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Friday, December 30, 2011

It was the year 2011...

When I think back on the rollercoaster of a year we have had, the one thing that sticks out the most is how memorable of a year it has been for us. Of course, Hunter’s birth takes the cake by far… but the many many blessings that God has bestowed upon us are what make this such a special one for Blair and myself. The ever present support from our family, the loving words of friends, and the abundance of new people we have met this year are all things that have given Blair and myself the courage and strength to keep plowing forward with every decision we make.

Since I didn’t start this blog from the very beginning, I will try and summarize the events leading up to our decision to get Hunter Cochlear Implants.

Saturday, March 12th
I was at work (39 weeks preggo), as I was every Saturday morning during tax season.
Only difference was, I had actually dressed up and put makeup on :) Saturdays at the firm are usually casual, and don’t always involve a face full of makeup, especially when my face seemed to have doubled in size! Someone was preparing me for something big that day. As I got up from my desk to scan something, I felt something I had never felt before. Was it my water breaking? My heart starting beating out of my chest. As calmly as possible, I logged off of my computer and jetted (well more like scooted) towards the stairwell without saying a word to anyone! I immediately called Blair, who had just driven up to the golf course, and said meet me at the hospital… I’m not positive, but I’m pretty sure my water just broke! I told him to call our parents because I had to call my doctor. For a second I thought about running home to get my suitcase, but opted out, and headed towards the hospital instead. I tried calling my doctor on the way, only to find out that not only was she was out of town, but her partner was out of town too! So I was getting the third doctor in line... but what was I going to do…. Beggars can’t be choosers!

The answering service couldn’t even get a hold of him, so when I arrived at the hospital I went directly up to labor and delivery. I think they could tell I was freaking out inside when my voice was shaking as I said “I think my water broke, but the doctor won’t call me back.” They told me to remain calm, everything would be fine, and they immediately put me in a room. The rest of the day was one of the best days of my life. My water broke at 9:15, and I jumped from 6 to 10 cm while I was napping. At 3:05pm we welcomed into the world Hunter Paul Faucheaux. I knew he would change the world, I just had no idea how much at that point in time.

One of the best moments of that day was watching my husband stand over Hunter while they cleaned him off and weighed him. There was no question that went unasked. He wanted to know what every little gadget did and why they were using it. As he handed over our tiny 6 pound 13 oz angel, my heart absolutely sunk. He was perfect in every single way.




Monday, March 14, 2012
We were gearing up to head home as a lady with a thick accent and a small brown box walked in. She said she was there to administer a test to screen Hunter’s hearing. Little did I know that they did this to every newborn baby, just sometimes they do it in the nursery. As I held him and she stuck a wire in his ear, she kept looking at the box for some sort of response. She would adjust the wire, adjust her box, but still nothing. The pediatrician on call walked in and assured us that babies fail their newborn hearing screen all the time due to fluid in their ears, and not to worry. They also said that the vent in that room was louder than the others, and could have been interfering with the test. The lady asked if we had any deafness in our family, and my heart dropped. I proceeded to tell her about a first cousin of mine who has Usher’s Syndrome. He was born deaf and has progressively lost his eyesight. But it was just a little fluid, right? Not to worry. I told my husband, if Hunter is in fact deaf, it’s the minimal of potential problems out there. He is 100% healthy and that’s something we can work around. I still was not convinced that he was in fact deaf. There were too many coincidental moments in the following weeks where Hunter jumped when noises were made. But we had scheduled a follow up appt to retest him at Women’s and Children’s Hospital for Monday, April 4.  A day I will never forget for as long as I will live.

