Saturday, May 31, 2008

Out in Public with the Hearing Aids

We took our first trip out in public since Aiden got his hearing aids. It was for Kailyn's field day at school, she's in the first grade. I thought what a great place for him to get some kind of stimulation with all of the kid's voices and laughter! It was a lot of fun and Kailyn had a blast! For those of you who don't know Kailyn, she has a very strong personality who has no problem saying what she needs to, doesn't have a shy bone in her body, and is a little comedian! When the GIRLS beat the BOYS at tug-of-war, Kailyn yelled out "oh yeah, oh yeah, girl's rule, girl's rule, boy's stink!" as she danced around shaking her butt! We need to work on the being a good "winner" part still!

Kailyn is so proud of her brother so everyone in her class knows Aiden. A lot of the kids would come over to check him out and as 7 year olds, ask "what's that thing in his ear?" to which I replied "When he was born his ears didn't work and he can't hear, so these help fix that and help him hear, they're called hearing aids." Then there were all kinds of responses, "hmmm", "they're cute", "cool", and my favorite, "so they're kinda like band aids?" How cute are kids! One kid looked right at me and said "Someone told me he was deaf" and I just truthfully responded, "Yes he is, but one day soon, he will hear!"

After Kailyn's field day was over, I headed to my fourth grade class to join them for their field day (I teach at this same school, but am still on maternity leave). I've brought Aiden up a couple times to my class, but not since he's had his hearing aids. As my fourth graders surrounded me and admired Aiden, a few of them asked about the "things" on his ears and again I told them about his hearing. As I think about it now, I should've used this as a teachable moment on uniqueness. That was one of my biggest lessons all year long, how we are all unique and special in our own way. Oh well. They were too hyped up for field day, and really had the same reactions as the first graders ... "oh, ok, cool". Kids amaze me!

Now, to the other spectrum, parents. Most of my student's parents are aware of Aiden's hearing loss and have been very supportive and were excited to see him in his hearing aids. A lot of the parents throughout the school I don't know, but they know me from working at the school. They'd rush up with a big smile to see Aiden and I'd sorta see their smile disappear with a quiet "congrats ... cute ... how is he? is everything ok?" and they'd walk away ... no more conversation, nothing. I was okay with this ... it's not like we all know each other, BUT, I did think, we could still talk, we don't HAVE to talk about what you see, he is more than his ears.

What I've always known and have experienced myself, is that disabilities scare people, adults I believe, more than children. Kids are amazing, they look past the disability, I've seen this in my classrooms. What I learned yesterday is that I am not scared anymore. I was so proud to walk around with my son and was ready for anyone to ask about his ears. I am proud of who he is and will not hide behind his deafness, because it's his deafness that will enable me to be more than I ever was before!

Tuesday, May 27, 2008

The Hearing Aids are On

Today was Aiden's FIRST hearing birthday! He was up at 5:30 am to eat and was all smiles after that! He knew it was his big day and that I needed those smiles to help me through the morning! Our appt. was at 8, so after getting Ryan & Kailyn out the door, Mike and I headed to the audiologist. The appt. went great - they gave us Hearing Aid 101 class (how to clean them, the parts, how to turn them on/off etc) then showed us how to put them on Aiden, which he didn't like one bit! His ears may not work, but his lungs sure do! They fit perfect though! He didn't have much of a reaction, but like the audiologist said, it's like his new "ears" are just being born and are only one minute old. Just like a newborn won't know his spoken name, neither will a baby just hearing for the first time. Again, they don't know yet if he's just getting vibrations or if he may be hearing even a little bit. We're going to go with option 2 and believe that he is hearing, even if it's just a little bit! Even if he's not, we're all going to continue on like he does! He needs to wear them all waking hours, which right now, depends on what day of the week it is!

He took a great nap for me today, so I didn't get the hearing aids back on him until after his bath tonight. Everyone was gone, so it was my time to check them out on him. They're so small and I hate pushing the earmold into his ear, but the snugger you get it to fit, the less feedback (buzzing noise) the hearing aid lets off. Look at how cute he looks!

