This just happened....

Today was Hunter Paul Faucheaux's 1st day of Pre-K 3! It's a full time class, 5 days a week that goes from Pre K 3 through 3rd grade. What an amazing and beautiful journey he has been on to have the ability to be mainstreamed and to attend the same little private school I did when I was in elementary in New Iberia. If you remember our summer trip to PA to see St. Katharine Drexel's shrine with Mrs. Karen, the principal of St. Edward, you know that St. Katharine Drexel founded St. Edward School. And Mrs. Karen has upheld her image and her spirit in everything that they do at St. Edward's.

I have to say I am one proud mama. It took a village to get Hunter where he needed to be, and I mean a village. From everyone in our family who cheered, and prayed, and babysat, and drove Hunter to Baton Rouge, to all of his therapists and everyday caregivers. And to our friends. I know Blair and I would still be standing today without our friends who gave us the courage to push on when we didn't think we could.
This picture right here is worth a thousand words!

Seeing the world

I just watched a video of a little boy named Hunter who died of cancer this year. He loved the WWF and got the chance to meet his biggest hero and "wrestle" on stage with him, and after one of the real fights that the wrestler won, he went up to this little boy Hunter and thanked him for the strength he gave him to keep pushing and asked him to fight just as hard. Whoa. What a tear jerker.

I don't know if it was the fact that his name was Hunter or just the whole kid cancer thing that gets me every time, but I couldn't help but think about those make a wish kids, the Kidds' Kids trips, the opportunity to give children with disabilities the chance to experience things they otherwise may never have been given the chance to experience. One little boy on the Kidds' Kids trip this year went because he is losing his vision, and the parents wanted him to be able to experience Disney World before he went completely blind. Well just this morning, I got an email for the Cochlear Celebration that Cochlear America puts on every other year in Disney World for recipients and families of people with Cochlear Implants. It's more of a seminar for families but they have special events planned for the children as well. And when I sent it to Blair to see if we could go, he said yes right away. And to be honest, I was shocked. Sometimes when we are debating taking the kids places, we decide it's just easier to stay home with the ages that they are. And I was sure he would say the same thing about this opportunity. But I'm so glad he didn't.

I think I keep holding on to the idea that there will be a cure before Hunter loses his vision, but he's 3 now, and as quickly as those three years have passed, another five will be under our belts before we know it, his vision may start to deteriorate, and we won't be able to turn back time. I just don't want to wish we would have done more with Hunter if there is no cure by the time he starts to lose his vision. I once overheard Blair telling a friend that he wanted to be able to take him hunting at an early age so that he can experience the joy Blair does of shooting a deer before he loses his vision. (Sorry for those not from South LA, but it's a huge thing down here. Hunting is in Hunter's blood, whether he wants it or not.) And if you ask our friends and family, we really never.stop. We always have something going on. The first few months after Harrison was born, we stayed home more than ever. And it was kind of nice for a change, but I will tell anyone, I'd rather spend money on traveling and experiences than on clothes and shoes and things that don't create memories for a lifetime. (Yes, I still buy clothes). But if I don't take a flight somewhere every 6 months or so, I start to get cranky. And I am grateful for our support system, for our family members who help us make these things possible, and those who also provide great experiences and great memories for Hunter. We couldn't do any of this without them.

We can hope and wish and pray for a cure, and we can have all the faith in the world. But we can't turn back time, and I don't want to regret not making the most out of the only memories Hunter may potentially have of seeing the world.

Thank you all for listening, it's been an emotional day from the 4:45am start, and after watching that video, I needed to write and let out a good little cry. I just write a lot smoother when I am crying ;)

This dude finally let me put a hat on him when the sun was in his eyes Sunday afternoon :)

elise

Hunter's 2nd Hearing Birthday

This past Sunday, April 27th, 2014 we celebrated Hunter's 2nd hearing birthday. I posted the picture below to my instagram stating how surreal his hearing world is to us. His language, his personality, his energy... I attribute it all to that one tiny miracle we were able to provide for Hunter. Without his CIs, I do not believe Hunter would be the outgoing, funny and blossoming boy he is today. We are so thankful for the gift of hearing.