Monday, April 4, 2012
My mom had taken the day off so that she could come with me to Hunter’s follow up hearing test since Blair was at work. Just another check up, everything was going to be fine, right? Although only bits and pieces come to mind from that day, I remember waiting in the lobby for a good 45 minutes after our appointment time until they called us back there. I was a nervous wreck because I had nursed him just in time to be asleep for this appointment, with enough time to spare until his next feeding. And although our timing of the appointment was off, Hunter managed to stay asleep the entire time. I’m sure he knew Mommy had bigger things to worry about. As the lady administering the test attached probes to Hunter’s forehead and behind his ears, my mother held him as I sat near so as not to wake him up by transferring arms. The first test was a clicking of sounds sent through tiny wires to test for a reaction from the hair cells in Hunter’s ears. It felt like forever and a day while this was going on. Once again, there seemed to be no reaction as the lady was making sure there was no interference by any other electronics in the room. As she fooled around with every piece of equipment in there to make sure none of the wires were touching, I just starting choking up and couldn’t help but let the tears fall down my cheeks. My mom just kept looking at me with a blank stare on her face, which is very unlike her. If you know my mother, you would think she would have been right there with me with the waterfalls. But there was no emotion in her face, as Hunter lay there looking lifeless with 90db blaring in his ears and not a single reaction coming out of him. As the lady sat there studying her computer, all I could do was cry. Was this really happening? What about when the toilet flushed in the hospital room and he flinched? Or the door closing at home and he jumped?
She then turned to me and said, “Your son has a profound hearing loss in both ears”. This was greek to me, I wasn’t even worried enough before the appointment to google anything about hearing loss.
My response, as I was choking up so hard I could barely speak was, “So he is deaf?” and she replied “Yes, I’m sorry” She proceeded to try and comfort me as she said she believes a child not loved is more handicapped than one who could not hear. Boy, love was one thing this baby was not lacking!
Immediately my mom asked if this was something a Cochlear Implant could fix, and she said yes. She apparently had done her googling, and done a little grieving beforehand also… hence the no tears at the appointment. Which I know she did for me. I would not have been able to handle seeing her upset as well.
As I thought to myself, what in the WORLD is a cochlear implant, I knew I had to go out in the hallway to call my husband.
As he picked up the phone, he said he was walking into a meeting at a bank downtown, and all I could say, with as much strength in my voice as I could was “He’s deaf, Blair… he’s 100% fully deaf”.

The rest of our conversation is a blur, and when I walked back in the room I just asked to stay for a minute so that I could hold him. I just wanted to hug him, and protect him, and never ever let him go. I just sat there and cried while he slept in my arms.

When my mom and I got home, my dad came by for a while just to show his support. I told them I would be fine, I just wanted to be alone with Hunter until Blair got home. I just wanted to hold him, and rock him, and for him to never grow up and realize that he was different in any way whatsoever.
When Blair got home, he did the same. He held him with the same tears I had, tears for our son that he was missing out on the auditory world. It sounds weird for me to say, but we just felt SO sorry for him. Sorry that he didn’t even know what he was missing out on.

We received a call from our pediatrician that afternoon who had just gotten the results. We stayed on the phone for a good thirty minutes until we were both in tears by the end of the call. Hunter is her first deaf patient, so we were going to tackle this together head on. We also got a call from the lady with the Louisiana School for the Deaf that afternoon. And in this small world we live in, she is married to one of Blair’s old bosses, and we had met her a time or two. Her cheerfulness about our situation threw me off at first, but I guess we couldn’t be depressed forever. And it was her job to make sure of that.
Blair took off the next day and stayed home with Hunter and myself, just to kind of take it all in and be together as a family. We started researching cochlear implants and started to see a whole new light. I always wonder why I had never heard of this before. I was never really educated on cochlear implants because my cousin never got them, but the you tube videos of babies hearing for the first time said it all.

Thus our journey began to obtain Cochlear Implants for Hunter…

This year, I am going to picture a person who models what I am going through exactly how I would want a role model to show it, and my goal is to become that person.... I hope Hunter brings a touch of joy to everyone he comes in contact with this coming year, it’s going to be a memorable one that’s for sure!

Friday, December 23, 2011

Christmas 2011

Merry Everything and Happy Always!
- The Faucheauxs






Home for the Holidays

All some people want for the holidays is to be home with their family. Hunter went to the doctor yesterday with a cough, and they swabbed him for RSV which came back positive. Being that a majority of our family consists of babies, we were told to stay home so as not to spread the virus. I was pretty bummed, but all in all I am just grateful that Blair, Hunter and myself will be spending Christmas morning at home together!
He is stil very groggy but in good spirits for the most part. With Nana's help we are getting a lot done around the house, and Blair and I will rotate staying home with Hunter over the next two days so that we can go to mass and visit with family for a bit.
Hopefully by next Thursday when we go back to the doctor, all will be clear and he will be able to go back to the sitter!

Thursday, December 15, 2011

9 Months!

Happy 9 month birthday Hunter!
At 9 months you weigh 19lbs 9oz (40th percentile) and you are 30 inches long (in the 92nd percentile!). The doctor says you are doing very well and that your vestibular issues aren't as bad as she thought they might be. She did notice a little head lag was still there, but her report from Early Steps says steady progress, and that's a great thing. Now it’s time to start small with table foods, we can't wait to see how you do!
 You have started rocking back and forth on all 4s like you are about to take off! Mommy and Daddy are excited, but a little apprehensive that once you start, we know you aren’t going to stop!