He was fussing after his bath (probably because I was trying to stick some foreign object in his ear for the first time!), but once I finally got them on he calmed down and then him and I just sat and chatted. He was smiling and cooing back with me, which he usually did before the hearing aids, so I performed the "binky test" to see if he'd stop sucking on it when I talked to him and he did ... multiple times! I barely have a voice right now, thanks to Texas' lovely allergy season, so my voice is real deep and it's hard to talk ... but I didn't give up! I even tried to sing him a few songs - no tune what-so-ever! He didn't like my singing very much!But, when I stopped singing, he got to be all smiles again. That's okay ... I wouldn't want to hear me sing right now either! Here are a couple more of my binky baby ...

So, the day was great and Aiden started it by teaching me a lesson - baby smiles cure all! I had all those worries for nothing. I really thought the sight of the hearing aids on him would make it real and get me down. Well, fact of the matter is, this is real, my son is deaf - no denying it. And the hearing aids, well, they make me realize we are on our way to a miracle. This is our first big step in our pursuit to let Aiden speak and listen. I'm already so proud of him! We have many steps to go and we're ready for the hike, but for now, we're all in step for our journey with hearing aids!

Monday, May 26, 2008

Our first big step ...

Aiden gets his hearing aids tomorrow. Our appt is at 8 a.m. I know our son is deaf, and I'd like to think I've accepted this, but I don't think I have - not 100 percent - not quite yet. I want to cry just thinking about it, but I know this is our first big step towards his speaking and hearing. I have to be ready for the struggle of keeping them on him, the questions I'll get asked while we're out, ... but of course, it will all be worth it! They say there is a constant buzz coming out of the hearing aids because babies ears are so tiny and their ears are growing faster than they can make new molds, so we'll always be at the audiologists getting new ear molds for them. In fact, one of the families I am in touch with, the little boy's nickname is Buzz - he's as cute as can be and has a great story! I am excited to see what the next step is after this. I think they test him to see if he hears anything with the hearing aids on. I pray that he can, even though they tell me now that he won't, but I refuse to give up any hope, no matter what they say! Even if he hears just a little bit! No matter what though, I'll continuously chat with and sing to him like he can hear, because his smiles and conversation back tell me he loves it - and so do I!

So, here we go, first big step, hearing aids ... all I can say is bring it on, I'm ready for my precious bundle to start hearing!

Sunday, May 25, 2008

What Great Support!

I have put myself and our story out there. I wasn't ready to talk about this with people I didn't know, but knew I needed to hear their stories, their successes. So I started leaving comments on other blog sites of families with deaf or hard of hearing (hoh) children. I wasn't sure of what the response would be. Let me tell you, it has been overwhelming! It feels INCREDIBLE knowing that there is this group of people out there who don't even know you, yet do know you, and could probably tell your story, and they care! I've realized this is a community of people who BELIEVE, who have HOPE, who have FAITH, who CARE not only about what's going on in their life but about other's going through the same thing as well! It feels wonderful knowing there's always someone steps ahead providing faith through their successes, someone walking hand in hand with me, and someone just entering the deaf/hoh world which I can only hope to be as inspirational to as others have been to me!

Throughout my dad's dementia battle, I had great support from friends and family, but didn't have the chance to find that "community" of families who had been there, done that. I still wanted to tell my story and share what I learned to help families avoid the same pitfalls and hell I did. I feel I never got to end my dad's fight before starting a new one, Aiden's deafness; they are so different, yet similar. My dad stopped listening and speaking ... the demon won, and we knew in the end, that it would; we didn't have that choice. With Aiden - HE WILL LISTEN AND SPEAK and the only way we won't win is if we choose not to! We already see "grandpa Bob" in Aiden, he's a stubborn little thing and he makes sure he's always heard, just like his grandpa!!!!

On another note .... a precious little boy (and cochlear implant recipient), Christian, gets activated (once the implant surgery is done, it takes a few months before they actually "turn on" the new ears) in a few days! How exciting! I can't imagine being at this point! I picture it as feeling like the night before your wedding day, the moment before getting induced to have your baby, or for military wives - the night before your husband gets home from an unsponsored tour ... it's the day your baby will hear! What is more exciting than that!!!! We still have a while to go before that big day, but in the meantime, we are here to celebrate other "hearing birthdays" with this great community of friends along with providing HOPE, BELIEF, and FAITH to all the families who enter our world too!

