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.

 

Hello 2014!

I apologize for not posting in a while... I've recently been called out so I promise I will be posting more in the future, ha!

I just caught up on a fellow CI mom's blog that I follow and finally got the update I have been looking for since before Harrison was born. This girl was pregnant for her 2nd child and (like me) had not had much time to post after the baby was born. Finally, the update I was looking for. It wasn't the outcome I was hoping to read, but it made me even more grateful to know that our sweet baby Harrison can hear. Her second child did in fact fail the newborn hearing test and the ABR test two weeks later. Wow. What a rush of memories that came over me from when Hunter was born. I can't imagine going through that again. It's a long hard road with a deaf child, but Usher Syndrome on top of that, the dark unknown future that lies ahead for Hunter, that's what would have killed us to have to face with Harrison. Knowing that another child's vision could be compromised would have been devastating. But we went into it knowing there was a 25% chance, so we would have welcomed him with loving arms, just as we did with Hunter. And the second round of CIs would have been a breeze compared to the first with Hunter. But again, we are forever grateful.

To say things have been busy lately is an understatement. Harrison had 2 cousins born within 3 weeks of him, so we have been visiting a lot, and everyone is getting baptized right now, including Harrison next weekend. Going back to work was not a huge adjustment for me. I work better on schedules and wasn't great at getting myself up and presentable when I was on maternity leave.
Here is a picture of Hunter and Harrison on their first day together at the sitter. Hunter was so proud to have Harrison at "work" with him! (He always says he's going to work at Nini's since Mama and Daddy have to go to work!)

 

Everyone wants to know how Hunter is adjusting to not being an only child anymore, and knock on wood, we couldn't ask for a better big brother! The first month or so he didn't pay Harrison much attention, and we were perfectly ok with that! We didn't force Harrison on him, and he warmed up in no time. He wanted to help feed and now every night when I ask Hunter if he's ready to bathe, his reply is always "I take a bath with Harrison?" So he has done really well. We still have our normal overly dramatic moments with him, but for the most part they are few and far between.

 

(Hunter loves playing with the phone at my mom's house and didn't want to leave Harrison out!)

 

Here are a few other recent pictures of the boys.

 

 

Hunter turns 3 in exactly 2 weeks. I can't even wrap my head around that! It is so true that some days  seem to go by so slow yet the years seem to go by so fast!

 

Harrison will be baptized next weekend at St. Joseph's Catholic Church in Milton near our house. We have an heirloom outfit that my cousins and I wore for our baptisms, and now all of our children are wearing it too. Harrison is next and I'm so grateful for this tradition :)

 



The following is a video of Hunter showing Harrison how to sign the ABCs. And this video is the ultimate preview of a beautiful sibling relationship in the works. This is why we had another baby, this is what it's all about for us as parents.

 

I will continue to try and post to the blog more updates about Hunter's progress, but we haven't had any real news to share lately except that he is still soaring with his language and vocabulary skills. We are in the middle of trying to sell our house and closing on the construction loan of our future home in New Iberia, so we are keeping ourselves pretty busy these days!

Hunter did go for his evaluation to transition from Early Steps (which ends at Age 3) into the school system. He went to big boy school and played in a classroom for 2 days, an hour each day, while 3 different ladies evaluated him. He was ALL over the place because there were SO many toys all around him, but did pretty well for the most part. We have a meeting tomorrow to get the results from the speech therapist, so I will relay that information as well.

 

And my daddy, Hunter and Harrison's Pappy, turns 60 this weekend. My daddy is the perfect combination of patience and motivation. He has worked tirelessly for everything he has and always made time to support everything my brother and I pursued.

Happy Birthday Pappy!

 

 

Hunter 2.5 Years Old

Today, September 12th, my baby boy turns 2 1/2 years old. It's crazy to say he's 2 1/2 when people ask how old he is... bitter sweet I guess. We got some good news recently from our AV Therapist that Hunter does not need to go to therapy in Breaux Bridge every week anymore. We will cut back to every other week and make sure Hunter is staying on track for a few months before possibly taking him out altogether. He really has been doing so well, but I am scared that when he turns 3 and isn't eligible for Early Steps speech therapy anymore that he may start to get behind. Therapy twice a week has been a part of our routine since for almost a year and a half now, so another bitter sweet thing to be able to graduate from weekly services, but a little anxiety as to how Hunter will keep up with others his age.

