Monday, April 27, 2009

Enjoying Each Small Step

I'm not a very patient person when it comes to some things. I hate admitting it, but when I want something, I want it or want it to happen NOW.

This journey is not one with instantaneous, you water it and it grows type of results; it's one that takes a lot of nurturing, a lot of repetition, and therefore, a lot of patience waiting to see results. People believe, as we did in the beginning, that the implants are on, surgery is done, and BAM, the child can hear, amen, everything's great. Not true. There is a lot of work involved with teaching a deaf child to hear. Very small steps, with milestones popping up here and there; sometimes you see something new everyday, sometimes not. I constantly remind myself of what some of the CI mom gurus have said on CiCircle, "This journey is not a sprint, it's a marathon." And that it is.

Aiden is six weeks post activation of his right ear, and just today, I turned him up to his last program, P3 (program 3), on his left ear. I have to say, that I wanted to see results day 1 with the first activation, and we did, but by day 7 post activation, they were still the same results, and I wanted more.

Baby steps and lots of repetition. It's what it takes.

Practice the lings.
Point out every little sound.
"I heard that!"
Talk a lot more.
Sing a lot more.

Let him take it all in.
Then wait. and wait. and wait.


I've prayed many years for patience. I finally quit praying for it, because God kept giving me situations to test my patience. I guess this is the biggest one. I think I'm getting it.

I'm learning a lot of ways to work with Aiden and teach him to listen; I'm learning what signs to look for that he's hearing something, and constantly looking for those "aha moments" from him. But what I'm learning more than anything, in these short six weeks, is to sit back and cherish every little baby step that Aiden is making; cherish the moment that we're in - cherish the NOW. Because before I know it, I'm going to wish he was this small again. Before I know it, I'll be complaining about how all Aiden says is, "No!"; before I know it, I'll be writing about how my deaf child will not QUIT talking; before I know it, I won't have to continuously say, "I heard that!" and point to my ear, because he'll just get it. And I'll miss it all.

Take it all in.
One baby step at a time.
It's a lovely journey.

And here's where we're at in Our Journey, six weeks post activation.


(Make sure to turn off the music on the right before playing video).
Please note that I have tried and tried to caption this through overstream ... and it's just keeps shutting down my computer (Vista issue maybe?). Any suggestions, you can contact me offline!

Note: The airplane is used to represent the /ah/ sound (which is one of the Ling Six sounds used to test Aiden's CIs everyday). You can see how airplane is signed here. Aiden just uses his pointer finger to sign it. By him signing it, shows us he is hearing the /ah/ sound and associating it to the airplane!

Tuesday, April 21, 2009

Six Weeks Post Activation on Right Ear - Update on Left Ear

I've been horrible at keeping up this blog and so much has been happening! I SO want to make a video, but I am SO busy what seems like ALL the time! I'm toting my older two kids to and from school everyday, which turns out to be over an hour trip two times a day, then there's AV therapy or Infants & Toddlers (Aiden's TOD and PT) or audiology or lately, back to see the surgeon. Then Aiden is such a busy, busy one year old that does not like to play by himself. I think with all the "play therapy" I've done taught him he only likes to play if mom or dad is sitting on the floor playing with him. UGH! Gotta break this habit and fast! So anyway ... here's a quick recap of what's been going on:

Aiden's left implant looks GREAT! After surgery, he had a bout with fluid build up and had to rewrap this ear. We finally got the left CI back on this past Monday (10 days after surgery) and our baby's bilateral again! Whew! He did great with reactivation and has barely tried to pull it off since! We're back to P1 (program 1) with this ear, but have two additional programs to move up to over the next two weeks. Then after these two weeks we'll go back to the sound booth to check both ears, and readjust, if needed, from there.

Aiden was also tested in the sound booth Monday. My baby is hearing at 15-20 db across all frequencies with his right CI!!! To me, this is unfreakinbelievable! 15 to 20 db!!! This is the same boy who just a year ago couldn't hear anything at all at 110db and now he's hearing at 15-20db! Are there truly any words to describe this?!?

Some very fun, amazing, just out of this world, I thought I'd never experience with him things he's doing include:
  • Whenever I do the /ah/ sound - he signs airplane (well, with his pointer finger flying around) - without anything from me except the sound /ah/! No joke.

  • He is turning more and more to his name! I called his name all day today and almost each time I said it, he turned, looked at me, and smiled!

  • When he's in his booster seat in the kitchen and someone comes in the very squeaky front door (which he cannot see), he turns to look who's coming in!