 

2.5 Year Speech Evaluation

Since Hunter has been attending AV therapy every 2 weeks for the past few months, it has taken a couple of months to issue and score his progress tests, but we finally got the results back last week and I wanted to share them.

Hunter was issued a general language test, an articulate language test, a receptive vocabulary test and an expressive language test.

For every language test, 100 is dead average. Anywhere between 85 and 115 is average. On the articulate language test (which is expressing oneself easily in clear and effective language), Hunter got a 93, which is in normal range. He got 28 errors which is perfectly normal for a 2.5 year old. And that's a normal hearing 2.5 year old, not a 2.5 year old born deaf.

His vocabulary test, the receptive vocabulary (vocabulary that he understands using pictures, and what he understands from what other people are saying). 100 is average and he got a 108, which is 8 standard points above average.

Then there is expressive vocabulary (show him a picture and say what is this). 100 is normal, he got 121, 21 standard points above normal, so he did exceptionally well on that.

Last test was overall language, it’s a little broader than just vocabulary. It’s his ability to put words together, grammar, sentence structure, just a more broad view of his whole language development. It involves auditory comprehension and his expression, what he’s able to produce himself. His understanding, expression and total all fell above the average line. He got 111, 11 standard points higher than normal so all of his scores are looking very good.

Hunter's AV therapist tells us that he seems to be right on track.

There are certain letters that he would say at the beginning of a word, like a w for an r, which is normal for a 2.5 year old. He says w for L. But those don’t development until much later. At the end of the word he would do a k for a g, which is normal as well. Nk for ng, sh for ch, and t for j at the end of the word is appropriate for his age.

Even though we got the great new that Hunter has "graduated" from AV therapy at this time, we agreed to have a couple more sessions in order to transition his therapy sessions to take home therapy ideas to keep up with Hunter at home.

Shelley (our original AV therapist) called in to talk about Hunter’s progress, and she said Hunter’s vocabulary scores are probably her highest ones yet. She acknowledges our support system and all of the people in Hunter’s life who are so involved in his progress. She complimented us getting on board right out of the gate, not hesitating about the implants and the therapy, and making it a part of our everyday lives. Almost every person in our family has joined in on these sessions and they know what kind of conversations to have with Hunter and the questions to ask him to constantly keep him moving forward. And even though Hunter’s sitter wasn’t 100% on board with strictly AV therapy, she has really come around and pushed Hunter further than any of us.

She did warn us that testing of a 3.5 year old varies greatly from a 2.5 year old. A 2.5 year old should understand around 500 words, and at 3.5 it more than doubles to around 1200+ words. She said not to get comfortable that he is all caught up and to keep reading to him and keep teaching him. She said a 2.5 year old and a 3.5 year old have totally different expectations.

They want us to know what to expect and to know what to look for when we are reading to Hunter every day so they will give us the tools to know what to expect. She doesn’t expect him to move down from the normal range, but if he does it may be because of how much they expect out of a 3.5 year old. She just keep stressing not to stop doing what we are doing.

One thing going for Hunter is that he has a fantastic memory. When we read him books, the following week he is reading bits and pieces from the book back to us. We can tell he isn’t actually reading the words because he's not even looking at the words, but he remembers bits and pieces from each page just from the repetitiveness of hearing the book for a week straight every night.

