Tuesday, September 30, 2008

Learning to Listen

Aiden has really done well with his learning to listen. I brought in a video of me working with Aiden at home to therapy with Miss Helen and she picked up on some things that I didn't even realize Aiden was doing. Here are some updates on his hearing journey.
  • One of the first steps to learning to listen is sound awareness (detection) and responding to the presence or absence of sound. Aiden definitely detects sound, we see this at home. We can tell a huge difference when he has his hearing aids in vs. when they are out. He is VERY quiet when they are out, doesn't babble or play with his voice too much at all. When they are in, he is always making noises. He doesn't get very loud like I've read about other babies who are deaf/hoh, but is definitely a lot more vocal.

  • Part of the detection stage also includes localizing sound. Aiden is just now starting to "look" for where a noise is coming from ... SOMETIMES. Miss Helen noticed in therapy last week that when I talk, Aiden's face lights up and he turns right to me and smiles. I think he's starting to "know" his mommy's voice vs. other voices! This melts my heart.

  • He is playing with his voice making short noises (eh, eh, eh, eh, eh) and long noises (ahhhhhhh). Helen noticed this in the video too. I knew he was playing with different sounds, but didn't realize the long vs. short. So my constant aaahhhhh's and mooooooo's, and mmmmmm's versus the ee-ee-ee's and bop-bop-bop's and bu-bu-bu-bu's, are paying off! My nonstop narrating in long vs. short sounds (up-up-up the stairs vs. doooowwwwn the stairs) is working! It is all working.

  • Aiden has been making many different letter sounds - g (as in goat), d, b, ah, long a - I know these come and go and he may lose them, but to just hear him make them means so much! It tells me he's playing with his tongue/voice, it tells me he's getting something, it tells me my baby wants to vocalize, it tells me WE ARE DOING SOMETHING RIGHT.
I guess as a mom to two older hearing kids, I've become accustomed to these things just happening. There is not a day that goes by that I don't think about hearing loss. Yet, I have to take a step back and remember Aiden's deaf and all these "milestones" I didn't think twice about with my two older hearing children, are HUGE milestones for Aiden. GINORMOUS milestones!

We also started basic signs. In the beginning, we were not going to. In the last couple of months, we decided to start incorporating them into our everyday lives. Signs such as mom, dad, milk, I love you, good night, good morning, bath, cat ... simple things that are a part of our days. We have a sign for Ryan, Kailyn, and Aiden too. When we do sign, we create a "listening sandwich" (which I learned about in the recent Play it by Ear! seminar I attended). We always provide auditory input before signing the word and then auditory input again after we sign. So the first and last thing Aiden gets is auditory input. We, 100%, want our son to be auditory-verbal. Yet, we know there will be times he may be without his CIs and may need sign to communicate; plus we see it as a good bridge to verbal communication. We have an awesome parent-infant advisor that is helping us with all of this. She is an advocate of sign, but NEVER pushed it on us; she waited for us to tell her if and when we were ready. This is a whole other topic which I'll save for another post. BUT, I have to proudly say, Aiden is signing MILK! Once I figure out my new video camera, I'll post it.

WOW ... all this progress/happenings in six months. Plus, we're still set to head to Maryland in a few weeks, still on track with getting cochlear implants, still just living day by day and step by step. That's about all I can handle.

Tuesday, September 23, 2008

FM System on the Way!

I received more wonderful news today! Aiden's audiologist called to tell me we are getting an FM system!!! The one we're getting has the new Dynamic FM platform, which from my understanding after a great seminar I just attended, allows for optimal speech recognition in places with a lot of background noise, yet will automatically mute itself if speech is not present in the FM mic. This saves the FM user from hearing "air noise" and static, yet still allows for the user to hear the world around them. As I sat there in the seminar last Thursday, I was in awe learning about these, not even thinking I'd be told, in less than a week, that Aiden would be getting one!

