as Sophie's actual surgery day approaches, but right now I am so ready for this new adventure that I'm trying not to think about the actual surgery part.
We also had our last therapy session with Moog before Sophie's surgery, along with her 6 month IFSP (individualized family service plan) review earlier this week and both went great. Sophie is doing a great job at learning to imitate others and mastering the skills that will be needed to map and program her implants. Sophie's therapist is optimistic that she will be a quick learner and has already told us that they expect her to exceed the milestones that are set for other babies/children at her school. While this is great and comforting to hear, it also reminds me of the tough road that we have ahead of us. We are approaching the very beginning of a new battle and it is going to be a lot of work-for Sophie, her therapists, teachers, and us. Sometimes I wish I could get just a tiny glimpse of the future so that I could know everything is going to be fine. Fear of the unknown, I guess...
Sunday, October 31, 2010
I really feel like a weight has been lifted for now. My apologies to Dr. C's office, St. John 's audiology, and the customer service line at Anthem. I know you all know me by name and are sick of me calling. Am I a pushy mom? Maybe... Crazy mom?? Hmm... I guess it just depends on how you look at it. I'm just advocating for my little girl.
We had our last audiology session before Sophie's surgery on Friday and she did great. It was an aided testing session and she tested similarly to her last aided session. With both hearing aids in, she is responding to speech at 65dB. This means that she can tell that we are talking to her and she can probably differentiate voices, but she cannot really understand what we are saying. It would be difficult for Sophie to learn speech with just her hearing aids.
She is also doing a great job at telling us when she hears a sound. This will be very important when she gets her implants and they have to be programmed and mapped. Everyone at Moog is very encouraging and calls her a little genius. They say that she is learning better than many of the older babies that attend school there. Not only is this comforting because it gives us hope that her speech delay will be minimal, but it is also an indication that her hearing loss is non-syndromic. Since we still do not know what the cause is, we are somewhat apprehensive that she may encounter other developmental delays that may hinder her ability to learn and to speak. However, based on what she has shown us in her first 7 months of life, she is a smart little cookie. We are quite hopeful and very proud of our baby girl!
Here is a picture of my little ladybug. Happy Halloween everyone!
Saturday, October 23, 2010
Now, I always welcome curiosity and am willing to talk about Sophie's hearing loss with anyone that we meet. I always explain how we found out, talk about her hearing aids, and the fact the she will be getting cochlear implants. For some reason that day, I had no desire to say anything else. I know that I was rude, but I just felt so incredibly tired of being positive and trying to make everyone else believe my daughter is going to be fine. It is heart-breaking to know that people look at Sophie, take note of her hearing aids, and feel sorry for her. They do not see a sweet, smiling, bouncing, baby girl as I do, but a disability. This is a struggle that she will always have and I will not always be there to defend her. She's deaf. DEAF. Although we have this amazing technology to help her, she will always be deaf.
I think the worst part about this journey is the stigma that is associated with deafness. Assumptions are made and she is stereotyped as soon as someone sees her hearing aids. If I had a quarter for every time someone asked me if we are teaching her sign language, we would be well on our way to having her tuition paid in full!
One of my goals is to not let Sophie's hearing loss define who she is. And I don't. However, it is harder to influence other people, especially because Sophie is still so young and cannot really "show" others that she isn't much different than them yet. Some days are harder than others and I obviously had a bad day last weekend, but I'm going to try my hardest to make other people see what I do-an amazing, smart, and joyful little girl that just happens to hear differently than we do!
Tuesday, October 19, 2010
Part of Sophie's therapy is giving her as much visual reinforcement as possible when she babbles and coos. I do so by making excited and funny faces whenever she "talks". I also mimic the noises she makes with the hope that she hears me. Another major part of her therapy is talking to her. It sounds simple, but it is actually pretty difficult. Ideally, I should be narrating everything to her. For example:
"Sophie, let's change your diaper. Are you wet? Let me see your diaper. Oh my goodness, you are wet! Your diaper is wet! You need a new diaper. Hand Mommy a diaper. Are you ready for a clean diaper?Mommy is putting on your diaper now. Wow! We have a clean diaper!"
Let me tell you, when you apply this to everything you do in a day, it is exhausting!!! The funny faces and narrating can also look very strange to someone who has no idea what I am doing or why. I'm sure I've gotten several strange glances as I walk through the mall or the grocery store. ;)
Sophie is still pretty verbal, but that could change any day. I'm just going to continue to do my best and not get too discouraged if she does stop babbling. Sometimes it's extremely difficult when I'm tired or just not in the mood. It can be very hard to get enthusiastic, but I know I have to. If we are lucky and she never stops babbling, then her speech delay will be lessened and the hard work will have paid off!
Here is a video of Sophie blowing raspberries and "talking" to her toys. In the beginning, she *probably* even responded to her name!