Wednesday, May 21, 2008

Meeting Helen Morrison, Ph.D., Cert. AVT

Today I had an appt. with Helen Morrison, a TCU professor and well known certified auditory-verbal therapist (AVT). I called Ms. Morrison upon the recommendation of a guy Mike works with. Our initial conversation was very informational - one of questions and answers and I knew from the caring in her voice that I wanted HER to teach my son to hear and talk. Before I talked to her I asked around - everyone in the deaf/hoh community here in the DFW area knows her and talked very highly about her (in fact Aiden's ENT said we'd be very lucky if we could get her)! She usually is monitoring her grad. students while they complete the therapy sessions. I wanted HER to teach Aiden. So in our second conversation I asked her "will you teach my son, will you help us teach our baby to hear and talk?" and she said yes! So today, Aiden and I went to meet with Ms. Morrison and it was more than I imagined! She asked if Aiden could be part of some reserach she is doing, this way she can meet with us for therapy once a week, starting next week!!!! The whole meeting was wonderful! I already feel a connection with her and can tell she loves what she does, I can tell it's in her heart! My dad always told me to follow my heart and my heart feels Ms. Morrison is going to be very special in our life!!

I was given some great information and some more parents to contact along with some things to start working with Aiden on. I get asked a lot "what kind of therapy can they do with a 2 month old?!?" One thing they do at this age is teach me how to communicate with him. Ms. Morrison taught me today to emphasize my verbs and adjectives with him and to be very narrarative with my voice as I talk to him. As she said, "Every moment is a teachable one!" She was also excited to see Aiden loved his "binky". He is definitely my "binky baby"! He always has to have it! She told me to watch his sucking on it as I talk to him, if he stops sucking it typically means he's reacting to me communicating with him! Of course I had to test this out all day, and guess what!?! Not only does he stop sucking when I'm talking to him, he smiles and coos back! I've known all along that he understands his mommy! Anyone around me listening to me talk to him may think I'm a bit crazy, but Aiden loves it and that's all that matters!

So, we will start therapy next week with Helen and then the week after with Becky at Cook Children's in Fort Worth! What a great day!

Tuesday, May 20, 2008

Aiden's Two Months!

Yesterday was Aiden's two month appointment! I can't believe he's two months already! What a day it was - our appt. was at 9:45 and we didn't get out of there until after 11:30 and anyone who has a two month old knows what a LONG 2 hours that is! Plus, he got FOUR shots! My roly poly weighed in at a whopping 12 pounds and was 23 inches! He's gained over 3/4 pound in one week! No wonder - he eats any chance he gets! Dr. said he's nice and healthy!

As we were forever waiting, a mom came in with her son who was about 12-18 months old. He sat and babbled with his mom and tears came to my eyes. I immediately wondered, will my baby be able to babble with me like that? Then I thought about the equipment Aiden will have to wear all of his life (google cochlear implants to see a picture of it). Of course I want my baby to hear, and I know the only way he will is through cochlear implants and technology will get better etc. etc. ... and I know this sounds so "material", but again, this world is hard enough and I couldn't get past that moment of feeling sorry for my baby and what he will face. I determined at that moment that Mike and I will have to come up with some good/humorous sayings for Aiden to use to help explain his "equipment". Then again, Aiden will probably come up with his own and then teach us a few!

His audiologist called yesterday to let me know his hearing aids were in. Our appt. is scheduled for next week, but she said we could come in this Thursday instead, but Mike won't be able to make it and I don't want to do it alone. I'm not ready ... it's almost as if putting hearing aids on him is the final diagnosis and will make this all real. I just have to keep telling myself, it's a positive step towards successful hearing/speaking! I'm excited about therapy to start, I'm just not ready for the hearing aids, they're a visual and will be a constant reminder of what no parent is prepared for, a child with any type of disability. I gotta move forward though - we're going to do this and one day AIDEN WILL HEAR and babble and speak and do what he wants to do without limitations! He is amazing, deaf at 2 months, I can't imagine him hearing at 2 years!

