So much to say...

Okay, where do I begin? I try not to let too many things happe between posts, but every night before I know it I can no longer keep my eye open long enough and I don't have a clear enough head to write.

Let's start with yesterday. We had a 10am mapping appointment with Mrs. Tanya at Ochsner's to get Hunter's CIs turned up! We are hoping that this helps him respond to voices a letter better. We've got the response to noises, i.e., drum, clappping, knocking, toy clapper, anything in a formula canister while shaking... that's all a go! His name, Hunter... well we're still working on that! The appointment went well considering it was naptime and he was asleep before we got out of the parking garage. He didn't fuss one bit. I didn't think he minded the volume being turned up. This morning was a whole different story. Blair had to go into work early, and my first mistake was when I heard him tossing I got him to lay in bed with me. He did it the morning before and fell asleep on me within minutes. It's my most favorite thing in the world, but I should have known not to try it two days in a row. I usually get up and dressed when I hear him stirring and then when he's standing I will go get him for breakfast. This morning when I laid him on me in bed, he was still for a while until his eye caught the green light on the monitor. That was it! His head popped up so fast and pointer finger in the air! There was no turning back.....

After playing in bed for a while I got him up and dressed. As I was attempting to put his ears on, he was freaking out as though it was the first time he had ever heard sound before. As most of you know, he's become very clingy to me lately, so immediately he grabbed hold, started sobbing and wouldn't let go. I managed to get one ear on. Got up and went to feed him. (his favortie activity). He cried, and cried, and cried while he ate. He was one unhappy camper. And he only had one ear on! It was getting late and I thought about bringing him to the sitter and coming back home to get ready, but I attempted to get ready while he wept and moaned and tried in every manner to cling on to me. This was after I had taken the ear off completely. It was just a total melt down of a morning. I usually keep my cool and remain patient with him so as not to make things worse, but I couldn't take it this morning. He kept trying to climb on me and I just had to keep pushing (gently, I promise) him off. That made it even worse. I got half way done and put him in the car to the sitter. He was fine the whole way there and cried for a minute when I left. She said she eventually got both ears on and he was fine the rest of the day. What a relief, because my morning was pretty much already crushed! That's my once every 6 months I just need to breathe and be alone moment!

On a side note, at noon today, our Speech Therapist from Early Steps met with me, the sitter, our deaf ed teacher, and another ST from Early Steps. It was a succesful meeting and he will received ST three times a month. Twice at the sitter and once at home.... on top of AV Therapy once a week, a special teach once a month, and OT twice a month. He's a learning sponge at this age, so we are trying to get him as much therapy as we can without overwhelming him. Although I'm overwhelmed just typing all of that! Good thing his therapy sessions are more like play sessions!

Back to Wednesday. We had AV therapy after our NOLA appointment in Baton Rouge. Hunter did well with his new mappings. Nothing really startled him and we started to hear some Aaaaaah noises out of him when we did the airplane sounds. He also immitated the car sound, so we were thrilled. The appointment was kind of a blur and overshadowed by the 3 hour car ride home from Baton Rouge due to a spill on the highway. It took us an hour and a half to go about 10 miles. Lemme tell you, Hunter was a trooper. I on the other hand sat ever so calmly wanting to rip my hait out and just wanting to be home after such a long day on the road. I will do better next week with our therapy post. Promise.

One BIG BIG thing though, is that Hunter is starting to be on his feet a LOT more these days and we couldn't be more proud of him! We inhereted a walker that helped Cousin Eli walk and we have been practicing day in and day out! Here's a short video from Sunday. Excuse the diaper only bottom.....

We are going to the beach in July so we are hoping to perfect it alone by then!

Sorry this post is a little scattered, but here is a picture we got with Hunter and his CI Surgeon, Dr. Molony while we were at our mapping appointment yesterday! (notice him only wanting mommy!)

On Monday, we were honored to meet Archbishop Flynn and Hunter received a blessing from him. He was such a nice man and so very interested in Hunter's condition. We are so grateful so have this picture! Notice again, mommy had to be in it because he would not leave my side.

And here are a few more random picture updates....

I know I am leaving more things out, I just can't think at this moment. I hope everyone has a safe and happy Memorial Day Weekend! We can't wait to see Nanny Bev tomorrow :)

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

Happy Mother's Day

This video is a humbling reminder to never take anything for granted. Since Hunter was a baby, the first thing people always noticed were his beautiful blue eyes. Though we don't know what the future holds for those blue eyes, we do know that he was blessed to be given the gift of sight from birth, and we will fight to keep it as long as we possibly can. Tomorrow, I will hold my baby tight and thank God that he was put in our lives. I've said it before and I know it for sure... Hunter will move mountains. And Blair and I are priveleged to be a part of God's plan for him. Happy Mother's Day to everyone, it's the best job in the world!

 

 

Hunter's 1 Year Video

It's a little long, but the second song says it all :)

Hunter's 14 months...

And giggly! (see video below)

Usher Syndrome Type 1C

As most of you know who have been following the blog, we had genetic testing done on April 4th for the Acadian/French strand of Usher Syndrome. They told us it would take about a month to get the results, and although I had been itching to call them for the results, I knew they would contact me when they got them so I let it be.