I always get nervous when people ask me where Hunter will be going to school and when he will start. #1, he’s my baby and I’m NOT ready for him to start school. Or even a preschool at that. A lot is riding on Baby Harrison and whether or not he is hearing. As most of you know, our 5 year plan includes building a house in New Iberia near my parents and Blair’s. But if Harrison needs implants like Hunter, we would like for him to stay at Nini’s for at least 2 years so that she can help us get him where he needs to be. She is irreplaceable and 100% worth staying in Youngsville for that period of time if need be. Being near family is super important to Blair and myself, and we know we will get there eventually, once we make sure our children are where they need to be. If we do stay in Youngsville for another few years, I would like to look into putting Hunter in a preschool starting possibly in the fall. But these are all factors that will be decided after Harrison is born. Again, he has a 25% chance of having Usher Syndrome like Hunter, and whether or not he passes his newborn hearing screening in the hospital will tell us, obviously, whether or not he is deaf, but will paint the bigger picture as well as to whether or not he will have Usher Syndrome.

Shelley also mentioned an amplification system that a lot of preschool teachers use when they have a hearing impaired child. It’s a very little amplifier that makes a world of difference to bring the teacher’s voice above everyone else’s in the classroom. It’s a little uneasy that we have to start thinking about this, but it’s a part of the Cochlear implant process and just comes with the territory. As amazing as this device is, it’s still a device. It’s not a natural form of hearing or anything close to that. It’s Hunter’s way of hearing, and a classroom setting is not something he has had to adapt to yet so it’s going to be a way for Hunter to have to really concentrate on the teacher to be able to hear what’s coming from her mouth with a lot of background noise going on at the same time. He has always been in a smaller setting (in-home sitter) with not a lot of children which was exactly what we wanted when he was learning to hear and speak. The next step, is learning how to hear in a crowded environment on an every day basis. He will have to learn to differentiate the teacher’s voice from other children’s voices, as would any hearing child, it just may take a little longer for Hunter to master this skill that seems second nature to his hearing peers.

I will be posting more soon, including recent family pictures :)

Sorry it has taken me so long to post an update, but as always, thank you for being a part of our journey!

elise

Hello, Summer!

This past week Hunter took swimming lessons all 5 days. The beginning was a little rough, on all of the children. It was 4 two year olds, so there were lots of tears and lot of "Mama!!!!" being yelled from the water. But everyone did so great and by the end of the week you could tell they were more comfortable in the water than they were at the beginning of the week. And being that my parents have a pool, we were insistent on having some sort of swimming lessons. The biggest thing Hunter learned during this week was how to grab on to the side of the pool, which could be a life saving move! Hunter took with his cousin Kell, which we thought would help to have someone there he knew.

I was a bit nervous because we were going to be taking his ears off to get in the water. We have been taking them off at my mom's but this was a new person he had never met before. And every time he was waiting for his turn, like a broken record Hunter would say "Kell turn" because he did not want to be next! But by day 4, he finally started saying "Hunter turn", even without his ears on. The instructor would tap him 3 times before he would go under, or count to 3 with her fingers. Then she would blow in his face so that he would hold his breath before going under. I told her to give him a thumbs up when he came up from the water because he's a big fan of the thumbs up and good job. And even in the middle of his screams he would give us a thumbs up. And when he saw me videoing him, he would even say "Cheese" in the middle of screaming and trying to hold on to the wall!

Here are a few pictures from the beginning of the week:

Here are Day 4 videos:

And here are a few pics and videos from Day 5!

He felt a lot more comfortable during Day 5 and even this past weekend on my mom's house.... he was entirely too good to just sit on the steps anymore. He was like a little fish! 

Oh and we insist on sunglasses at my mom's every time we are in the pool. We ALL wear them together!

CI Mapping 05.10.13

Hunter, Blair and I hit the road Friday, May 10th for a mapping appointment with Mrs. Tanya at Ochsner's in New Orleans. Our last appointment was in January and she did not change any of his settings. She wanted us to go back in 3 months (which ended up being 4 because of tax season) just to check in on things again. The one piece of advice I will never forget when first researching Cochlear Implants was to have them mapped (programmed) as often as possible. So I am definitely not opposed to making the trip, even though we were most likely not going to change anything. She asked if we were having any problems, plugged his ears in to check to the programs, made Hunter say a few things, hit the sound booth for a minute and we were done!