Here are a few fun facts about our big boy that some may not know:

Hunter's favorite food lately has been Donuts! We pass there on the way home every day and I have to remind him that Donuts are only for breakfast, and only once a week!
Same goes for Icees, he asks almost every time we pass a gas station, but we only get Icees on Fridays!

Hunter is a little OCD (if that's the right way to put it). He HAS to be the one to press the garage door button every time we leave the house and every time we get home. (And requests the same at every house we go to) If we accidentally forget we have to close it again and then let him press it to re-open it. In the mornings, he presses it near the door and we run to let him "push" it open and tell him how STRONG he is!

At night, when we tuck him in to bed (sans ears) he has to have his barney pillow pet, his mini pillow under his head, his santa in one arm, his bear in the other, and all of the other random stuffed animals on top of the two blankets he is tucked in with. Then he is still yelling for his bear, which we consistently point out is in his hands and he nods, but still yells every time we walk away. It only lasts 5 seconds, don't worry. Then in the mornings, if he is already awake when we go in there, he has to hand us every single stuffed animal and blanket and pillow and then expects us to have two hands left to get him out. I have started dropped most items to the floor when he's not looking. Weird cookie. ;)

Hunter LOVES swimming. He is quite the dare devil who isn't afraid to jump in when we aren't looking or flip into the baby pool all by himself. I don't know what we will do on the weekends when it gets too cold to swim!

He seems to understand (I think) that he will have a baby brother named Harrison. At night we bless Hunter, Mama, Daddy and Baby Harrison and occasionally he asks him to wake up and come out to play. He also points to my belly and says- Mama has baby! It will definitely be interesting to see how he reacts in December when Baby Harrison really does make his arrival!

Hunter is also just like any other 2 1/2 year old boy who can get pretty defiant when he doesn't get his way (or when he just decides to be). It's been a challenge, but this too will pass! As much I want him to grow up and move past this phase, this age can be really fun (again, when he wants to be!)

Have a great rest of the week and weekend, thank you for following!

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.

Happy Mother's Day!

To all of my mom friends, and even my non-mom friends. Thank you for everything you have done for me since I have become a mom to Hunter. It definitely takes an army to keep our lives going and to keep it all together. So thank you to every single person in our support system, big and small. You all make numerous impressions on Blair, Hunter and myself and none of us would be where we are today without you. The people I surround myself with are who make me the mom I am today. I got numerous sweet thoughts yesterday about being a great mom to Hunter. But the truth is we start to take on the habits and attitudes of the people we surround ourselves with, and all of you have contributed to my strength as a mom. Thank you all! 

The following video was probably the 3rd time that day that Hunter sang Happy Mother's Day to me and it was the best part of my day! I got to sleep in while Blair took Hunter to an early mass (which is a task in itself) and I even got to shower and put on my makeup ALL.BY.MYSELF. That doesn't happen very often anymore. Well Blair and Hunter walked into my room with a plant and a card READY to sing, and I have to say it TOTALLY made my mother's day. For those of you who don't know, Hunter is obsessed with singing happy birthday to anyone at anytime. So singing Happy Mother's Day was just as satisfying to him to be able to sing it to me, his Nana, his Gammy and his Nanny yesterday. I caught this one on video after breakfast while playing at the gazebo in downtown New Iberia. 

And here is a picture of me and Hunter :)

And here were Blair and Hunter when they came in to wish me a Happy Mother's Day! Saying cheese of course..... ;)

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 Live!

I have a few videos that I wanted to share from the last few weeks. This first one is particularly funny because I was in the car one day on the phone and I just heard Hunter saying this while he was pointing to the window, over and over. So I had to get him to say it for Blair. Obviously he hears this over and over at daycare :/

These next two are a testimony to the fact that Hunter LOVES to count! 

He has a particular fondness for the number 18! And no, we haven't hired him as a part time helper, but he can start to get an idea of what his chores will be like :)

PS. Hunter's 1 year hearing birthday is right around the corner, April 27! What a wonderful year it has been :)

Happy 2nd Birthday Hunter Paul!

I just wanted to post a picture from Hunter's birthday party this past Saturday. Of course it was a Barney birthday party, since Hunter is his biggest fan! Will post more soon!

And here are a few vidoes from the first time Hunter was able to hear Happy Birthday to him!

And here is a picture from this morning, on his actual 2nd birthday!

\

Happy Birthday to you my sweet angel!