You really enjoy eating any kind of fruit, although we have been trying lots of other foods like squash, zuchinni, and ham. Although puffs still seem to be a fan favorite!
J
You have been sitting up VERY well lately. You have started grasping toys with both hands while sitting up, so we know all of your hard work is definitely paying off.
You have been sitting up in the bathtub lately too! Once we get good at it, we will take the baby tub out
Your newest thing has been clapping, and we are getting a kick out of it.
Your favorite toys lately are Mommy’s phone and the remote control! They make great teething toys…
And last but not least…. We are gearing up for Christmas. Hunter has been a good boy all year, so hopefully he’s on Santa’s nice list J

Thursday, November 24, 2011

Gobble Gobble!



A Special Thanks from Dad

For months now, I have been promising Elise that I would post something on the blog. I figured that giving it is Thanksgiving, I would use this time to say a few words of appreciation. Happy Thanksgiving 2011!

Shrimp Boil
I want to start out by thanking everyone who helped with Hunter’s fundraiser. It is hard to put into words the appreciation that Elise and I have for what you all have done for Hunter. The fundraiser was as smooth as I have ever seen, and more tickets were sold than we could have ever imagined. This will help Hunter for a long time. To everyone who helped, contributed, purchased and donated… please realize that you are and will forever be a part of his long journey. Thank You!

Family and Friends
To the network of our friends and family, you have been our strength through Hunter's young journey and for that, we cannot thank you enough. Thanks for the love and the shoulder to lean on. Thanks for answering the phone, words of encouragement, clearing our minds, and accepting Hunter for who he is with open arms despite his challenges. Thank You!

Elise
Thanks for being who you are and the mother that you have turned out to be. Thanks for being a teacher, a therapist, a planner, a wife, a mom and a role model. Thanks for showing Hunter and I strength. We have been handed a gift in Hunter, one that does not allow us time to look into the rearview, but one that has us anxious for the future. We love you….Thank You!

Hunter
Thank you…thanks for teaching us love, strength, understanding and patience. God has given us such a precious gift by blessing your mom and myself with you, and I would not have it any other way. Until April 4, 2011, I thought it was my job as a father to teach you the world, but seeing God’s plan unfold, you are now teaching everyone around you a whole new world. Thanks for teaching us the face of love and what acceptance really looks like without words. I wouldn’t change a thing for the world, Bud! I love you!

-Hunter's Dad


Wednesday, November 23, 2011

Thanksgiving Tribute

In honor of Thanksgiving, we have posted a video of the Helping Hunter Hear shrimp boil fundraiser. We are so appreciative for the people who surround us. To those who bought tickets, sold tickets, spread the word, donated their services and time, those who donated to the cause, and to those who simply send their kind thoughts and prayers. We are forever grateful and humbled by your graciousness. God has blessed us with so many things in this world, for Hunter and for you all, we are especially grateful!

Happy Thanksgiving to you and your families!
- Hunter's Parents

Wednesday, November 16, 2011

The way sound is heard by a child with a cochlear implant

“I'll try to make a visual picture that relates to the way sound is heard by a child with a cochlear implant. Suppose that you have to identify a four-legged animal, and you’ve not seen that animal before, but you have to figure out what it is. Maybe you have to draw it. Maybe you have to learn the name for it. Now, that animal is standing behind a bunch of trees. To see that animal, you have to look through tree trunks that are hiding big parts of that animal. Now, if you were looking through those trees with the equivalent of a hearing aid, you could probably only see the tail end of that animal, because you could only hear the low frequencies with that hearing aid. With a cochlear implant, though, you could see pieces of that animal’s head, pieces of its neck, its legs, its body, and pieces of its tail end, but you still would be missing pieces in between each of those that you could see. The reason I’m bringing this up for you to think about is because it’s important for us to realize that children who are using cochlear implants still don’t see the whole animal. They see more of a range of that animal, but they have to use their brains. They have to use what they already know about the world. They have to use their cognitive abilities to fill in those gaps to be able to put together a picture of that whole animal. That’s the kind of task that a child is facing using a cochlear implant.”
Dr. Patricia Spencer. Considerations for the Future: Putting It All Together, Presented at
Cochlear Implants and Sign Language conference, April, 2002.

Ten on Tuesday

So I guess it comes with the territory of being a mom, but I had my Ten on Tuesday all ready to go and I forgot to post it last night! (maybe it's because H just didn't feel like taking his normal evening nap, I'm not sure). So I am posting on my lunch break today.

