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

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. 

AV Therapy Comes to Town

I got a text from Hunter's therapist, Shelley Chesney, last week... and she said she was looking into coming to the Lafayette area once a week for therapy, she just needs more clients.
You all have no idea how much easier this would be on us. The drive was taking a toll on everyone. One time Hunter cried from Lafayette to Lobdell because no one was available to sit back there with him. It sounds ridiculous, and frankly it is. But last week, Blair took him and his mom was sick so she couldn't ride with him. Well Hunter was so upset and wanted to get out so bad, that he got himself too worked up and threw up in the truck!

It's just not an ideal situation. Do we do it? Of course! And we will do it as long as Hunter needs. But it would be a WHOLE lot easier if she could come here.
So if you or anyone you know has CIs or has children who are HoH, Shelley is amazing. I could go on and on about how great she is, but if you watch the videos on my blog, the proof is in the pudding.

Please contact myself or Shelley Chesney with the Chesney Center in Baton Rouge. We would love to have you as part of our Chesney Center family. And better yet, Hunter would love not to have to ride back and forth to BR every Wednesday afternoon!

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 :)

6 Weeks Post Activation

With 4 therapy appointments this past week, and one VERY attached to his mommy almost 15 month old, it has been quite an eventful past couple of days!

Tuesday we had the Early Steps speech therapist over, Wednedsay we went to Shelley with Blair’s Aunt Monique and his cousin Kagon, who was a major help by the way, Wednesday night we had Harriet over for play time with our Special Teacher, and Thursday our OT came over to work on Hunter’s balance and walking.

As I mentioned above, this week has been allllll about Mommy and NOT wanting to let go. Speech therapy was fine, AV Therapy was decent, and then our Special Teacher appointment was a total disaster! So Mommy decided to stay away for OT to minimize the drama that is associated with Hunter wanting to be held by his mommy all day every day! I know everyone says it’s just a phase and to just love on him and enjoy it, but it started to drive me a little crazy when I could not get a single thing done without Hunter crawling up my skin!

Let’s just say he wasn’t in the mood to use his voice very much as therapy this week either, but we have a few new discoveries since turning up the settings on his ears.

Here is one video to show how he points to his ear now when he hears things. It’s adorable because since he got activated that’s what we always do when trying to make him listen, we point to our ear and say “I hear that!” And now he does it as well J

And our next consistent discovery is that Hunter knows that his name is Hunter. I couldn’t be more excited for him, and it’s ADORABLE when he turns to his name. Here is a short clip of that as well.

So for this week, needless to say I’m glad it’s over. I am determined to focus on what he is doing rather than what he’s not for the time being. Oh, and our OT said his balance has improved significantly since her last appointment with him. We are working on it, and it will come…. Baby Steps J

Fine

 

I'm fine. Really. I don't know how I'm fine, but I am, or I was... (for the most part). It's been a long week so far and it's only Wednesday. And tonight I had a moment. Which I expected to have every now and then.

The week started out with the three of us meeting with the geneticist on Monday at the Lafayette Health Clinic. Just being in there and seeing the variety of disabilities that we did made me feel appreciative that Hunter wasn't in a wheelchair... that Hunter is fully 'there' and able to communicate his feelings towards us. (communicate as much as can be expected from a 1 year old who has a hearing age just short of 3 weeks). After 2 hours from the time we arrived, the doctor finally walked in. At which time Hunter had already completely zonked out on us. They start out by reminding us that this is not our fault. Hunter doesn't have Usher Syndrome because of something we did or didn't do. Which we fully understand. Then they proceeded to tell us that the chances of us having another child with Usher Syndrome is 25%. The same chance Hunter had. And as they said, it's a totally different roll of the dice, and sometimes you can roll the same thing twice. Fabulous. Not the best news, but it's the facts. He then told us about the possibility of doing IVF and weaning out the embryo with the Usher gene. To me, that's playing God... and we're not big fans of that. What if we got rid of the embryo with Usher, implanted the other and our baby was born without a limb or with other birth defects. I would never ever ever in a million years be able to live with myself. What I'm trying to say is no matter what, it's not my choice to make. It's religion vs science and modern medicine, and as tempting as it sounds, I'm not sure it's something I could ever choose to do. For now, the thought of having more children will have to be put on hold. Blair needs time to let this all settle in, and I think we both need to do a little soul searching to decide whether or not we will have anymore children. As sad as it makes me to even think about not having more, Hunter hasn't been through any of the struggles that RP will cause him. It won't start to affect him for at least (hopefully) another 5 years. While emailing another mother, Blair was finally able to pin point how he feels about the situation... and it's that there's nothing worse than watching your child suffer. There's absolutely.nothing.worse. I have been having baby fever so badly lately. I want to be pregnant again, I want to have another newborn in the house, and most of all I want Hunter to have a sibling. He is one very lucky boy who had 5 cousins born last year, so either way he will never be alone. But it's a matter of deciding whether or not we are willing to take that risk.

