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 :)

Creative Therapy

Finally! Mommy is home and loving the fact that I get to spend so much time with Hunter and Blair! We have been strolling around Sugar Mill Pond near the house, and then just taking time to enjoy the beautiful weather. Yesterday he just sat in my lap content as could be (a cookie always helps) but I just sat there with a constant hug around him. I enjoyed it so much!

Afterwards, we scooped up Blair and went back there to eat at the Village Market since they have outside tables and the weather was just perfect. We couldn't have asked for a better Sunday afternoon!

Once we got home, we decided to try a new therapy trick we were told about last week. We took a clothes basket full of clean clothes and let him try to walk while pushing the basket. As many of you know, Hunter isn't walking yet... he's still very unsure of his balance while even standing. But we are working on it. He used the clothes basket as it was intended, just face down! Ha! But I had to video it because he sure was working hard :)

Oh, and I promised more pictures of the scars. We actually went and got a haircut on Wednesday because it was getting so long it was getting in his eyes. So I managed to get a few pictures as well. There are still some darn pieces of glue from the bandages that I can't manage to get out unless I would pin him down and cut them! I will keep scrubbing though... 

I hope everyone has a great week, Friday is activation day! Stay tuned for updates :)

Semi Wordless Wednesday

PS. T-10 days until activation day! :)

CI Surgery Photo Book

Click here to view this photo book larger

Photo books are the perfect gift for any occasion.

Anchors

The Friday before Hunter’s surgery, we were invited to attend a mass at St. Edward’s School in New Iberia, the same place I went to elementary school. If you recall from my post Keeping the Faith, the principal Mrs. Karen, and the entire St. Edward’s family have been praying for Hunter very much! Mrs. Cindy, who was my kindergarten teacher when I went to St. Edwards, is the one who told Mrs. Karen about Hunter, so she walked up for Hunter’s blessing at the mass as well. On a side note, when I told my friend Brandi that the kids at St. Edward’s prayed for Hunter every day she was amazed. She immediately picked up the phone and called her God child who is a student there to ask if she knew who Hunter was. She said “Yes, we pray so that he can hear”. I developed a huge knot in my throat when she told me that…. How amazing that all of these kids knew who Hunter was. When they invited us to attend one of their Friday morning masses, I knew it would be hard to do before his surgery with tax season and all, but it worked out that I was taking off for a wedding that I was in for my friend Kathryn on March 23^rd, so we were able to make it work so that we could attend the mass just 4 days before his surgery. Blair had a CPE class all day and needs LOTS of hours before the end of the year, so we knew he wouldn’t be able to make the mass. My mom was the only person I knew that was coming with me, and then I found out my dad would be there. So I also told Blair’s mom in case she wanted to join us, even though I wasn’t making it a big thing. I didn’t tell anyone else in the family because everyone else I thought would have been working…..

Well, we got there a little early, and after telling Mrs. Karen that it would only be a few of us she had blocked off two rows of pews. I had no idea why, but I just sat where I was told, with my mind kept on occupying Hunter and keeping him content (food.in.mouth) basically the entire time. Well after we took a seat, my cousins Mallory, Marianna and Lindsay walk in… oh man. I have no idea why but I just LOST it. I remember busting out in tears with my mom (well she had been in tears all morning just thinking about the mass) and I remember saying, “Ya’ll can’t do this to me!” Thinking ya’ll can’t surprise me like this… and why aren’t you all working?” Then walks in Blair’s mom, my mom’s parents, and my Aunt Nanette. All I could think was how lucky I am to have such amazing people in my life. Well the mass started, and as I look to my left, Blair’s Aunt Monique is there, and my Uncle Jose also came for the mass. For those of you who know me, I am quite an emotional person. All my life my cousins have been like sisters to me. And as we have gotten older we have only gotten closer. In high school we fought like sisters, and as we grew older, we served in each other’s weddings, like sisters. Marianna, my younger cousin, lives about 4 minutes from my house. She’s my “hey can I borrow a dress” or “Hunter and I need to pass the time can we come play?” cousin. We also email during the day because we both sit at computers all day. Basically some days she knows my every move! Mallory is a year older than me. We became very close in college, and I was the maid of honor in her wedding. She’s my go to side kick, always willing to join me for just about anything! In college, she even got my dramatic break-up phone calls. Those were the days. And Lindsay, well she’s a mom of 4 under 5 years old. That pretty much says it all! I call her for anything baby related. “Hunter just projectile vomited on me, what do I do now?” or my Sunday morning 7am phone call to come over and visit because there’s ALWAYS entertainment at her house. And Melissa, she’s my cousin who lives in Colorado. Number 2 of the 4 sisters. I think she thinks sometimes I try and take her place, but she is definitely irreplaceable. Thank you for allowing me to be a small part of your clan, but you don’t come to visit nearly enough! I recently read a quote on a friend’s blog that said “Cousins are those childhood playmates who grow up to be forever friends”. I love it!