Friday, May 16, 2008

Dr. Jane Madell Seminar

Today Mike and I went to a seminar on hearing loss. It was for educators, health care professionals, and parents. Dr. Jane Madell Director of the Hearing and Learning Center in New York, was the speaker and she was awesome! Some of it was just statistics for the audiologists, speech therapists, etc., but a lot of it was really great information! When we walked in (with Aiden), she stopped the class and welcomed us and told us babies are welcome ... and then held Aiden as she continued to speak! She was very good! She sat with the parents for lunch (there were about 7 of us) and answered questions. Each of us parents had a different story - one child was just beginning to go deaf at age 7 (how scary for that poor child!), one had auditory neuropathy and the parents believe she can hear, but can't process what she hears, another had a little boy who spent 7 months in the NICU and the drugs keeping him alive caused his hearing loss - the baby still has a traech (sp?) too. We were the only ones with a baby diagnosed as a newborn. The little boy with a traech just had his first cochlear implant at 12 months and was activated to hear at 14 mths. As he told the story about the activation day tears filled his eyes! I got chills all over and started crying with him! How awesome it must feel the day your baby's ears are "turned on" and they hear for the first time!!!! I can't wait for Aiden's "hearing birthday"! Just thinking about it puts a huge smile on my face!!! Oh how I pray that my baby is a candidate for cochlear implants! Just think, 2 months ago I had never even heard of this amazing technology!

Anyway, we met some great professionals there too! We met Becky Clem, who will be one of Aiden's audio verbal therapists, Helen Morrison who is another well known researcher/therapist with TCU Miller Speech and Hearing Clinic, and our new audiologist Tracy! All of them approached us, and without ever meeting us before knew exactly who we were! It felt so comforting knowing they're already looking out for us and ready to go full force with Aiden's therapy! What a great day ... and the best part about it, Aiden was such a joy all day long! It's like he knew we were there to learn more about him!

Oh yeah, I forgot too that they told us about an AGBell convention (which Mike realized silently and then out loud, laughing at himself, that AG stands for Alexander Graham Bell - haha! It is an assoc. for the deaf and hard of hearing) in MILWAUKEE, WI!!! It's a huge convention they have twice a year for deaf/hoh families. And the best part is that it is the last week of June! We were planning a trip to mom's (who lives in Oshkosh, 1 hour away) for the Fourth of July, so we'll just go a little earlier! Not only will it be another great resource avenue for our family, but I can introduce my mom to Aiden's world! How exciting!

Wednesday, May 14, 2008

Step by Step, Day by Day

Yesterday I wrote about how our journey started. What I didn't touch a lot on was how I've been feeling, or want to feel or confusion about HOW TO FEEL. Isn't that weird ... questioning myself HOW I should feel?! But I did, I still do, ... day in and day out.

The first day the audiologist told us Aiden's hearing loss was permanent, that he was deaf, I cried and on the way out of the office I felt guilty crying, because other than Aiden's ears, he was a healthy 6 week old baby. I told myself I had to make this alright in my mind, I had to be strong - for Aiden, for Ryan & Kailyn, for my husband, for everyone I was going to have to tell "my son is deaf." And I held a lot of it in. When I got home that day I went grocery shopping and on the way home I got stopped behind a bus and there waiting by the bus was a mom. They wheeled a boy off the bus in a wheelchair, his head strapped to the back, his hands strapped down, and very well seen that he had a lot of challenges. Isn't it wierd the way God talks to us! Then I went home knowing we were so lucky it's just Aiden's ears, that he will be able to function in our world, yet inside I still just wanted to break down and cry. I talked to my mom and sister-in-law Tus that night and told them the news about Aiden's ears. I cried a bit, but again found myself protecting them and wanting them to believe I was OK when I wasn't. I wanted so bad for my mom to be there and hold me, cry with me, and tell me everything was going to be okay. I wanted so bad for Tus to come over and have a drink with me and let me cry my eyes out and agree with me how bad this all sucks! Because it does ... it just sucks!

The next day I jumped on the internet and started reading parent posts and saw a lot of parents felt the same way I did ... I read these and realized it is SO okay to feel sad and mad and scared and ask why and all those crazy mixed feelings that hit you like a ton of bricks! I cried ALL DAY! I tried to protect my loved ones when I was the one who needed them. I called my mom that night and let her know how I really felt - scared, lost, SO SAD, and I cried to her. By the end of our conversation I felt better and like she said, "we'll get through this like we have everything else ... step by step, day by day."