Here is a of video from the sound booth after the appointment. They play a low sound from either the right, left or front and Hunter has to look. Once he looks they turn on the lights and a louder noise, like a rabbit playing a miniature drum.

Hunter's 1 Year Hearing Birthday 4/27/2013

To all,
We have reached the 1 year mark, the most exciting 1st year with so many milestones I can't even begin to express how grateful we are for Hunter's ears. It has changed his world while he has changed the world around him. The joy and laughter and words and sentences, yes sentences, bring a smile to my face that only the mother of a child born deaf can understand. Hunter still amazes us every single day. His memory blows me away. The things he picks up on constantly makes me wonder if we are challenging him enough.

Oh and a few things I don't think I ever addressed on here. We now just have to travel to Breaux Bridge for therapy on Wednesdays instead of Baton Rouge. The Chesney Center hired a therapist who drives to Breaux Bridge once a week to meet with their patients from the Acadiana area. Also, we switched out the color of Hunter's coils from tax to brown and they blend much better now!

Here are a few videos from Hunter's AV Therapy session last week. They just make me smile big big!

Blair and I tried to compile a list of new things he was saying last week and here are a few of them:

Good job buddy getting ball

Daddy where are you?

One, two, three throw!

Ready, set, go throw

Bye dogs see you later

Boat pass pappy house

Close door nana house

See you tomorrow

McDonald's french fry with Gammy

I love you more

Nice to meet you

Go get towel mommy

Get Icee Friday?

Mama play bubbles outside

Now this was probably two days worth of things from last week and I haven't even had a chance to write down new ones from this week, but he just keeps stringing new words together every day! He has even started saying Thank You without being prompted and his use of the word please has increased as well! 

Thanks to everyone who constantly works with Hunter, he has made progress like I've never imagined he would. We are so grateful to be blessed with such an amazing support system of friends, family and therapists. 

Here are a few recent pictures as well.

And one from his hearing birthday:

Hunter- 23 Months Old

So here’s an update that’s long overdue…. And it’s a long one.

Blair turned 30 on January 5^th. (he’s old!) On that very same day, Hunter put his magnet back on his head for the very first time by himself while we were at the Little Gym. It was soooo exciting for us both! I meant to blog about this a while back, but Blair said we will always remember it because it was on his 30^th birthday! At that time, Hunter was a little over 8 months post activation. It makes life so much easier for us all, especially in the car. Sometimes when he can’t find the right spot to put the magnet he gets annoyed, but we are trying to teach him just to say “off” when that happens. For those of you who haven’t seen him lately, we exchanged the tan colored coil/magnet for a brown one and they blend so well with his hair. A friend of ours asked where the magnet part of the CI went, but she didn’t realize it was there and she just couldn’t see it! The processor is still tan, but I think it looks normal since that is the part on his actual year.

Every night Hunter and I read books before bed, and one of them is a counting book. Well I can truthfully say that he counted to 10 all by himself last night, then pointed to his head and made the sign for “smart” while saying “mart mart!” Our sitter, Nini, always does that after Hunter sings the ABCs, and it’s a trip to watch him do it too! We work on the ABCs every night as well, and I think he pretty much has it down pat except he isn’t a fan of M or N. He goes straight to “OOOOOOOO P QQQQ” after L. He also likes to try and sign the ABCs while he is singing them. He has goes A down pat and he is proud of it! Then he proceeds just moving his fingers to make it look like he knows what he’s doing :)

I had off of work for Mardi Gras day and Hunter was home from daycare as well, so we had a couple of play dates and just maxed and relaxed the whole day. Blair and I had a Mardi Gras ball on Monday night, so he picked the perfect day to sleep until 7:45am! I was sure he was sick, but no, his Tia babysat him the night before and I think she just has that effect on kids to get them to sleep as long as possible J That afternoon Hunter and I also took a 3 and a half hour nap. And the minute he lifted his head, he said “rice”. That boy can eat. But I told Blair, I felt like he was really putting so many words together. I think he gained vocabulary during his nap!