1. We never know the reason why things happen the way they do. But my heart goes out to my dear friend Brandi who lost her two month old last week. I guess God just needed another good to angel to be by his side. Please remember this family in your thoughts and prayers.

2.  Our special teacher went to see H at the sitter a few weeks ago and said she had him on all 4s and he actually balanced on one hand to get his pacifier. This is quite a step for him… gaining more and more strength every day.

3. The fundraiser that our friends put together this past weekend was an absolute success. The response was overwhelming, the people who came that day were amazing, and we cannot thank everyone enough to helped to make it possible. We are truly touched by the love everyone has shown to our sweet Hunter.

4. On Thursday, we went to New Orleans for them to administer an ABR (Auditory Brainstem Response) test. The ABR test evaluates how well sound travels along Hunter’s hearing nerve pathways from the ear to the brainstem. A device near the ear makes clicking sounds. Earpieces in ear canals conduct the sound and electrodes on the scalp/earlobes track sound moving through the ear to the brain. As expected, they gave a profound hearing loss diagnosis.

5. While we were there and Hunter was already sedated for the ABR test, they also conducted a CT scan on the brain to detect whether or not the cochlea bone was correctly formed. In order for Hunter to receive the implants, the cochleas in both ears have must be free of any malformations. After a long weekend of awaiting the results, everything looks normal! (even though the chances of malformations was less than 1%, you just never know!)

6. We haven’t seen our PT in about a month, and tomorrow we have an 8am appointment with her. It’s not H’s best time since he usually wakes up around 6, and seems to get a bit cranky by 8. But we are hoping for a successful appointment! (PS. Since I am posting this on Wednesday, he and I actually took a mini nap after my bootcamp but before therapy which really seemed to help! Phew!)

7. Our OT is coming on Thursday, and we are thrilled to be able to show her how long Hunter has been sitting up for on a daily basis. He is still wanting to lean forward and is not really able to balance himself without his hands. But he is trying to grab at most everything he sees, and testing out his balance with one hand when he wants his pacifier or to shove the remote in his mouth J

8. Hunter turned 8 months on Saturday, I cannot believe my baby boy is getting so old. I feel like it was just yesterday we were finding out the gender of our little man!

9. So what next? I just heard back from our audiologist at Ochsner’s. The next step is to submit the authorization form to the insurance company for pre-approval of surgery for the implants. She said once it’s submitted that it’s a waiting game from there. I am hoping to have an answer before the first of the year, but it will be up to them once it’s submitted!

10. And yes, are looking to get both ears implanted on the same day, and hopefully that will be his first birthday 03/12/2012!


1.

Tuesday, November 8, 2011

Giggles Galore!

Too good to not share! He is loving his new car seat :)
(PS. Video will not show up in email, only on the actual blog)

Thursday, October 20, 2011

Hunter's Hard Day at Work!

We are so proud of our little man, we had a very successful yet tiring, and I mean VERY tiring OT appointment today! As I said before, we are working hard on sitting up, and Nini the sitter has been too. Today, he performed for us all!
See pics and video below. If you can't see it in the email, click on Angelicears at the bottom of your email and wait for it to load on the blog.

Showing off those sitting up skills!



And then he completely passed out in the middle of OT!