Friday, October 8, 2010
We met with Sophie's ENT on Monday and discussed her CI surgery timeline. We have made all of our decisions and are ready to go! He is submitting the paperwork to our insurance company and we have to wait for approval before we can schedule her surgery. If everything goes smoothly, we may be looking at a December date! The ENT believes that Sophie is big enough to tolerate the surgery and is confident that the procedure will go smoothly. Like I stated before, he is a very conservative surgeon, so I fully trust his judgement.
At this point, it is a waiting game. I left the ENT feeling excited, but a little uneasy. It is hard for me to just sit back and wait. I feel like I should be doing something to push things along. There are a lot of plans that need to be made with her surgery (holiday season, taking off work, etc) and I want to have everything in place. Jared says that I need to relax, but I just have so many worries going through my head! Easier said than done... I really hope the insurance approval goes through quickly and we don't encounter any problems. If anyone has experience in this area or any pointers, I would love for you to share!
Sophie is doing well! She cut her first tooth and has been pulling out her hearing aids less often. I wonder if teething has something to do with it?? She is also getting ready to crawl! Time is going by so quickly!
Friday, September 24, 2010
We also had audiology and therapy with Moog yesterday. Have I mentioned yet how much I love her school? Everyone is so amazing there. The teachers and audiologists are incredibly knowledgeable and very supportive. The other parents have been welcoming and encouraging. Each time we visit, seeing all of the other children playing and talking reminds me that Sophie is going to be just fine!
Anyway, we had a booth test yesterday (unaided) and Sophie did great. She is such a little trooper! They are working on teaching her to let us know when she hears a sound. To do this, she sits in a Bumbo seat and her therapist sits directly in front of her. There are TV screens on either side of her. Her audiologist speaks and plays sounds and tones through a tiny earphone at different levels and frequencies. When she responds to a sound, her therapist directs her attention to one of the TV screens and a bright picture appears. It took a few tries yesterday, but she was able to turn to the screen all on her own when she heard a sound. She is learning how to tell us she heard something. She is only 6 months old and we are already so proud of her! Her results from yesterday have been very consistent with all of her other hearing tests. Without her hearing aids, she is responding to speech at 95-100 dB, which is about the equivalent of a lawn mower right next to you.
Since we are now certain she is a cochlear implant (CI) candidate, we have a lot of decisions to make in the coming months. It's a good thing we have been doing a lot of research! I'm pretty sure we have decided to get bilateral implants. There are several pros and cons involved, but I know she will benefit the most from two implants. Also, we still need to pick a company and device. We have a good idea of what we want, but haven't finalized that decision yet. We have an appointment with her ENT on 10/4 and we will be talking about the timeline for her surgery. I would like to have her surgery in December, so that she can be activated and "hearing" by the time she is 10 months old (she will turn 9 months on 12/26). Moog is supportive of this decision, so I am hoping that her ENT concurs. We'll see! He is a very conservative surgeon and hesitant to perform CI surgery on infants less than one year of age. However, he has told us in the past that he is comfortable implanting Sophie around 9 or 10 months.
I'm feeling very excited and positive about everything lately. Sophie is ahead in all other areas of development and I'm optimistic that her speech delay will be minimal. I know we still have a very long road ahead of us and endless hours of therapy and audiology, but I'm looking forward to it.
Monday, September 13, 2010
Sophie had therapy with Moog last week and we are working on teaching her to imitate us. In order to learn how to speak, babies must be able to imitiate. Most babies learn the ability to imitate by the time they are around seven months old. Jared has been working with Sophie and teaching her to stick out her tongue when he does. It is the cutest thing ever and she's pretty good at it! We are so proud of her!
In other news, Sophie has been pulling out her hearing aids even more. I know she's doing it for attention because she will go through the motions of grabbing at them when they aren't even on her ears. Then she gets upset that she is grabbing and nothing is happening-no one comes running to her! ;) She is sure developing a little personality!
Thanks to Lily's Mom, I also called Sophie's ENT and requested that they do the blood draw to test for Connexin during her testing on Friday and he will do it for us. Yay! Maybe we can get answers sooner.
Now, I will leave you with a picture of my little stinker:
Monday, September 6, 2010
She has been very tolerant of her hearing aids so far, so I just hope this is a phase and not the beginning of a daily battle! I don't want to resort to making her wear a pilot cap to keep them on. Ugh!
On another note, I have been reflecting lately on the last few months and all of the information we have been bombarded with. It is a lot to take in and we still have several big decisions to make regarding Sophie's future, but I think the worst part is that I still feel like we are in limbo. We don't know the cause of Sophie's hearing loss and I'm not sure if we ever will. As I stated earlier, there is no history of hearing loss on either side of our family and there were no environmental factors during pregnancy or delivery that could be the culprit. There is a recessive gene, Connexin 26, that could possibly be the cause. Everybody has two copies of this gene, and if Jared or I carry a flawed copy and passed it to Sophie, that is the cause of her hearing loss. 1 in 33 people carry a flawed copy of this gene, so it is relatively common. Her ENT is going to test for Connexin when he performs the surgery for her cochlear implant(s). I wish he would test her sooner, but it requires a complicated blood draw and she needs to be sedated. If we are carriers of the flawed Connexin gene, then we have a 25% chance of having another child with hearing loss. At this point, I'm not sure what I even want. Part of me wants Connexin to be the reason because at least then we will have an answer.