And as for being all over the press last week…. Whoa! I will have to address that in a separate post later this week! It’s been wonderful for the entire Usher Community!

Happy Valentine's Day!

Mappings and AV Therapy- 8 Months Post CI Activation

This past Wednesday my friend Lauren and I started out early with Hunter for a mapping appointment in New Orleans followed by an AV therapy appointment in Baton Rouge that afternoon. I have to give a huge shout out to H and an even bigger thank you to Lauren because he did SO well the entire day. (for those of you who don't know or haven't gotten the pleasure of experiencing our long car rides lately, Hunter is just not a huge fan to say the least!) Our ride there was about 2 hours and 20 minutes, and I think it also helped that he had just woken up, we had Barney on the DVD player, his Barney stuffed animal, and iPad in tow! Whatever it takes.... right?

In the picture below is our angel of an audiologist, Ms. Tanya Andrepont from Ochsner's in New Orleans. She was very satisfied with the mapping levels that Hunter is on for now. She hooked his ears up to the computer and did a series of beeps to get him to drop the blocks in the box when he heard the beeps. Of course he just wanted to drop them all in and subsequently pour them all out, but he showed off his ABCs and his numbers, so she was smiles from ear to ear! (Thanks for all the footage, Lauren!)

Waiting to go into the sound booth.

Ms. Tanya did a longer series of beeps and sounds through a microphone on the other side of the window in the sound booth to see if Hunter could localize the sounds and turn in the direction from which the sounds were being permitted. We did this on our last visit and he didn't react up to par, but this time he turned for every single one! I was so excited that he was turning towards everything, but for some reason I had a feeling he would do well. I was telling Ms. Tanya how every time he hears something new or out of the ordinary he points to his ear, perks up and says "Her dat" (I heard that). And he does it even when the refrigerator starts to hum on or when the freezer drops ice. He can be reading a book or playing on the couch and he will always point those things out. Now get ready for it because I'm about to brag.... but Ms. Tanya said Hunter is the posterchild model for Cochlear Implants! I was floored. Music to a CI mother's ears! She is always so sweet to us and loves Hunter, but this was the most amazing news I have heard since he got his ears. She was so impressed by his progress. My little angel, all of his hard work has definitely started to pay off!

Here's a small video from the audiologist to give you an idea of what she was doing.

Now on to AV therapy. As you can see from the pictures below, we have a good ole time every visit. Hunter hasn't seen the student teacher in a while, so basically all he did was make sweet eyes and flirty faces to her the entire time!

Even showing off his abs!

We could not have asked for a better day. I was semi-dreading it, I'm not going to lie. But in the end I know we will always get through it. 

Ochsner's CI Recipient Christmas Celebration

Last week, we switched Hunter's AV appointment to Thursday morning so that we could head to New Orleans for a CI Recipient Celebration honoring children implanted by Dr. Molony at Ochsner's Hospital in New Orleans. It made for a longggg day, but my good friend Lauren offered to join us... and I'm pretty sure she has all of the Barney video words and dance moved memorized!

The day we went to see Dr. Molony for Hunter's 1 week post op appointment, he said next time I see this guy I want him to tell me hi. Well what do you know... the first person we saw when we walked up was Dr. Molony and Hunter proceeded with his adorable little "Hi!"

I didn't realize this, but Santa Clause had also planned to make an appearance at the party. There were about 60-70 people there, and the kids below were all implant recipients.

Patiently waiting for Santa....

There he is!

Going in for the kill....

And.... hands in the mouth, nervous, not really sure what to think!