video


Tuesday, October 18, 2011

Ten on Tuesday

1.      The fall season is such a great time of year, we are loving this football weather and gearing up for Halloween. H is going to be a golf caddy this year, with a plastic set of clubs and all! We will definitely be posting pictures soon!
2.      I met with our Early Steps case manager and Hunter’s PT, OT and Special Teacher on Thursday for our 6 month meeting. We set new goals and wrote a new plan for the next 3 months.
3.      We decided to add an extra session a month with the OT (so she will be coming twice a month), we are decreasing our PT to once a month for now, and our special teacher will add a session a month and go visit H at the sitter’s house during the day.
4.      One of our short term goals that was written in the plan was for Hunter to get good head and trunk control. We are leaps and bounds beyond the head lag that he used to experience, but arching of his back is still what he likes best!
5.      We are also striving towards Hunter being able to activate toys on his own. Pressing buttons to get toys to light up, and getting the whole cause and effect concept.  
6.      We had a PT appointment on Thursday at 8am. This is not the best time for Hunter because he is usually tired and just about ready for a nap, so it was hard to get much out of him but we have been working on bearing weight on those shoulders and getting him comfortable with that. We have also been trying to put him in a sitting position to get him comfortable bearing weight on his arms and hands. This is not something that he particularly enjoys, so we are doing this baby step style.
7.      This past weekend, my husband and his mom got to meet a very special little girl from Breaux Bridge who is three and has the cochlear implant. She and her mother just so happened to be at the cook off in Loreauville, and Blair was thoroughly impressed with the little girl’s language skills. She too goes to Shelley, our AV therapist, in Baton Rouge. Meeting her was so reassuring and gave us even more confidence in our decision to stick with the auditory verbal approach.
8.      We had a sound booth test done a few weeks ago when we were getting new ear molds made for the hearing aids, and Hunter did not seem to react much to the high pitched sounds, but may have been getting some of the low pitches. There were no head turns or anything, but she could tell if he started to fuss, she would turn the low pitches on and he would hesitate a bit.
9.      Shelley encourages reading books to Hunter while his hearing aids are in. The closeness of our mouth to his ears allows us to speak normally and not distort the sound by yelling. And if he is getting anything from our voices, it’s stimulating that auditory nerve and prepping the brain for the implant. Therefore, we try to get story time in as much as possible. And with this beautilful weather we have been able to read outside too!
10.  Phew, that Ten on Tuesday was a little harder than I thought. Many other blogs have Ten on Tuesday, Wordless Wednesday (just pictures), so I am going to try a few of these ideas and see how that goes! Have a great week everyone!

Friday, September 30, 2011

Our week...

What a week it has been!

First of all, Blair and I cannot put into words how touched we are that you all are choosing to support our baby boy on his journey to hearing. For those of you who aren’t aware, some very special friends of ours have decided to put on a shrimp boil fundraiser called “Helping Hunter Hear”.

The word has spread like wild fire thanks to all of our friends and family, and even those we’ve never met, who just want to help give Hunter the gift of hearing. Every time someone forwards me an email with the flyer, and I see how many people had forwarded that email before them, I literally get choked up. Being from a community like Acadiana goes to show you how incredible small communities are, and how they come together at the drop of a hat. Many many thanks to those helping put on this event, to those driving around selling tickets, and to those of you spreading the word. We are forever grateful for all of your time and effort. The gift of hearing is something so special, and Hunter will achieve many many goals thanks to all of you.

Secondly, we started seeing Hunter’s occupational therapist last week. She was amazing, and we all loved her. She gave us some really great new ideas and exercises to help Hunter get comfortable trying to sit up. We think he just really had no idea that his hands and arms are there to help him balance. He was doing SO well, I think our jaws dropped when she was only helping stabilize his hips, and he was using his own arms to balance himself. Of course, since she has left, we have a hard time getting him to do it for us. He luh-huvs arching that back, so we really have to catch when he’s in a good and relaxed mood.

We also saw the physical therapist this week, who gave us even more new exercises to do with Hunter to get him used to the idea of sitting up. We have also started using our exersaucer a little here and there. We put a blanket at the bottom (which recently turned into Reese’s new “spot”) so that his feet are touching, and we have to put a pillow behind him to keep him stabile. I think he really likes all the toys and different colors. Sometimes he likes to lean his little head on the animals… so we take him out when we think he is getting tired :) We don’t want him in any position for too long. Between the swing, the boppy, the bumbo, tummy time, the exersaucer and side lying… he is constantly moving!

On Friday I met with Shelley, the AV therapist for more information on auditory verbal therapy. This was my first session with her and I really admire her and her techniques. She said reading to him right now is one of the best things we can do. Since our mouth is so close to his ear when he is on our lap, it doesn’t distort our voice (such as if we were to yell across the room, or talk louder if he was lying on the floor), and the pictures just get those eyes and brain cranking! So we make every effort to get our story time in!

Thank you all for following- have a great weekend!

GEAUX CAJUNS!!!!


Thursday, September 22, 2011

It's Our Life

My mother in law was reading the blog the other day, and she texted me to tell me how inspirational she thought the blog was. She is so glad that Blair and I ended up back together, and she knows that Hunter was sent to us for a very special reason. Now as much as I agree with her, because Hunter was perfectly made for Blair and myself… we were no more special than any other husband and wife, until we were given the blessing of Hunter. Although I have to say, my husband and his mother, have always been exceptional care givers for those with special needs. My mother in law has been driving a special needs school bus for 28 years and counting, and has always had a place in her heart for those with special needs. And my husband’s best friend growing up had muscular distrophy and was confined to a wheel chair. I remember when we used to date in high school, they would call him just to go and move his friend from his chair to his bed, or wherever he needed to go, and Blair was happy to help. Then when my husband was merely 14 years old, he suddenly lost his father. This tragic event forced him to immediately become an adult, and the man of the house with two younger siblings. And growing up, my parents instilled life long morals that will never be forgotten. I have been given this life, and I happily accept it with open arms because it’s how I was brought up.