I went through a lot of ups and downs over this for a couple of weeks. I'd sit holding Aiden and just cry for his loss. I couldn't imagine having a disability in an already hard world. Everytime I looked at him all I could think about was his hearing loss. It tore me up that he could not hear my voice, my songs to him, our family's laughter, music, the sounds of nature, our cat's meows ... I was scared for him. I had to keep reminding myself, he doesn't know what it is to hear, so he's not scared without it, I'm the one scared without him having it! I prayed and prayed and prayed for a miracle ... for that test to be wrong, but somehow knew deep inside, my precious baby boy was truly deaf. And while dealing with my sadness for him, I felt this huge guilt inside, constantly questioning what did I do during my pregnancy to cause this and kept wondering what I could have done differently.

After a few weeks, I started to feel more of a peace within me. My friend Jenny was huge support and helped me each day sharing a new resource (which I tucked away for when I was ready), sharing positive energy, sharing herself, and her busy time to make sure I was ok. She is amazing! Reaching out to more friends and family for prayers, love and support truly helped as well! I was happily overwhelmed with their responses and reading their emails/talking to them got me through my days and helped me realize I wasn't alone. I don't feel as guilty anymore either. Every once in awhile I still sit and wonder why, but I could drive myself crazy asking that question! Instead I focus on what I can do now ... there's no changing the past! Aiden was given to us - and I wouldn't change a thing about him! God sent me another message that reminded me how lucky I am. This was the day Aiden's hearing loss was confirmed, the day we went to hear that it was all "just fluid". When we got home, I was reading through the paper, looking at the obituaries (like I always do), and there was a newborn who passed away. His name was "Ayden Blake" and what's even more bizarre, is this precious baby was born the same day as my Aiden, March 17th, 2008. I cried for this baby's mom and said a prayer for her... again, how lucky am I!!!

I was sad for Aiden's hearing loss, but through all this, I couldn't be happier with the little boy in front of me! It's amazing the peace an 11 lb. little boy can provide! Everytime I hold him close, talk with him, sing songs to him, I know that even though he may not physically hear me, he knows my love for him, he feels it, he sees it, he senses it! They always say "actions speak louder than words" and how true that is to our world now! I am so blessed that I was given Aiden! Throughout my dad's dementia battle and taking care of him, I prayed for strength and God presented me with many obstacles, but I made it through. Was He preparing me for this? I'm guessing He believes I'm strong enough to take on Aiden's disability, and I will, head on, full force, and without a doubt, will be his strongest advocate; all while providing him with an atmosphere that he will always know how loved and special he is! I was meant to be Aiden's mommy and we will get through this - STEP BY STEP, DAY BY DAY!

Tuesday, May 13, 2008

Our Journey Begins

I started creating this blog after learning so much from reading blogs from other families with a hearing impaired child. I have learned so much from people I don't even know, yet feel so close to them all! I've never done this before, but I believe it will be good in my healing, good to keep family and friends updated on our son's journey, but more than anything, I hope this helps ease another family's worries who may go through the same thing we are. Now, Aiden's journey to hearing begins.

March 17th, 2008 - Aiden's Birthday! -I was induced at 9:30 a.m. and Aiden was born before lunch! The labor and delivery went great! We couldn't believe it when they told us our baby was 8 lbs, 20 in.! He had an Apgar score of 9 out of 10! We had a perfect little baby boy and he was absolutely beautiful!!

That day in the nursery, they came in and did a hearing test - I didn't even know this was required in Texas for newborns! As they performed the test, I saw looks of concern on their faces, "It's probably just fluid, we'll come back and retest tomorrow." Which they did ... same results, same answer, "Go home and enjoy your baby, give it a couple weeks for the fluid to clear up, then come back and retest." So we did just that - we took our newest bundle home and just enjoyed him. We worried a bit, talked about it here and there, but just knew when we brought him back, everything would be okay. How could it not?! We don't have any hearing loss in our family ... Ryan & Kailyn hear just fine (when they want to anyway!) But when we brought him back for the third test, he failed again. This time I cried and worry set in. They set us up an appt. with an audiologist and said "they'll do a better test, it may be just fluid!" Of course it was just fluid! This was the only option as far as I was concerned!