Sometimes, I feel like our life is on hold and, in a way, that is one of the hardest parts of dealing with Sophie's hearing loss. We can't buy a new house because we have to save for Sophie's tuition instead. We don't want to plan for another child until we discover the cause of her hearing loss, if ever. And now, geographically, we must stay in St. Louis because Sophie's school is here. Not that we were wanting to move anyway, but we both always have job opportunities that would require relocation. I start thinking about all of this and get frustrated because other people don't have to deal with issues like this. They have normal every day stresses and their biggest concern is something trivial. Then I start to feel guilty for feeling this way because I realize that things could be a lot worse. Sophie is amazing and she is going to be fine. There are parents out there who are helping their children battle a much more severe disability than we are, so what I am complaining about? It's seriously a vicious cycle that I fight: feelings of anger and frustration, and then feelings of guilt. Luckily, as time has passed, I've gotten better. Most of the time, I'm able to stop thinking negatively I soon as I recognize I am doing it. I realize how incredibly lucky Jared and I are to have the resources and support to help Sophie in every way possible. I know there are parents that are not as blessed and my heart goes out to them and their families...
Thursday, September 2, 2010
On 9/17, Sophie will be having an MRI and CT scan to confirm whether or not she is a candidate for cochlear implants. Her ENT has to determine how her cochleas are formed and confirm that her auditory nerves are intact. We have waited so long to have this testing performed because she will have to be sedated for several hours. I'm both excited and nervous for the tests! It is very rare that a child cannot get an implant, so I'm feeling pretty good about everything. I just want the results so we can move forward!
TGIF tomorrow! And a 3-day weekend! ;)
Wednesday, September 1, 2010
I felt instant and unconditional love the day my daughter, Sophia, was born. I had such an overpowering urge to protect her from everything the minute she was placed into my arms. My husband and I chose not to find out if we were having a boy or a girl and I was so incredibly happy to have a daughter. It was the biggest surprise I had ever experienced. I knew by glancing at her daddy that she already had him wrapped around her finger as well, just seconds old. This was the best day of my life.
Sophia failed her newborn hearing screening at the hospital, but we were told that this was fairly common and not to worry. We scheduled a follow-up test at 4 weeks old. After bringing her home, we became worried when she didn't startle to loud noises, such as our dog barking. We discussed our concerns with her pediatrician, who also told us not to worry and she thought it was because Sophia has such a mild and easy temperament. My husband (Jared) and I vowed not to worry until we had the follow-up test. We took Sophia in for the ABR (auditory brain stem response) on 4/26/10. During this test, an audiologist placed electrodes on Sophia's head and tiny earphones in her ears and played a series of sounds and tones. Her brain stem response to these sounds was measured.
The testing itself is very nerve wracking for a first-time mom because they want the baby to be asleep the entire time. Very hard to plan for a one month old!! It was seriously the longest two hours of my life! I remember the audiologist coming in the booth at one point to check the earphones and my husband asked her how Sophia was doing. She looked at us with pity and I could tell she was choosing her words carefully. "Well, she's sleeping very well. You guys are doing a great job." It was at that minute that I knew the results. I vaguely remember leaving the booth and going to the nearest bathroom in a daze. You know the feeling where it is like you are outside of your body, looking down on yourself? That is what I felt. I was watching myself, as if I were in a dream. Surreal. I remember thinking, "Is this really happening? Am I awake? What is going on? What are we going to do?" I forced myself to go back into the booth, but I could not meet my husband's tearful eyes because I knew he realized it too. We could not pretend that everything was okay any longer. This was the worst day of my life.
Our fears were confirmed and Sophia was diagnosed with severe to profound hearing loss in both ears. At first, we were both very angry and confused. I just didn't understand. There is no history of hearing loss and I had a very healthy pregnancy. I did everything right! I wouldn't even chew sugar-free gum while I was pregnant! Why is this happening to us? It's not fair! This lasted a day or so, and then I went into research mode. Within a week, Sophia was enrolled at the Moog Center for Deaf Education and we had scheduled an appointment for her to be fitted for hearing aids.
Today, my husband and I are in a much better place and we are thankful every day for this beautiful gift we have been blessed with. Sophia, or Sophie as we call her, is absolutely amazing and I would change nothing about her. She is our angel. Right now, we are going through the ups and downs of being new parents and balancing life. We have the added responsibilities of visits to the audiologist, ENT, therapy sessions, and the joys of caring for hearings aids, but we seem to be doing a pretty great job so far.