Being parents has changed our lives, but being Hunter’s parents has brought so much more to our lives. It’s life. Our Life. And life is what you make it. Although we have both at some point looked for the what ifs and whys, we got over it about two days after we found out he was deaf. We are just living the life we were given. We strive to do all things possibly to help Hunter maximize his potential. Then we just…. Be.

We are entrusting Hunter’s life into God’s hands, and we wouldn’t change a thing. We don’t always feel like going to church on Sundays, and dedicating an hour of our time to God, but we do it. We do it for Hunter, and we have made the conscious effort ever since he was in the womb to dedicate that hour a week to God and to our son. We thank God for this tiny miracle, and pray that His will be done. God has a special plan for Hunter, we are just blessed to be able to witness that plan. So hug your children a little tighter tonight, and thank God for what you have been given. Life is truly precious.



Thursday, September 15, 2011

6 month video

I noticed in the update email, you cannot see the video posted to the blog. But if you go straight to the blog, the video is under the 6 month post, it just takes a few seconds to load. Enjoy!

Wednesday, September 14, 2011

6 Months

video

My God, you have seen fit in the depth of your wisdom that our child should be denied abilities that children normally have. I know that, however hidden, there is a wise providence behind this and that this providence is good. I know, too, that a child who is less privileged is a special trust given to a mother and a father, requiring special patience and love. So as you have committed this trust to my husband, to me, and to our family, dear Lord, please give us the wisdom to know what to do properly for this child. Guide us that we may in all things do what is best and so act in accord with your gracious providence, which is always a providence of love. Amen

Sunday, September 11, 2011

It's September already???

People keep asking since the last post how the new sitter is working out. We are very grateful to have her, she has been very good to Hunter so far. The first day mommy was a little emotional, it was like dropping off my baby for the very first time (during which I actually did not cry!). But this was just a little different. I knew her, and had great personal references from people we have recently met, but I didn't have personal references from people I have known for years. It just made mommy a little nervous, but as I have said before, it was harder on me than it was on him!

The second day we had PT at 8am, which was a little rough on everyone. We thought the PT might work with us, and see Hunter at the daycare at least one time a month, but she said it is not in her vacinity and would be too far of a drive for her. That in itself is just a little upsetting to us all since Nini, the new sitter, welcomes and wants therapists there to help her and show her what he needs to work on. We have sent out a request to our Early Steps case manager that if there are any openings with PTs that work in Vermilion parish, that we would definitely like to switch. For now, we will be relaying the information.
The PT session was a little rough on H. He still is not able to support himself on his stomach using his elbows. He simply LOVES arching his back and just flat out does not enjoy being on his tummy. We work and work and work, but I truly believe it's something that just isn't comfortable for him and may never be. But the fact of the matter is, whether it's comfortable for him or not, he needs to spend more time on his tummy. Therefore, the last session involved lots and lots of  screaming and tears. I thought I was going to be strong, if it's what he needs, it shouldn't bother me that it upsets him. But this time was different. I knew he wasn't in pain, but he was definitely screaming like we hardly ever see. It's just sad to watch your baby cry and cry and cry, but I held it together, mostly because I knew he wasn't in pain. He was just uncomfortable. But he needs to become comfortable in that position or else he will not sit up any time soon.

Nini reassured me that with time, it will come. As is with everything else. It took him a little longer to hold his head up, but he did it. Like she said, when was the last time you saw a deaf baby who didn't sit up or crawl? And it's so true. I like her more and more, she makes me feel better because she spent day in and day out with a deaf baby who defied the odds. And we know Hunter will do the same :)

On Thursday we had a play session with our special teacher through Early Steps, and she is glad Hunter is still so vocal and making different sounds now. We are encouraging it and praying it doesn't stop.

And last but not least... on Friday, Blair, Hunter and Pappy saw Shelley, our AV Therapist in BR. (Mommy had a virus). But the session went very well. She is proving to us more and more that the Auditory Verbal approach is definitely the way for us. Hunter will stay back for the next few sessions, because for now she is educating mommy and daddy so that we know everything once he gets the implant. Not much detail on these sessions, but they will really gear up once Hunter gets activated after the implant.