What is an FM system (aka - auditory trainers)? All in all, they consist of a transmitter (that I would wear) and a receiver (that attaches to the hearing aid or CI). This allows for my voice to be directly transmitted to Aiden's hearing aids. Go here and here to read a quick overview. For more detailed info., search FM systems on the ASHA website to view studies, publications, and abstracts on them. There are also different types. This mom did a great job at explaining the three types. We are getting a personal FM system for Aiden, since it will be used at home or when we're out and about in places with a lot of noise.

Why an FM system? People with normal hearing can usually understand speech when there is background noise. Background noise, to people with a hearing loss, makes trying to hear that much harder. Hearing aids amplify all sounds. And in our household, with Aiden's older brother & sister (who both LOVE their music, have friends who "live" at our house, and are VERY loud in everything they do), background noise is a huge thing. But background noise, at home, is so much more than this too. It can be the washer or dryer running, the dishwasher, the air conditioner kicking on, the humming of any appliance, the water running as someone washes their hands, the tv from upstairs--noises, as a hearing person, I never was too aware of, until Aiden. Background noise is terrible too at places like a grocery store, the mall, anywhere there is a high traffic volume.

What an FM system will do is help drown out these "unwanted" noises and provide optimal listening capabilities, which will then in turn allow for optimal speech recognition. Some of these noises are great, as we do our listening walks throughout the house, but when we're speaking to Aiden they're not. (The FM system will work with his cochlear implants as well. Even though CIs have the capability of drowning out background noise, an FM system works to drown it out even more).

Distance is a major obstacle with hearing loss too. Right now, we are supposed to talk to Aiden within his "hearing bubble", which is six inches from his ear. Sorry, but I cannot have Aiden 6 inches from me at all of his waking hours ... I've tried, it doesn't work! An FM system will transmit whatever I say, from wherever I'm at, directly to his hearing aid and then on to stimulate that auditory part of his brain! So now, while I'm trying to get laundry folded, I can still sing "Wheels on the Bus", with him in the adjoining room, and hearing me. Ugh ... now that I say that out loud, I guess I'll really need to watch what I'm saying when I'm using the FM ... especially when I'm just in one of those moods! : )

How can you get one for at home use for your child?
  • Start, by talking to your audiologist. They should have some ideas of where to start.
  • Talk to Early Childhood Intervention/Parent Infant Advisor. Some states have an ECI program that automatically provides one to families, for home use, that have a child with a hearing loss. This is state by state though. I'd be interested to hear from you if your state does or does not provide this. I think they all should. Texas does not.
  • School districts provide them for the classrooms and some allow you to take them home. From what I've read, a lot of districts do not want you taking them home. Again, why wouldn't we provide our children with the best possible resources at all times of the day?
  • Visit your local Rotary Clubs, Elks Club, Masons Group, Lions Club etc. These clubs fund raise all the time to help children in need. There is a scholarship application you have to fill out (your audiologist should be able to help you fill this out).

We thank our wonderful audiologist for the constant encouragement to get the FM system, the education on the benefits of one (I never realized what they were all about), and for all of her follow up to help this happen! You are wonderful!

Monday, September 22, 2008

For Hearing, Not Teething!

Aiden has really been taking out his hearing aids EVERY CHANCE HE GETS lately. I put them in, he takes them out. The other day I counted 20 times of in and out, all within thirty minutes! I was going to try and count all day, but lost hope. I thought with him wearing them since he was 10 weeks, we wouldn't have a problem with this. Wrong. The other day, I heard a bunch of buzzing (which is so normal in our lives), knowing he had them out. Sure enough. I think he's mistaking them for his teethers. He's like Speedy Gonzales ... one and then the other ... I can't get there to stop him fast enough! And one inevitably makes it into his mouth and then he looks at me like, "Don't you dare touch it." (I found the other one from this pic on the floor!)So our solution ... pilot caps! After a few days of constantly in & out, I finally ordered some and they were here in less than a week. So for now, we're saved! Only problem, I measured his head a bit too small and he STILL can get them out ... just not as fast as mom can get over there to fix it though!(Oh, and that teether thingy in the picture is GREAT too! I think you get them at Target. We stick ice cubes in there for his teething. When they get older you can stick fruit in there. The covering is mesh so just juices come out. Aiden goes crazy with it!)