  • When he went to dump the cat water bowl today, as always I said, "Aiden, no-no", which he typically never hears and continues to dump the water all over, but today he stopped! STOPPED, looked at me, went to do it again, I repeated myself, signed no, said it again, and he crawled away! I tried it again later as he tried to rip apart an arrangement ... and he STOPPED again, looked at me and smiled, very slowly put his hand up towards it again, I repeated myself (without sign this time), and he crawled away! I almost wanted to put him in situations so I could say "no" to him just to watch him respond! I've never been so happy telling a child no before!

  • He's starting to babble ... a little bit. This is my biggest concern, but like his audiologist said - he's only six weeks hearing with one CI. True. And we are finally getting some "ah's, da's, and ma's" and today I even heard a couple times of him just gibber-gabbing like a hearing baby does, but still not like he did with his aids. We'll get there though.

  • Sometimes, when we say "bird" or "tweet-tweet" he will look out the window at the bird feeder and then sign bird (which he does backwards and with his full hand). And sometimes when I say "cat" he will look around for one of the cats.
I need to get some of these things on video, but again, it's been so nonstop with all three kids. I can't be more pleased with how far my little man has come this past six weeks. I hate all that he's endured, but we know the end result is worth it. He's a tough little thing with an amazing disposition. He looked at me tonight, with those big blue eyes, and as I looked back at him, he just smiled at me. Smiled a big ol' smile. And he melted his mommy's heart just one more time today.

Saturday, April 11, 2009

Repositioning Surgery

Aiden's repositioning surgery went great yesterday. We were up at Hopkins by 5:30am and home by 12 pm. We played in the waiting room for about an hour before they finally called us back to preop.

Dr. Niparko came back, discussed how he planned to reposition the implant, and before I knew it, it was time to walk Aiden back to the OR. This was the hardest part. I knew this surgery was not near as invasive as the first, but there's something about having to hand your baby over. I knew I was handing him over into great hands though. I have nothing but admiration for Dr. Niparko and the miracles he provides. We feel very blessed to have him for Aiden's surgeon and feel so secure with him. Everytime I see him, I still can't believe that we're here and that he is Aiden's surgeon.

After two hours, he came out and said everything went great. It took a bit longer than expected, but said he worked extra slow as to hopefully get that lifelong fit and not just a five year fix. He didn't have to mess with the electrodes at all, which was one risk of the surgery, having to insert a whole new implant in case a cord was accidentally nicked.

When I went back to post op, Aiden was drinking a bottle, smiled at me, and within fifteen minutes was blowing his raspberries and flirting with the nurses. Definitely a lot better this time coming out of anesthetic than last. By 5pm last night he had torn the bandage off and was back to Aiden - all over into everything.

Now that the bandage is off we can see how Dr. Niparko did a wonderful job repositioning the implant. It barely protrudes and is set higher, more up and away from the ear. He told me we could put the coil back on by early next week and start him over on program one. Aiden's wearing the whole processor on his shoulder right now anyway, so it won't bother the incision at all. Once he heals a bit more, I'll post before and after pictures showing the difference.

Wednesday, April 8, 2009

Bad Day, but Counting My Blessings

So we started off our morning with lots of smiles, a good breakfast, and what I thought was going to be a pretty damn good day. Wrong. And not that it was a rough, woe-is-me Aiden was a hellion day, but more so a hard physical day for my baby ... and a teary one for mom.

After breakfast this morning, I took Aiden's tray off his chair to wash it and before I knew it, he was on the floor ... face first. WHACK. I picked him up and a big ol' goose egg started to take form on his head. I ALWAYS buckle him in ... ALWAYS! I guess not this time ... I can't imagine that he could've unbuckled himself, although he does a lot of things I'd never imagine. All I could do was hold him and cry with him. I felt SO, SO, SO BAD. How could I let this happen! Then I got SCARED. So I called Aiden's daddy, packed Aiden up in the car, picked up dad on the way, and headed to the hospital, just in case. He seemed fine, but I wasn't about to chance it! All the way there I beat myself up and Aiden's daddy reminded me "shit happens." I have such a wonderful husband!

On the way to the emergency room, I got a phone call. It was, out of all people, Aiden's surgeon, Dr. Niparko. The first thing he always does is ask about Aiden. So I told him exactly what had just happened. He asked me some questions about the situation, and told me what he figured the ER would do ... send us home and monitor him for 24 hours. Aiden was fine and we turned around to head back home.