April 15th - First Audiology Appt. - I was wrong ... there was another option God had for Aiden, and that was deafness. On this day, my precious little boy was diagnosed with permanent profound hearing loss in both ears (meaning, if he was next to a plane on the runway getting ready to take off, he couldn't hear it). That day in the audiologist's office is still a blur and I get tears in my eyes just thinking about it. I had a good pregancy, a good delivery, everything was so right and all I could think of was "what did I do wrong?!" All I could think was they weren't right - how could they tell he was permanently deaf in both ears with just that one little test?!? They didn't even look IN his ears! Everytime I held my baby thereafter, I felt as though my perfect world with him was shattered.

I didn't tell many people at first, saying it made it real. One of the first people I did tell though was my dear friend Jenny (who is also the speech therapist where I work) . She set me up with a world of resources. She called everyday to share something new. She let me know, EVERYDAY, that everything was going to be okay. So I took this time to research and learn as much as I could. I emailed our audiologist and asked a lot of questions (who emailed back answers I DIDN'T want to hear!) The first week was a very hard one! I cried a lot ... everytime I held Aiden I felt a loss for him. I finally reached out to a lot of friends and family for prayers, love, and support and it was the best thing I could have done! They sent encouraging words, gave huge hugs, sent names & numbers of people who have been through similar situations. It was then that I started feeling more at peace and started having more good days then bad and coming to the realization that even with Aiden's hearing loss, everything is going to be just fine. (and still 4 weeks later Jenny is still finding me great resources, even if it is the lady working behind the Target register wearing an implant! : )What an advocate she is for Aiden! She is amazing!)

May 7th - ENT Appt./May 8th - 2nd Audiology Appt. - Here is part of an email I sent to friends/family that gives a good overview of these two appts. Oh what I've learned in the last few weeks! I feel like I could teach a class!!!

We had our appointment with the ENT on Wed. and then a follow-up with the audiologist yesterday. We really like Dr. Bauer, he was compassionate, yet straight forward and great at explaining all this as well as listening/answering questions. He did tell us that the ABR tests (the one that showed Aiden's hearing loss) are very accurate, and confirmed that Aiden is deaf in both ears. He also explained that Aiden's type of hearing loss (bilateral sensorineural profound hearing loss), is the type we want to him to have, if he is to have it. They believe that Aiden's loss has to do with the cochlear hairs being deformed (which transmit sound to the auditory nerve which then transmits sound on to the brain). They can fix this with a cochlear implant which takes the place of these "hairs". We won't know 100% if he is a candidate though until his MRI, which Dr. Bauer will do at six months (because of sedation). The MRI will show how his cochlea is formed as well as show if Aiden has the auditory nerve in both ears. If the auditory nerve is missing, he will not be a candidate for implants and will not hear (they say this is rare).

We confirmed his hearing loss yesterday with another ABR test and an OAE test (which showed again, that the loss is coming from the cochlea and makes him a good candidate for implants). They also fit Aiden for hearing aids, which will help his auditory nerve get used to sound vibrations (like working a muscle) as well as get him used to wearing something on his ears. They also set up a speech therapy referral, which we will start in the next couple of weeks. So all in all, since Aiden does have permanent hearing loss, these were positive results. If he is a candidate, Dr. Bauer will implant our baby's first cochlear implant around 12 months and he will start hearing soon after!

Ultimately we wanted to hear that Aiden's loss was due to fluid and they could fix it. We didn't hear that, and somehow knew we were not going to. We have been coming to terms with it all and know we are so lucky to have this precious little guy in our life - he is an amazing child!! How lucky are we - God gave him to US!

Please continue to pray for Aiden and that he is a candidate for implants and that we find the wisdom to make the best decisions for our baby and are his best teachers! I know Aiden will ultimately teach me so much more than I will ever teach him! I have so much faith and hope and just know everything is going to work out for our newest miracle!

So here we go ... opening a new chapter in our life, not only with the arrival of Aiden, but the arrival of an unknown. I know in my heart that everything will be okay, no matter what. God has given us a beautiful little boy who will be amazing and who will not be held back - as far as we're concerned, his world is wide open and he will achieve all that he wants without limitations! I will stop at nothing to always do what is best for him, just as I do for Ryan and Kailyn! Step by step, day by day, life is a journey, and this is Aiden's.

(Here is my bundle screaming loud enough to wake the dead (he doesn't like his hat!) and peacefully sleeping, which he doesn't do much of! Isn't he so cute!?!?!)