These are just a handful of the people in my life that I like to call my anchors. They are my constant support, and they choose to be day in and day out. When they walked in the church that Friday morning, I knew they had chosen to be there for me. To take off of work and to be there for my family. In a rehearsal dinner speech I recently gave, I pointed out the fact that we tend to gravitate towards people who are much like we are in our values and goals. And I couldn’t surround myself with better people than the members of both of our families. I like to look at the things in my life that keep me grounded/sane as anchors in my life. I have a family that lonely people dream of. From the 30 first cousins on both sides of my family, to my husband’s amazingly supportive family, I think it’s safe to say, we have it all. My parents and family members, Blair’s entire family, and those who wanted to be there that Friday morning but logistically could not make it… they are all the anchors in our lives. And then there’s our faith, which is growing day by day. Some days the only thing I turn to for strength. My faith is also an anchor. Because the people in my life can promise me everything will be okay, but my faith will lead me on the road to everything being okay.

About the following video (excuse Lindsay’s hands that were shaking while taking the video).

The priest asked me if it would be okay to call us up towards the end of mass to give Hunter a special blessing in front of all the children. I was excited about the idea because the children were praying for Hunter every day in class, and I wanted them to know and see who they were praying for. When the priest told the kids to extend their hands in the air to give Hunter a blessing, you can’t tell but I lost it again. I had to keep my eyes shut very tightly to prevent my ‘ugly cry’ from surfacing.  After the blessing we went back to our seats, and as the kids proceeded out they kept pointing and saying “look, there’s Hunter!” … “I see Hunter!” I am so glad we were able to go, and we will be back to visit them soon!

Post Op Appointment and Lab Work

One tiny little guy woke up on the wrong side of the bed yesterday…. It sure was a lonnnnng day!

My mom seems to think it went fairly well considering he is in constant motion and was strapped in a car seat a majority of the day. But if he wasn’t sleeping or he didn’t have food.in.mouth he was whining!

The check up went well, he wanted to climb and crawl all over and up everything in the waiting room and in the doctor’s office. I sat there cringing because I used to get sick thinking of all the germs that are probably on the toys in a doctors waiting room. Never say never, because it kept it occupied and I was willing to do whatever it took to keep him tame. We did cover him with hand sanitizer afterwards though.

Dr. Molony took the tape off of the incisions. I tugged at the tape a little thinking there's no way he will take it off, it's still on there pretty well. He will probably let it fall off on its own. Nope. One side even ripped a bit of the scab off. Hunter fussed a little but it didn't last long. Not NEARLY as long as when he fell in the waiting room before his next appointment, but I will get to that later....

Dr. Molony was very nice, some say he's not very personable but we had absolutely no issues with him (his staff was a different story, but at least we are done with them forever!) he said the next time he sees Hunter he should be walking and telling him hi in the hall! We are so excited to get his ears turned on April 27th. We LOVE LOVE LOVE the audiologist and cannot wait to start working with her!

Next we made our way downtown to Tulane to draw the blood. After a bit of confusion regarding appointment times, we got there around 12:30. They had scheduled us for 11... But I told everyone who called to verify that we had an appt at ochsners at 11, and that we wouldn't be there until 12-12:30. But apparently that didn't change anything. So we had a little wait, and while Hunter was playing in yet another germ infested waiting room, he slipped and fell on his head. He cried, and cried, and cried and cried and cried.... Longer than when they actually drew the blood! A nurse who just came back from lunch took us back. She said she doesn't normally draw blood on babies, but he had one good vein she was able to get to. I had to hold him down, and I think that was the worst part. My mom was in the hall with her fingers jammed in her ears while he cried, and she blessed the vial of blood with Padre Pio oil and with a relic of St. Katharice Drexel. Saint Padre Pio oil is to help us implore God's loving tender mercy for the sick. We believe that if Hunter doesn't have Usher Syndrome, it will be a miracle. The results take about a month to come in. If it comes back negative, that means Hunter does not have the French/Acadian strand of Ushers. We will go from there and do more genetic testing if that is the case so that we can determine exactly what the cause of the hearing loss is. Either way, it's better knowing for his medical records in the years to come.