So our conversation went on. Aiden's left coil has been consistently falling off since activation. In fact, right before activation, his audiologist noticed the left internal implant piece had fallen in his head. At that time, we talked about doing surgery to move it back up, but decided to do a trial run first. Well, after a week of constantly chasing Aiden around to replace the left coil I called our audiologist first thing Monday morning to order a coil with a longer cord. Which we did, and is working. But Aiden's surgeon thinks it's best to move it now, before the internal part moves even more and before it gets entrapped in scar tissue etc. I just got off the phone with him, for a second time today, and discussed how it's best to do this now, rather than later. And even though the longer coil may work for a bit, we're all looking for more of a lifetime fit and a fix that won't have to mess with the great electrode insertion in Aiden's cochlea. As much as I hate to see Aiden go through surgery again, we trust his surgeon and know we need to do this now.

SO ... this Friday, yes in two days, Aiden has to go back for surgery. It won't be near as invasive as the complete implant, but it's still surgery. I hate that he has to be put under anesthetic again, but I would hate to have a constant fight of keeping the coil on. We see how the implant has moved, but were hoping we could get around having to surgically move it. The good thing is, is that the surgery should only take about 30 minutes, with a small incision, and back wearing his CI and hearing with his left ear again within a week or two. If there's anytime for this to happen, the time is now.

Then to top the day off he had his 12 month well baby visit (we were behind with everything going on) so he had to go and get three shots today! But, he did weigh in at a good ol' 23 lbs. 10 oz., and measured 29 inches long! His ear infection is all cleared up and he's on track with everything ... well everything except listening and language.

"No, he's not babbling ... but he will."

"No, he's not saying mama or dada ... but he will and I'll tell the world about it the first time he does!"

"No, he's not turning to our voices ... but he's starting to!"

"All he says is 'mmmmm' in a moaning, truly annoying way, but he'll move on to new sounds soon ... I really, really hope."

"Although he's deaf, he has been given the miracle of CIs (his pediatrician was teary eyed at this point). And next time, I hope I can answer more of these type of questions with yes."

So, here we go with another mountain to climb in our journey. I thought I was going to lose it more than once today. We're given many challenges in life ... and honestly, I'd rather be given this challenge than many others. My child is healthy. What more could I ask for.

Monday, April 6, 2009

Thank You!

We're at a new point in our journey. Aiden now has both CIs activated and he's on the path to hearing. Last week was a rough one for me. Aiden was sick, his second ear was activated, my other kids had activities ... it was just nonstop and I was at my wits end. In my previous post, I wrote all about it, and as always, received such encouraging responses! So I wanted to take the time to thank you all, because it does take a village!

We have been so blessed with all the love and support we have received (and continue to receive) throughout Aiden's journey! Everyday I have some sort of email, message on Aiden's blog, message on Facebook, card in the mail, phone call, text with words of encouragement, advice, or just checking on Aiden and our family, etc ... the support we have is absolutely AMAZING!

Family and friends from all over keep up with Aiden's journey and are always reaching out with open arms. They listen to us share "another Aiden milestone" or bitch and moan about running from appointment to appointment; they offer words of encouragement; they say prayers for Aiden and our family. They read Aiden's blog and other deaf/hoh blogs to try and understand it all, they ask questions, they research, and above all, they are always there to LISTEN. Aiden's daddy and I have a wonderful support group through both of our families and all of our friends. We are very fortunate to have each and everyone of them in our lives. SO THANK YOU! We love you all very much and don't know if we'd still be sane today without all your love and support!

Then I have my circle of mommies who have a deaf/hoh child(ren). These moms just get it. Where would I be without them? When I found out that Aiden was deaf, the first thing I did was research all these professional sites that were very textbook - great facts, but not consoling. I felt so alone.

Then a good friend of mine sent me a link to Landon's blog and his mom had links to other mommies whose child was deaf or hoh, like Drew, and Christian, and Toes and Gage and Brook. You mean all these kids are deaf/hoh? All these kids have hearing aids or cochlear implants? I found what I was looking for! I immediately left a message on each of these blogs and heard back from each one of them ...

... and it was here that I started to find some peace about my son's deafness. From mom's who knew exactly how I was feeling ... they knew the words I needed to here. They were exactly where I was at one point. They gave me more than facts, they gave me hope. That was almost one year ago and this circle of mommies has done nothing but grow. As I walked along our path, I found moms to walk hand in hand with, such as Lucas' mom, and Ben's mom, and Danny's mom, and little m's mom and many more. Now I'm meeting mom's who are just starting their journeys and I just hope I can provide them as much encouragement as all these mommies (and so many more) have provided me!

In my desperation last week I heard from many of them saying, "I get it" ... "Yes, sometimes it does just suck, BUT" ... "IT'S OKAY, we all have these days". They provided me with words of encouragement, wisdom, success stories, advice. SO THANK YOU! I love being a part of such a strong community as I walk this journey with my son!