Love, Mama and Daddy

I Love Mama/Daddy Video

Excuse the terrible video footage, bad lighting and 2 year old who gets distracted even by every little thing! The remote, the couch, the phone, etc.
But this is my favorite part of the night. We were reading books and he just started saying I love Mama/I love Daddy. Yes, he takes some prompting sometimes, and yes he takes some direction to get back on track. But there are times when he starts and doesn't stop, and it's music to my ears. So I just thought I would share! Enjoy :)

Link to KATC Newscast

For those of you who missed the KATC newscast last night, or for those who don't live in this area, I have posted a link below. We cannot say enough how great it was working with Akeam Ashford at Channel 3. He was so polite and truly interested in Hunter.

http://www.katc.com/news/boy-lives-with-usher-syndrome-type-1c/

I got a text from Akeam Friday evening say that the ABC national news is picking up the story. Hopefully this will help to educate more and more people on exactly what Usher Syndrome is and what they can do to help!

Thank you again to everyone who helped out with this, journalists and news casters are what it takes to get the word out. Hopefully we get a call from Ellen real soon :)

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. 

A whole new meaning to Christmas...

This Christmas will go down in the books as one of my most memorable. Not only was it filled with an abundant amount of love from great friends and family, but for one special little guy, it was filled with the joy of sound. 

I could sit back for hours and watch Hunter "dance" around the house, run around in his diaper, "play" with his many many cousins, and rip open presents like there was no tomorrow. I wasn't prepared to enjoy Hunter's reactions as much as I did, simply because I didn't think he would care much for the presents and the toys inside of all the boxes. And every so often when he would hear something new or out of the ordinary he would sharply point to his ear and say "herdat". And we would abruptly respond with yes, I heard that! That was the singing bear, the piano/guitar, etc... it was truly a special time for us all. 

With all of the new vocabulary that comes with the holidays, Hunter's speech and language has really started to soar over the last month. And I have to say, it's one of the most beautiful and rewarding experiences I could ever be a part of. Being Hunter's mother is not only a job and a role, it's a gift. One that keeps on giving back, good days and bad, time after time. 

Enjoy some memories from Christmas 2012- One that will go down in the books forever. 

Holidays

I don't even know where to begin this post... it's been so long since I have had time (or energy) to sit down and blog.

Hunter has been walking/running around NON-STOP. I even asked Blair tonight if maybe he was hyper-active becasue he just doesn't stop when we get home! It's so fun though. I honestly can say, now that he is walking, this age is a ton of fun! He is repeating everything we ask him to, and we are starting to work on putting two words together.

Here is a video from AV therapy two weeks ago:

 

And here is a video from AV therapy this week:

 

 

And here are a few pictures from the Safari of Lights at the Zoo of Acadiana

 

 

He hasn't really touched the tree or the presents.... YET

 

And here is our latest video of him walking/running. Excuse the diaper only fashion statement, I think he feels free with no clothes on :)

 

 

I am hoping after this week that I can get back on track with more details in my blog posts. Meanwhile, it's pictures and videos galore!

 

Happy Holidays Everyone!

 

20 Months & Walking

Yesterday, Hunter turned 20 months. Where does the time go? And when can I stop counting his age in months?!? At 2 I assume!

Today, Hunter started walking/running on his own, and he did.not.stop.

Here's the proof that it wasn't just a one time thing!

And super duper excited and proud parents :)

and obviously he's pretty proud of himself too, ha!

Thank you to everyone who has "walked" Hunter with us, all of the hard work has definitely paid off!

Friday Phone Dump

Speech Therapy with Ms. Amy!

Life has been so busy lately, I can't believe it's almost the middle of November. So for now, it's a picture/video post! 

Tomorrow, I am having lunch with Jennifer Lentz, a researcher from LSU in New Orleans who is researching a cure for Usher 1C, and I am thrilled to hear what she has to say! 

Have a wonderful weekend everyone ;)

Mapping and AVT

Yesterday, Blair, Hunter and myself made our way to New Orleans to see our wonderful audiologist to update Hunter's mappings (settings) on his CIs. Hunter is basically turned up all the way when he comes to volume. She does not believe that he will need to be turned up any more at this point unless we think he is not hearing like he should. We have one more setting that is a little louder, but we were advised not to switch unless we really think it's necessary. Then we have another setting that can lower the volume a tad bit in case we are in loud environments where we think the volume may be bothered by the loudness. Hunter was very cooperative at this appointment, considering we were approaching nap time. While we were there we also did a sound booth test where Hunter was sitting on my lap while the audiologist would project sound through different speakers in the room to see if he could tell where the noises were coming from. He turned for a majority of the sounds, while there were a couple that he was unsure about. But overall, she said he was doing wonderfully. She said that the rule of thumb is for a 20 month old to have a 20 word vocabulary and that we were all doing exceptionally well!