It was very nice seeing SO many other families who are part of the Ochsner implant community. I have met various families over the past year, and two of them were there that I had been in contact with before.

I also met a few new families and overall, it was just a great experience. I know when Hunter gets older, he will appreciate this gathering so that he can meet other children his age with "ears" just like his! 

Activation Day!

So today was the day.... Hunter's hearing birthday! Today marks the first day that my baby boy's hearing journey began! Blair, Hunter and I started the day off at Another Broken Egg for breakfast. We were hoping that a full tummy would produce a nice, long nap on the way to New Orleans. Well we got a nice

nap, just not a long one! He slept for a grand total of 30 minutes on the way there :/ Oh well, there wasn't much we could do about it! For those of you who don't know, Hunter is a huge fan of food. I'm not sure how he doesn't weigh a ton by now, that boy must have a really high metabolism! Sooo, once we got to New Orleans, we went to lunch at the Piccadilly near the hospital. It's always been a family fave since we were little :)

Hunter was in good spirits at the beginning of the appointment. We started with the left here, and the first sounds he heard were little beeps generated by the computer. Here is a video of the first beeps he heard. Of course, it was a bit scary to him....

After a few beeps, and lots of trying to pull the CI off of his head, Hunter got to hear our voices for the first time. Here is that video....

There was a lot of reaching over and trying to take them off.... But here is the right ear activation. It kind of breaks my heart that he cries, but I probably would have done the exact same thing! Haha... Here's the right ear video....

Here is a our amazing audiologist, she is truly an angel :)

After information overload from our WONDERFUL audiologist on ALL of the equipment we had to take home, plus a training session on how to put the CI together, how to take it apart, all about the batteries, etc. we had one tired and fussy boy who still had not napped more than 30 minutes that morning. So we just knew the ride home would be quite peaceful involving a long nap. But he proved us wrong again :) He slept for about 20 minutes and was bright eyed the rest of the way home. It was VERY difficult keeping the implants on his head while he was in the carseat. I think I put the coil (magnetic part) back on 89 times because every time he moved his head, the magnet would come off. Then every time I touched his head, he tried pulling the whole thing off. There is a light on each outter portion of the CI, and when the magnet is on and he is getting sound, it blinks green. When the magnet is not connected, it blinks yellow. That's how we know that it's working.

Once we got home, everyone was ready to get out of the car! Blair wanted to just go walk around the neighborhood with him so that we could see if he left them on his head. Which he totally did! It was a great idea because there were numerous dogs barking. We found one of them and walked up to the dog, which Hunter was totally focused on, it was pretty much the cutest thing I have ever seen! I kept pointing to my ear saying "I hear that, I hear the dog" and I was pointing to the dog. It was the perfect setting to test his new ears! We came back inside to show Hunter some of his toys and let him expore the fact that they make noise. He really beat on his drum more than normal, and it was amazing :)

My BIG thing with Hunter since the day he was born, and even after finding out that he was deaf, has been reading him books. I am kinda crazy about it and always badger Blair to make sure they read a book before bed. So once we took a bath, I was bound and determined to get those CIs back on so that we could read our book together :) It didn't last very long because putting on the CIs after bath time was a little traumatic. We were warned that putting his CIs on after extended periods of time without them would proabably be a little disturbing. And we got tears... again, but I just kept telling him it would be okay. And this will probably happen again tomorrow morning, and it may happen every morning for a while. But we know that soon enough, he will be asking for his ears when he wakes up in the morning!

I am having trouble uploading videos to you tube, but here are a few pictures from the rest of the day:


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The wire going down his back is for the battery pack that is attached to his shirt. Once he gets a little older, the battery pack will go behind his ear. It's a little heavy for his head right now, but I have a feeling it won't be long until we start trying it on his head to eliminate the wires going down his back.

 

One of our two SUITCASES of accessories/necessities!

PS. I am too tired to proofread this post. Excuse any typos.

Goodnight-
Elise :)

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.