Then, there are also people I have "met" who are deaf and CI users. I love hearing from them because they open up windows into Aiden's world. A world I try to understand each and every day.

I received one response from Douglas, who is the oldest of seven kids, has bilateral CIs, and has a one year old little brother who has one CI and is on the way to getting the second. He gave me some suggestions on wearing the processors. He also said, "Diezel (his little brother) is starting to talk and he likes to listen to music with me." Love this! Two deaf brothers, listening to music together! I just "met" Douglas' mom not too long ago, and she writes this blog about her sons' journeys.

I also received a response from Rachel, who has bilateral CIs, has travelled the world, developed, blogs her stories on this website (along with the infamous Miss Elizabeth Boschini) and has provided me SO much hope through her life stories that Aiden will have unlimited possibilities!

Rachel commented to me, "...I cannot imagine where my life would be if I was born with normal hearing. Being deaf and having cochlear implants opened the doors to so many unique opportunities .... I also have always felt that being born deaf and having cochlear implants made me a unique person."

SO THANK YOU RACHEL & DOUGLAS (and Danielle, and Michelle, and Laurie and all the other adult CI bloggers who help me understand Aiden's world!)

Thursday, April 2, 2009

Tiring Week ... but He's Bilateral!

Our binky boy is now bilateral! He has both his "ears" turned on. I wish I could type this all with more excitement and happier emotions. It's just not there, not right now. Don't get me wrong, I feel so blessed that we live in today's age where my child has the opportunity to take advantage of such wonderful technology; I thank God everyday for Aiden and what he's brought to our life. But truth of the matter is, this week has brought tears, struggles, and heartache.

I'm sure a lot of it has to do with the lack of sleep I've had all week. Aiden's been sick and not his usual animated self. At his activation, his audiologist checked his ears and they were all clear. That night his fever spiked to 101. I blamed it on teething, because his fever went away. When nighttime fell again though, we started the sleep fight all over and after today's dr. appt. and 101.8 fever, we confirmed the ear infection made it's way through.

Anyway, for the first time in a long time, I cried. I cried seeing all this equipment on my son. I cried thinking about how I shouldn't look at his CIs as all this "equipment" but as the miracle they are that allows my son to hear my voice and all the beautiful sounds this world has to offer. I cried at the fact that as long as he wants to hear, he will always have to wear something on his ears ... this isn't a quick fix ... this is for life. I cried because my son is deaf and I hate it.

Not really.

Well I do, but I don't. Clear as mud? Of course I wish Aiden didn't have to go through all of this. Of course I wish Aiden didn't have to wear all this "equipment" to hear, having to crawl around with all these wires hanging off of him, ripping off his "ears" as he tries to crawl, me constantly behind him putting an "ear" back on. Of course I wish that I knew that he was going to be okay and that I could protect him from kid's mean words and adults staring, and all the therapy, and appointments, and hard work he's about to go through for many years so he can learn to listen and speak. Of course I wish I could hear Aiden babbling, saying mama and dada, and nonstop chit chatting that one years old do, when all he does right now is grunt and moan. GRUNT and MOAN. He was babbling more with his hearing aids. Every once in awhile now he lets out a mixture of sounds and I just savor the sound of his voice. SAVOR EVERY BIT OF IT. But it's very far and few in between right now. Of course I wish we weren't back to square one again.

Of course I wish AIDEN WASN'T DEAF.

But he is.
and it sucks ...

... at least for this week. and maybe next. I truly haven't had a moment like this since this day just a short month and a half after we found out Aiden was deaf. I think I've just been going so nonstop focusing on preparing him (and us) for the CI world. Staying positive ... moving forward to our new world. I have to remind myself, it's okay to have days (or multiple days in this case) like this. Obviously there's no changing who he is and honestly ...


I truly wouldn't, except that he would be able to hear. Honestly. Yet I know he is who he is and he's brought so much to our life. God blessed us with three beautiful children, and for some reason, chose Aiden's daddy and I to raise each of them. So even with all my tears, all my sorrow, all my wondering why, I am so happy he has blessed our lives. I know he's going to be okay.

Just watch. His personality, his determination and his fight (that is fighting mom trying to put on those damn processors on his ears ... man it's such a fight) reminds me everyday-this kid's going to be just fine. It's just been one of those weeks.

Here's his left ear activation video. Here's my baby ... my deaf baby listening with his left ear for the first time. (turn off the music on the right. And sorry about the wobbly video taking ... I don't have a steady hand like Aiden's daddy when it comes to video cameras!)

I am having trouble with Overstream to caption this right now. There are only a few beeps here and there and then at the end, Aiden's daddy is talking to him about the pop up toy as we watched for voice responses.