Thursday, September 18, 2008

Cheers, Tears & Lots of Chills

It's been some time since I've posted, and SO MUCH has gone on. I just have to say that I am a very blessed person, along with God, my daddy's looking out for me right now, and I feel it! Where do I start?!? I could really post about so much with Aiden, but I'll keep this to one of the biggest steps we've been waiting for ... not just his MRI results, but even more chilling after.

The first part of this is MRI results, but you have to read on! I have been through a lot the past few years, and I want everyone to feel my happiness in the most recent news I received. Not that I feel "I deserve it", but I feel my boy deserves it. But I do know, in the past couple of years, we have always kept our faith. I believe and I continue to pray for God to lead my way, for Him to take on my problems and help me each step. And I never give up on Him. NEVER. And He has taken care of us.

CHEERS: We went in and spent two hours with our CI surgeon/ENT this week for our MRI results. All in all, his results are GREAT. No abnormalities in structure. The hearing nerves are in place. Everything looks "normal". Which is good. Which is great. It doesn't answer our question about Aiden's hearing loss, but we're okay with that. Kidney ultrasounds, check, good to go. They did find an "arachnoid cyst" on his brain, but actually, the report said "suspected arachnoid cyst". Not definite, just suspected. Our Dr. said this is not uncommon (1 out of 10 to 15 MRI's show this), but is still referring us to a neurosurgeon to make sure this is nothing to worry about. I'm okay with this, I have that feeling that it is okay. His brachial cleft sinus, this will have to be removed, preferrably before he's a year old, for scarring and surgery remembrance issues. He also had a little bit of fluid in his ears. If the fluid doesn't clear up, then they'll put in tubes and remove the brachial cleft all in one surgery. We'll figure this out after a couple months of letting the fluid clear up with some antibiotics. All in all, MRI GREAT, brachial cleft, as long as it's not draining and infected, good to go, but get it removed before preschool age (I figure if he doesn't need tubes, they might as well do this surgery with the CI surgery).

Side note to parents on ear fluid: I took Aiden in to our pedi. about a possible ear infection, no fever, he just kept tugging at his ears. They said, yes there is some fluid, but no ear infection. I told them, he can't keep fluid because of his path of getting CI's. They wouldn't put him on an antibiotic and told me not to worry about it unless he started running fever. I knew I was heading to the ENT a few days later and sure enough, our ENT said no fluid allowed, what-so-ever, and put him on an antibiotic (and he still does not have an infection, yet this fluid is not clearing up). So, even this fluid doesn't clear up, they will put tubes in, because fluid is not allowed prior to any CI surgery!


We then discussed our move to Maryland. Our Dr. said he recommended we go see Dr. John Niparko, at John Hopkins Listening Center (which I HAVE known since day one is where I wanted to go), and that he would have his office contact John Hopkins and fax all of our info. there. I felt GREAT! (I have been having a hard time with leaving my wonderful team here, but hearing this, just reitterated this move was meant to be).

On the way home I got a call from our ENT's office. The people up at John Hopkins wanted me to call them directly. No problem, because I have called & emailed many times, trying to get appts. when they kept telling me they couldn't do anything for me until they had all of his audiograms plus some. I was more than happy to call and actually hopefully get somewhere. I called and left a message, feeling, once again, I wouldn't hear back.

I heard back. Within a half hour. She got Aiden's history, his audiograms came in the mail THAT SAME DAY (which I had sent 2+ weeks prior), and then , after chatting a bit, she said to me,

"Great. I'm going to schedule your family a surgery consult with Dr. Niparko."
"You mean, for him to actually do my son's surgery?" I replied.
"Yes, he'll be your s0n's CI surgeon assuming everything works out."