Fast forward to today, Wednesday. My mom came with Hunter and me to Baton Rouge for therapy today. But the morning started with a visit to the pediatrician. Hunter has had a rash on him for the last few days that looked to me a lot like eczema. After bathing him with Dove sensitive and coating him in cetaphill, it was only spreading. Rewind three weeks, and Hunter left the sitter one day with hives and a fever. Since it was after 5, we just went straight to the ER. It was far from normal or anything I had ever seen, and it turned out to be what they thought was either an allergic reaction or something viral. He was on meds for a few days, but by the next morning the fever and the entire rash was gone. Which covered the back of his legs from top to bottom. Anyway, this current rash that has a really long name is something that usually comes after a viral infection, it doesn't itch, it can't be treated, and it takes anywhere from 3-8 weeks to go away. So good, no meds and it doesn't seem to bother him.

We took off for Baton Rouge after only a 20 minute nap in the ped's office, and he was bright eyed the entire way there, but did surprisingly well on such little sleep. He lasted a full 50 minutes until he was done. We got 5 different head turns to 5 completely different sounds and lots of noises from him, so we were very excited. Our goal in the next week is to get him to notice and respond to 5-8 totally different sounds. Oh, and bubbles are his A.B.S.O.L.U.T.E. favorite new thing! Thanks to Aunt Shelley (our AV therapist!) Every time he even glances at the bubbles he is pointing and wants them that second. Even at 6:30am. We should really take them out from underneath the carport....

So after a long day and a birthday dinner for my brother tonight, we didn't get home until 7:30 when Hunter is normally in bed for 7. He did surprisingly well, and we were lucky that he fell asleep on the way home from BR and stayed asleep until we got back into Lafayette. But when I took away his toy to put him in the tub, he completely lost it. He cried the entire time he was in there so I made it fairly quick. After brushing his teeth he pulled it together because he loves chewing on the toothbrush. Not long after sitting in the rocker, he layed his head on my shoulder and was out. My mom came by to get her car, and made a comment about how I never stop. I don't remember exactly what she said, but something to the extent of my life being non-stop and how the road that lies ahead of us seems so daunting. I will add that she mentioned she wishes she could take it all away, as we all do. But my life has always been non-stop. I wouldn't know what to do with myself if I didn't always have a zillion things going on. Between birthday parties, weddings, wedding and baby showers, bachelorette parties, fitting in girls' weekend getaways, and hosting half of the forementioned, it really never stops. I keep making the comment about how our wedding schedule is slowing deminishing and it's kind of weird not to have 18 in the next year! But maybe it's all for a reason, maybe it's because we've got new things ahead of us. I have never really felt 100% fulfilled with my career, only because I always wanted to do something where I made a difference in the world. I have always wanted to help other people. And I don't mean by being a CPA and helping people with their taxes. I want to make a real difference. And although I may never directly save lives, I plan on saving Hunter's quality of life, and hopefully many many more with Usher Syndrome.

This life, this diagnosis, this pain staking syndrome... it's not what I ever had in mind for my life or my children, but it's the card we've been delt. And I'm fine because I have to be fine. I have to be fine because I have to be a good and reputable employee at my full time job, I have to be the best wife I can be, I have to be the kind of friend I've always been in the past, and I have to be the best mommy Hunter could ever ask for. As Hunter was falling asleep on my chest, the tears just started pouring down my face. Blair and I are his rock, we are all he knows, we are his providers, we are his number one advocates, and most of all we are his biggest, and I mean biggest fans. If you could see us at home on a normal night after work, it's like we are two children fighting for Hunter's attention to play with us. I'm fine, but like I said, I have my moments. So I had to play the song Blessings, (the second song on Hunter's 1 year slide show) to just send me a little reminder that everything happens for a reason.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

Post Activation- Week 1

I apologize that it has taken me all week to send updates! Saturday morning we had big plans to go cheer on Blair while he ran in the Festival International 5K downtown, but when we went to put the processors on H's head, it was almost as though we were putting them on again for the very first time. We were aware that this may happen, but he was very upset, so he and I stayed home instead of trying to take on a crowd. He just sat in my lap with his head buried in my chest. Every once in a while he would look up at me and start crying and then bury his head in my chest again. I just kept rubbing his back and telling him that he was going a great job and that everything was just fine. Poor baby was obviously scared, but after about 20 minutes of laying on mommy, he was ready to take on the day! Here is a picture from Saturday. He was very much more into his musical toys.