Long story short, after multiple games of phone tag, I begged for the results over the phone, and they agreed to tell me. They had asked us to set up an appointment to meet with them at the Lafayette Health Clinic on Monday to tell us, but we didn't want to wait over the weekend.

He said that he hated to tell me this over the phone, but that the results were positive for Usher 1c. Here is a link for more information on Usher Syndrom, because it's very rare :( The vision loss portion of Usher Syndrome is called retinitis pigmentosa (RP). And here is a link to what that's all about.

I left work while he and I were still on the phone and proceeded to the sitter's house because I just wanted to be with Hunter. After calling Blair and my mom, I called a doctor in Boston who does the Vitamin A treatments. I wanted to know if there was anything we could do now. I said I had a plan, and this was the first step. After a long conversation with the medical assistant, and many many words that I didn't understand, she told me that the pediatric opthamologist/retinal specialist there would probably want to perform an ERG on Hunter. Here's a link to that! They aren't set up in their office to do it just yet, but they are hoping by the end of the summer they will be all set up. We can go there and get the ERG and get Hunter in the system. I know I have a LOT to learn, and a lot of things to research.  But this doctor was referred to me by an incredible mother to two girls with Usher Syndrome.

I think by the time I got home, I had finished all of my crying. I have a wonderfully happy baby boy. A healthy and growing and expressive baby boy. Not to mention I have a husband sent by angels. Hunter wasn't diagnosed with cancer, and we will all live through this. It will bring us closer and make us stronger. Part of me feels like maybe I'm in denial, but then again, I also think it's a sad situation that you would never wish upon your child or anyone elses for that matter, but we have to move forward. We will not let it define our lives, and hopefully one day we will give it a new definition. One with a cure. Because research has come a very long way where RP is concerned, and we've got a while before it will really start to affect Hunter. 

Happy Mother's Day to all of my mom friends out there reading this. Hug those babies of yours, and never take anything for granted!

AV Therapy- Week 2

I just wanted to give a little update on how therapy was going and how Hunter has been doing. Earlier this week my anxiety was through the roof. I watch all of these other kids on different blogs who are responding to sounds after 2 days, and responding to their name after 1-2 weeks.
And we simply weren't there. Our goal after last week's AV therapy session was to get Hunter to acknowledge sound 5 times in the next week. Well, Blair and I counted a grand total of 1. 1 true response to sound, and I just didn't understand why he wasn't responding more. Other moms, our sitter, and even the AV therapist told me not to compare him to other kids and when they started responding because every child is different. Well, I was good at not comparing (or at least not letting it get to me, because as moms we all naturally compare) when it came to sitting, crawling, walking, etc. But to me, this was different. This wasn't a learned skill or anything that has to do with Hunter's vestibular system. He got the implant, he was activated 2 weeks ago, we know there is sound going in there, so why wasn't he turning his head to the sound by now. But it is in face a learned skill for him.
I understand that sound is new to him. I kept telling people he's like a newborn baby... he knows the sound is there, he just doesn't know where it's coming from or the fact that what he's hearing is actually sound.

So we went back to therapy on Wednesday with high hopes of getting some answers, and here it is... so take a look at this video:

I am holding some bubbles and counting to 3, trying to distract him until the therapist hits the lollipop drum behind him. It's seems like such a small thing, but after the 4th time in a row, we just KNEW he was hearing that drum and we left that place on cloud nine :)

This week we are focusing on teaching Hunter his name, and using the words airplane and bus. We have also been singing the wheels on the bus and itsy bitsy spider before bed. For Hunter's sake, I wish I was a better singer :)

Here's another picture from therapy, making himself comfortable! We were so proud of him for even sitting there for over an hour, that's hard for an almost 14 month old!

Life is what you make it...

The sitter says Hunter is taking his ears off every time she turns her head. I can tell she is really stressed with it, therefore Blair and I are as well. Everyone keeps telling me before I know it he will love having them on his head and he will be asking for us to put them on. I'm ready to see the day. The stress of him stressing her out is very upsetting for me and was upsetting to me the entire afternoon.

I don't usually make it a point to read at night because I am always so tired that I would rather the extra sleep. But I started the book "Bloom" a few weeks ago, and I'm glad I decided to pick it up tonight. Here is a very inspiring quote from the author, Kelle Hampton, the mother of a special needs child who is truly an inspiration!

"It's taken me a while to grasp it all, but I have finally arrived at the grown up place of life-is-what-you-make-it and there are lots of things in life we go through that aren't comfortable or ideal, but they could be so incredibly worse, and a simple life of comfort does nothing to change us, mold us, make us into better, stronger, more beautiful versions of ourselves..."

Tonight, I am most thankful that Hunter was able to receive his "ears".... No one said it would be easy. And the hardest part will be over before we know it. I just wish I could be there to pick them up every time he takes them off, but I trust the sitter and I know she will help us get him where he needs to be!
This is a growing experience for us all.

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!