TEARS. SMILES. LOTS OF TEARS & SMILES (OH YEAH. AND LOTS OF CHILLS). You don't understand. I didn't understand. Five months ago I was told my son was deaf. As his mother I looked up every resource on the Internet and what I came up with, for whatever reason, is that I WANTED this doctor TO IMPLANT MY BABY. Why? I don't know, what I read IMPRESSED ME, it helped me in a time of need. Then this job literally fell into my husband's lap ... he didn't look for this Maryland job after I told him about this doctor, it just happened. Then my ENT (who I would love to do Aiden's surgery as well) recommends us to this surgeon when we tell him we're moving. Then we GET ON SCHEDULE with this DR. that I first wanted for my binky boy's surgery. The surgeon I wanted BEFORE I EVER KNEW WHAT WAS AHEAD OF ME IN THIS WORLD I'M COMING TO KNOW AND LOVE, is going to give my boy cochlear implants!!!


Tuesday, September 9, 2008

Excellent Presentation by Carol Flexer, Ph.D.

I wanted to share this presentation, http://www.hearandsaycentre.com.au/documents/CaroleFlexer-AuditoryBrainDevelopment-AParadigmShiftforChildrenWhoAreDeaforHardofHearing.pdf, that I saw from another mom on a list serv. This is a very informative presentation by just reading through it; I wish I would've been there to see Carol Flexer give it in person.

It reminded me that hearing loss is not about the ears ... it's about the brain. It reminded me of all I can do as Aiden's mom, to help "grow his brain" to hear, and how this in turn is so important for him to speak! It reminded me that all the hard work we are doing is going to enable my deaf child to not only hear, but to listen and to speak! It reminded me how important it is to keep those hearing aids in, every waking moment, no matter how much he pulls them out. It reminded me that every word I say to him, every book I read to him, every song I sing to him is worth so much.

I hope you get as much out of this as I did. I saved this to my computer and will go back and review it quite often. Just to remind me.

Friday, September 5, 2008

Another Footprint in Our Journey

Besides being at the hospital from 10am to 5:30pm, the day went quite well. We started with Aiden's ultrasound on his kidneys (to help rule out Branchio-Oto-Renal syndrome) and they looked "unofficially" nice & healthy. How can a mom not ask? I know it's not their job, but they know what they're looking at, and I'm going to get any info. I can when I can. PLUS, Aiden has BOTH kidneys! This is good, because my dad only had one and this is another sign of BOR.

One hungry, tired boy, waiting oh so patiently!

After the ultrasound, we had about an hours wait until the MRI. We got called back to start the process at about 12pm, but Aiden didn't go anywhere until after 2pm and my boy was HUNGRY! They were going to give him an IV and then drops to sedate him (I didn't like the IV thing before sedation), but then decided that the better bet was to give him a local anesthetic since the MRI was going to take almost 2 hours (on his head/ears & neck for the branchial cleft sinus he has). I'm glad they went this route because I didn't want them having to sedate him again through IV once the original "drops" ran out after 45 minutes. My hardest part ... watching my little man get the mask ... broke my heart and I just couldn't watch. "Strong mommy ... be strong for your baby ... he's going to be okay", is all I could keep telling myself.

I sat and waited, and waited, and waited. Finally, after about 2 1/2 hours, they called me back. My baby was awake (and very hungry)! By the time I got back there he had already sucked down 2 bottles of pedialyte. After snuggling my baby, I asked the question about how soon I could get the results, the anesthesiologist said our ENT should have them by next week and then gave me Aiden's MRI scans & ultrasound on a CD to take up to Maryland with me! How about that! I'm taking that CD into the ENT's office next week ... I can't wait two - four weeks for results, especially if I have them in my hand now, with no clue what I'm looking at!!

All in all, Aiden did great - all day! What a trooper he is! He just amazes me ... at 5 months old. I am so proud of him! On the way home I thought about all he's been through, all we've endured together, all we've endured as his parents, and we've only just begun. Yes, I have my bad days, my sad days, my angry days, but so much more I have my happy days. And I reminded myself, it's all what you make of it, and I choose to make it a great experience!