Our weekend went well, it was not bad because Blair and I were always on top of his processors in case they happen to fall off while rolling or playing on his back. Now the sitter's house on Monday was a different story. She said they were constantly falling off and that she was going to call the other mom of the girl who used to go there who also had a CI and get something that might help. It's called a huggie aid and this is a picture of one Blair took when they let us borrow her old ones.

Rather than using the snug fit provided by Cochlear, which wasn't keeping them on as well, we decided to try and use this one, and I think we have found a winner and will be ordering more of them in the near future. It wraps right around his ear and keeps it on a lot better.

Another issue we were having was the magnet was constantly coming off. There are different strengths that the magnets come in, and they range from a 1/2 to 6. Our audiologist at Ochsner's sent us home with a 1 because she seemed to think it was a good fit. He wasn't very active while we were there for the inital fitting, or else I think she would have realized that the 1 was not going to be strong enough. Even with the different strengths, you can loosen and tighten the magnets. She did inform us that if the magnet is too strong, it can produce a red ring on his head and if it gets really bad, it can start to pull on the inner magnet and the skin would get infected. This has caused some CI recipients to have to be reimplanted. Well this scared us enough to not even want to tighten the size 1 magnet, but it simply would not stay on, even when he would shake his head. Blair did lots of research this week to see where we can get more huggie aids how to really tell if the magnet was too tight on his head. An audiologist at Cochlear told him that we would see scabbing if it got infected but I don't think we would let it get that far! 

When we went to see our AV (Auditory Verbal) therapist on Wednesday, she said it definitely should not be coming off just due to the wire hitting the back of his shirt, or things of that nature. So we have tightened the size 1, and we now got a size 2 to try. Last night when we were putting Hunter to bed, I have to say that I did notice a very small red ring (about the size of the magnet) on one side of his head. Blair wants to try the size 2 strength, not tighten it to be closer to his head, and see if we see anything. Don't be alarmed though, it was not like blaring red or anything.

But back to our first post activation AV appointment on Wednesday, we absolutely LOVED it! Besides the drive there which was accompanied by a storm, all went well. I think Hunter REALLY liked Shelley, and I think he did very well for his first appointment. She is going to be driving this bus of a journey we have ahead of us, and we will see her every Wednesday afternoon in BR. She told us our approach from now on should be "Tell then show" instead of "Show then tell". In other words, she had a drum that she would bang underneath the table. She would see if Hunter was acknowledging that he heard anything, and then she would show him that the noise he was hearing was coming from the drum that she was banging underneath the table.

(On a side note, if you notice from the picture above, we have also started dressing him with a sleeveless white onesie underneath his clothes, which we have the battery packs clipped to. We just slip them under his shirt and that way the wires aren't exposed and visible to yank at. We are hoping to possibly get some pockets sewn in, as we saw from Landon's mom, but for now this seems to be working!)

She did the same thing with a few farm animals. She would hold a small rubber ducky in her hands without showing him what it was, and she would say "quack quack" and then we would all say it so Hunter could see the noise was coming from all of us, and then she would show him that it was the rubber ducky. Nini, the sitter, had already been working on the duck and the sheep ("baaaah") so those were the two we started with. We also added cow to the mix.

She said our goal over the next week is to notice that Hunter acknowledges sound 5 times before we go back. She also informed us that he needs to start showing us that he knows his name, so we have been working on that as well. By the end he was on all fours on the table and throwing the cars in between his legs!

Last night we had occupational therapy and we are still working on Hunter just being comfortable with standing up. He is still very wobbly while he is on his feet. During our Early Steps meeting last week, one of our goal we listed out was to get Hunter to play more independently, rather than having to be able to see one of us while doing anything. One suggestion was to set up a pack and play, put him and some toys in there and let him go to town playing by himself. I set one up in the kitchen one night while I was cooking and it worked out well. He knew I was still next to him, but I didn't have to entertain him. He mostly like to be standing while in the pack and play anyway, so this gives him extra time on his feet, which he needs to get more comfortable with. Next weekend marks his 14 month birthday, and we would like to start seeing major progress with his standing. Our OT thinks he's just gonna get up and walk one day just like he all of a sudden started crawling, but everything we do with him needs to involve standing while playing so he can get more accustomed to it and actually want to be on his feet.

I see now why I haven't had time to post all week... that was a lot of information in just the past 5 days to dish out!

Have a great weekend everyone, mommy will be on a bachelorette party with the girls, so it's just H and Daddy all weekend! Here's to the most amazing and involved daddy I know :) I love you both to the moon and back!