After this appointment, we made our way to Baton Rouge for AV Therapy. We had one tired little puppy who only slept for 20 minutes in the car, but he lasted a good 50 minutes before he was ready to head out of there!

Here is a short video from therapy yesterday (until he noticed the camera!):

And here is a video from the house to show Hunter's receptive language skills at 5.5 months post hearing:

Have a great weekend everyone. Our new twins are spending the weekend with us for their baptism, and Hunter will get some long overdue time with his Nanny :)

Friday Phone Dump

Yes, I am stealing the term "Friday Phone Dump" from one of my favorite blogs. Here are a few pictures from the past few weeks and a couple of videos from therapy this week. Excuse the skewed footage, I had to hide my phone behind a box so Hunter wouldn't notice it. (Also just a note, you can click on any of the smaller pictures I have posted in my other blogs and they will zoom larger.)

 

5 Months Post Activation

Thursday, September 27th, marked 5 months of activation for Hunter. He has been doing leaps and bounds when it comes to both his receptive and expressive language. Receptive language is the comprehension of language- listening and understanding what is communicated to him. For example, when I tell Hunter to go throw away the plate, he understands and walks to the trash can. And before I can even finish telling Hunter to take his ears off for bath, he is ripping them off of his head. Good thing that's one of the few times he will take them off! He understands when we ask him if he wants to eat because he will sign eat, same for bath, and a number of other things.

Hunter's expressive language, which refers to being able to produce speech and communicate his wants and needs is also progressing rapidly. This weekend he FINALLY started to say "Da" for Daddy instead of just signing Daddy every time I ask him to say it! He repeats almost anything we tell him to say. That doesn't necessarily mean that it sounds exactly as it should, but he's doing it and that's all we are worried about for now!

Here is an updated list words that Hunter says without being prompted:
1. Mama
2. More
3. Da (daddy)
4. Bite
5. Eat
6. Baree- Barney
7. Naynay (banana)
8. Nana
9. Nini
10. Bye bye
11. Hey
12. Hi
13. Ball
14. One
15. Kiki (kick)
16. Teeth
17. Cheese
18. Whooaaa!
19. Uh Oh
20. T! (TV)

He also repeats the following words on a steadily:
Ready
Water
Please

We are still working on walking and balance... For example, today at mass while we were walking the front of the church he learned to walk backwards :) (with my hand of course). And we got a teepee from a friend, so we played in there most of the afternoon. I was on the inside, and Hunter would walk back and forth from Blair to myself, grab onto the material that opens and closes in the front and he was balancing himself enough to turn around and go back. My mom even caught him standing alone for a second, and I did too another time! Baby baby baby steps!

And last but not least, let me give H a shout out because we went for his 18 month checkup last week, and his pediatrician left the room and said she was smiling ear to ear and it warms her heart to see how well he is doing with his ears! For our milestone checklist, I was one proud mama to be able to check yes next to does he say 10 words.

I will end this post with a video of Hunter.... To say the guy LOVES Barney is a massive understatement! Every time he sees a remote he points to the TV and says T! Baree! This is what he does EVERY time Barney comes on. Then he watches himself over and over and just laughs and yells "Whoa!". At the end you can hear him say "Baree" for Barney. We eat, sleep and breathe Barney.

Walking... Baby Steps!

Blair, Hunter and I decided to make our way to my parents' house in New Iberia to weather Isaac. While we were there, we decided to do a little practice walking.

The following video is the very first time Hunter has taken this many steps on his own. I wasn't this far away to start off with, but I kept backing up and backing up because he was doing so well. The following night he was even pivoting and walking on his own. Granted, Blair or myself have to always set him up first and get him on his feet. But we are thrilled that he can do it this far on his own. Is he walking on his own all the time? Not yet. In fact, the following day he wouldn't do it at all until later that night. But it isn't far away, I just know it!

Enjoy this video, because we have watched it over and over, and over and over! My favorite part is the big hug at the end :)