We have uploaded a few new videos and added an updated 6 month picture from this past weekend on the main blog page.

Hunter turns 6 months tomorrow... we can't believe it! With all the new babies in the family, Hunter isn't the baby baby anymore!

Sunday, September 4, 2011

Signing- for now!

Thursday night, Nancy with the Louisiana School of the Deaf, came over for a meeting and talked strictly signing. She said is it time to start doing it constantly without hesitation. Granted, we are only started with baby signs for now… milk, more, eat, sleep, change diaper, mom, dad… but around 5-6 months is when babies generally start concentrating on what the hands are doing, and then they start to immitate the signs. We are on top of it and ready to become quite fluent. The signing vs. no signing is kind of a controversial issue, but neither way is a wrong way, it’s what each family decides is best for them and their child. Since we have decided to start seeing the certified Auditory Verbal Therapist, once Hunter is activated, we will keep the signing to a minimum so that he doesn’t fall back on signing rather than really trying to learn to hear and speak through seeing. As Nancy said, we can change our methods if something isn’t working out, but for now this is the route we have decided to take.

Also, big news…..we are starting at a new babysitter on Tuesday! Not that we don’t love Ms. Darla, because she has been SO good to us. But we found a lady in Maurice who was sitting for a child, Mia, with the CI. This little girl has been going to Anita, “Nini” since she was 2 months old, and she is now 4 years old and is going to be mainstreamed. She listens and speaks so well that she scored above the level to receive free services in the public school system. Nini learned sign language with Mia and all of her hearing kids also sign as well. She is also very familiar with the Early Steps therapy and allows them to go into the daycare during the day. She probably knows more about all of this than Blair and I do. And she incorporates the signing and the therapy into everything they do during the day. When I spoke with Mia's mother, she said her daughter would not be where she is today if it were not for Nini. It’s a big curve in the road for us, but definitely something that will benefit Hunter in the end. He won’t be with his cousin or current buds at daycare, but he will definitely make new friends who are hearing and already know how to sign, and hopefully he will be caught up enough by the time he is ready for school to be mainstreamed.
Nini’s house is in Maurice, but just so happens to be on Blair’s way to work every morning and afternoon, so he and his daddy will do lots of bonding during the car rides! Although mommy wants to bring him his first day, or two J

Other than that, he has been babling up a storm, laughing, rolling over and he just started holding his own bottle. Now that our weekends have slowed down and we aren’t going to be out of town this weekend, we will be testing out our first round of baby food (besides cereal)! We can't believe our baby boy turns 6 months old next Monday, where has the time gone?

Thank you all for your continued love and support, we could not do it without you all!

Monday, August 29, 2011

Picture Updates

Hi everyone! Just posting a few pics for those of you not on facebook. Will post more about Hunter's progress soon :)


Monday, August 8, 2011

The Beauty of Holland

As the mother of a deaf child, I feel as though the sharing of this poem is similar to an initiation into the worldwide group of mother's with deaf children. Enjoy.
 
The Beauty of Holland

"I am often asked to describe the experience of raising a child with a disability-- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

"When you're going to have a baby, it's like planning a fabulous trip--to Italy! You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You even learn some handy phrases in Italian. It's all very exciting.

"After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, 'Welcome to Holland.' 'Holland?!?', you say. 'What do you mean Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy.'

"But there has been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

"So you must go out and buy new guide books and learn a whole new language. And you will meet a whole new group of people you never would have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandt's.
"But everyone you know is busy coming and going from Italy, and they're all talking about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'

"But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland"

--Emily Perl Kingsley

 
Things that we have learned since April 4, 2011:
the day I called my husband from the audi's office to tell him our son was in fact deaf.

ask every question you can think of. (and WRITE down all the answers)

it can only go up from here.

challenges like these only make us stronger.

differences are what make us all unique indiviuals. embrace those differences.

this experience has taught us true compassion.

we are blessed with a good, loving and healthy baby and will never take that for granted.

we are not alone.

be patient.
but never give up.

as much as I love Italy, and as familiar as I was with the country... Learning Holland has been a growing experience for all of us.

take it one.day.at.a.time.

Monday, July 25, 2011

Are the hearing aids helping?

Everyone keeps wondering whether or not the hearing aids are doing anything.... here is your answer :)

We had a great trip to the audiologist today, and H fell asleep on the way home so I will try and update everyone while I have time!
We thought we were going in to get new molds for the ears since he outgrew his by the time we went to pick them up, but apparently they were not in yet. GRRR! It's okay though, these seem to be doing the trick, especially with the toupe tape holding the main part behind his ear.