If it comes back positive ...well, I've got a plan. Although I'm not ready to elaborate on it, I'm ready to fight this thing with all of the energy I've got, plus some. I'm ready for whatever the results may bring us... I'm ready to step up to the plate and be the best advocate that I can for my son.  This will not beat us down. I'm so ready.

It's kind of hard to see, but you can see the incision right along his ear, and there's another one diagonal under his hair starting at the top of his ear going to the left. He was asleep when I took this.

Here is the other side, same thing with the incision along his ear and another one diagonal. This was before we actually got to wash his hair for real in a week, so there's still some crud on there. I will get better ones soon.

4/4

Tomorrow, my parents are bringing Hunter and myself back to New Orleans for his one week post op appointment. He can then go back to daycare on Thursday, then is off again Friday due to day care being closed for Good Friday. Who closes for Good Friday… Apparently everyone but the CPA firms when the tax deadline is less than two weeks away! So he will spend the day with his oh so very much missed God mother who will be in from Texas :)

Tomorrow, we will draw blood to be sent off for genetic testing. What a big life determining event for Hunter, and he has no idea. The results take about a month to come back. This is the beginning of our journey to finding out exactly what caused his hearing loss, which was diagnosed one year to the day, tomorrow, April 4th. Wow… I haven’t choked up since the doctor told me Hunter’s surgery went perfect. But this… the memory of that day, the thought of what the genetic testing will mean for him and for the future of our family. That gets me.

Tomorrow marks a year of growing for us. Lots and lots of growing. Growing pains, tears, laughter, togetherness with my little family of three, and lots and lots of love from everyone who surrounds us… and mostly by those we would have never met before Hunter’s diagnosis one year ago. What would we have done without the people in our lives who are there for us to offer advice, love and support, because they have once been there too. They have been in our shoes. They have shared in our pain, and they have shared in the little triumphs that only a parent of a child with a disability can really appreciate. When Hunter was first born, the doctors and therapists were telling us that he wasn’t holding his head up like he should. That there was a significant lag in trunk and neck control. Blair and I didn’t think anything of it really, we thought he was just too young to have such control. Then as the other 5 babies in our family were born last year, we would always comment on how strong each one of them was. One by one we thought they were just exceptionally strong in neck and head control. Little did we know, it was Hunter who was different… every baby apparently has good head/neck control by the time they are 6 weeks old.

Tomorrow marks a year of knowledge we have gained… it marks a year since the day that I first heard the word cochlear implant. And I feel so so guilty for never knowing of it before. What a miraculous thing. The cochlear implant is going to give Hunter a life we never thought he could have before seeing other children with CIs and talking with other parents of kids with CIs. I may not be the person I was a year ago to some people, but opening up my world to a whole new light has changed me. Some may think I'm not as readily available as I used to be (which comes with simply becoming a mother) and some people may judge the decisions we are making for Hunter's future. Our decision to stop the signing once he is activated is one that we made as a family. At times, we thought it might not be the right decision, and at other times we believed there was no other option. I guess what I'm trying to say here is everyone has their own uphill battles. They may not always show it on the outside, but this past year has made me stop myself from judging others on appearance or personal choices. Because they may have reasons that other people don't even know about. I have to take a step back and stop myself, because no one deserves to be judged. I'm not claiming to be perfect, I never will be. I am just striving to be a better person.
Once Hunter gets the outter part of the implant, I know people will stare. And hopefully I will be able to just smile back. I saw a girl in Target the other day with head gear for her braces. And I immediately smiled at her because it made me think of Hunter and because I know she probably isn't very fond of the head gear. But I am fond of cochlear implants, and I hope that I can smile when Hunter gets stared at in public. Because my baby boy, he was born deaf. And by the grace of God and the people he created, my baby boy will be able to hear. I already have a smile on my face.