We did get to do a sound booth test to see if the audiologist noticed any type of reaction from him. I was holding him facing outward, and there were noises coming from both directions. On the left there was also a light up winnie the poo, and from what I am told he would look at the light up toy when they would flash it, and then when they turned it off and put the sound through, he would look that way again. I don't think it was mere coincidence because there were two audis and they said they tested high and low frequencies multiple times and he looked that way multiple times. I tried looking at his reflection in the mirror, but could not tell myself whether he noticed the sound. They both said they got more than they were expecting, so that is great and means he is getting some stimulation to the brain through sound.

My pressing question was, does this affect his candidacy for the CI, but they said no. What he hears is very little in comparison to the amount of sound the CI will allow him to hear. Once we get the new molds in, hopefully they won't fall out as much. Thanks to our sitter for constantly putting them back in, I know it is a hassle just from the past two weeks.

Wednesday, July 13, 2011

Hearing Aids are in!

Our baby boy was once again an angel for his hearing aid fitting today. The audiologist wanted to do another ABR test (hearing test for any brainwave response to sounds), so that she could do a range of decibals and frequencies to get a more detailed report. He needed to be asleep for this, and he just so happen to fall asleep as we were walking in and slept like a rock for the entire 15 mintues, then woke up immediately when they were done. Here is a picture of him during the test.

We then went in to get the hearing aids fitted. The molds that we got fitted for two weeks ago are already a little too small. So we will be getting new ones soon, but will be able to use these for now. From what I have heard, babies grow out of them pretty quickly! The hearing aids also have a lanyard in the back that clips to his shirt. This is in case he pulls them off so that we don't lose them! There are no tests that can detect brain waves in response to sound from hearing aids, so Blair and I will just watch closely and see if he is reacting to anything. We go back in two weeks to see how he is doing with them, and they may try loud pitches to see if he reacts at all. But it's not until 6 months that they can really see a head turn in babies reacting to sound. It's highly likely that the hearing aids are stimulating the brain, so we are going to keep them in as much as possible. I think his brain is probably getting sick of the light up toys that we stick in front of his face 24/7 to double up on the visual stimulation! Keep in mind, we are still pursuing the cochlear implant, this is just one step (and requirement) to obtain the CI.

We are still getting a lot of screeches and more and more laughing everyday. We are so blessed to have such a happy baby. Here are some pictures of H with the hearing aids on, I think he likes them :)




Saturday, July 9, 2011

Hunter's "Ears"



Audio Diagram
 


Cochlear Implant
 













Many Friends and Family have had questions about what an implant is, why he needs one, and how does it work? I will do my best to explain...

Normal hearing is about 10-20 decibels. When Hunter was tested he was found to have Profound loss bilaterally(both ears). Hearing aids amplify or make sounds louder. If you have a a hearing loss, amplifying sounds can help you hear them....the inner parts of the ear work and are getting the messages to the brain if it's loud enough. When the loss is severe to profound and or there is a problem with the cochlea itself, simply making things louder doesn't help.

Thursday, July 7, 2011

Initial Ochsner's Visit- 05/13/2011

It's as if Hunter knows when the important days come around, because he always acts like an angel :) Our road trip with Daddy and Gammy was quite successful, and we even got to visit with Nana and Pappie while Pappie is recovering in the hospital, and looking great I might add!
Our appointment started with Hunter and I sitting in a sound booth, a routine procedure that the audiologist has to perform on Hunter just to make sure she doesn't get any reaction out of him. It mainly consisted of high pitched sounds that would cause a hearing baby to jump due to the loudness of the sounds. But as expected, Hunter did not react to the noises.

Early Steps Intervention

Monday, May 2nd, I had a final meeting with Early Steps to write a care plan for Hunter. This program is incredible. I am shocked at how much they have to offer not only Hunter, but for Hunter's daddy and myself. For those of you who have never heard of Early Steps, it's a program funded by the state for children with disabilities from ages 0 - 36 months free of charge. I never knew it existed, and it is such a wonderful thing! We will have a physical therapist and a special teacher come into our home once a week to work with Hunter and to teach Blair and myself how to "play" with Hunter. Being deaf sometimes affects other things in the body such as delayed head control, crawling and sometimes walking (amongst other things). So the PT and teacher will show us things that we can do to work with Hunter on a daily basis so that he does not fall far behind other children his age. We are ecstatic to learn and work with Hunter so that he can keep up with all of his new cousins being born this year!