We just completed a big part of our journey, a piece I like to think of like a fork in the road. This piece will tell us which direction we need to go next. And no matter which way it is, we'll be ready to take that next big step. I have faith that God will lead us in the direction we're meant to walk. We're on our way! How exciting!

Thursday, September 4, 2008

Just a Little Stressed

I didn't realize when I woke up this morning how stressed I was about Aiden's MRI & kidney ultrasound tomorrow. I woke up to a call from the realtor's office that they wanted to do TWO showings on my house between 9 and 12 (yeah?!). WHAT?!? That's great and all, but I had to get Kailyn to school, Aiden fed, me ready, and clean, clean, clean ... all within less than an hours time.

SIDE NOTE: I've been meaning to post about our upcoming move, but have been way too busy. So there's a good possibility we're moving to Maryland, a state I do not know, but am sure will come to love. What's crazy is that when I first learned of Aiden's deafness, I did a lot of research. I told my husband, "We have to move to Maryland. I want Dr. Niparko (from John Hopkins) to implant his CI's." I then learned there are many GREAT CI surgeons throughout the nation, but there was something about John Hopkins. Mike hadn't planned this job. This job fell in his lap. How crazy is that? It was meant for us to be up there. So ... it's in the works, we're leaving within 4 - 6 weeks and I'm a nervous wreck about the whole thing. Gotta pack, gotta get all of Aiden's appts./records complete so we don't have any delays on getting his CI surgery, gotta find him a new team up there (which is so hard, because we have an AWESOME team for him here), gotta sell this friggin house, gotta find a new house, gotta, gotta, gotta do a WHOLE lot. So there's my "moving" post in a nutshell! I'll leave out all the emotion because right now I just don't have time for it! I do have to say that this wonderful mommy was a huge help in bringing some peace of mind about the area and has me very excited about it! *big sigh and a smile*

Anyway, (sorry, my ADD kicked in there) it wasn't until the lovely Miss Diana from my hubby's work said to me "Good luck with Aiden's MRI tomorrow", that I realized, holy shit. His MRI is tomorrow. My baby is going under. And it ALL hit ... I had to leave and as I drove away I just started to cry. I'm so excited to get this piece of the puzzle finished, but I HATE all my binky boy has to endure! I've accepted his deafness. I love every bit about him and wouldn't change a thing, but this is just a small piece of what he has to come. I hate that he has to get sedated. I hate they're going to have to poke and prod him. I hate that I'm going to have to sit there and be so strong for him when all I really want to do is cry like a baby myself and take this all away from him.

And yet, this is just the beginning. The beginning of letting Aiden hear. There will be more poking and prodding. There will be SO many more appointments we have to run to. There will be so much more going on than there is now in my busy, busy life. And even though I hate that my baby has to go through all of this, I know the day that I hear my baby tell me "I love you mommy" and he hears me say it back, all this craziness, all this nervousness, all this nonstop worry, will be well worth every bit. Well worth it all, for my little man.

Tuesday, September 2, 2008

A Day With Our Wonderful Audiologist

Last week we spent almost three hours of testing with our wonderful audiologist. Now that three hours included stopping to feed Aiden, getting set up for tests, and then all of the tests themselves. There is a good possibility we're heading up north (I'll write about this soon), so Aiden's wonderful audiologist Miss Tracy got us all prepared so when we do haul out, all of his test results are ready to hand over and we don't have to play a waiting game of getting all of these done. I type this and want to cry because I just love her and the rest of my team ... but again, this post is about his test results, I'll write about moving when I feel not as weepy!

Here are the tests he was given and his results:
  • Tympanometry test - This measures the mobility of the eardrum. It is not a hearing test, but is valuable in determining if a loss is conductive. We know Aiden's loss is not conductive, but they still do this test to make sure there is no fluid in his middle ear that could alter any further testing. He was good to go.
  • Acoustic reflex test (ART) - This measures middle ear function as well. Aiden's results were conclusive with his diagnosis of profound sensorineural hearing loss (SNHL). Go here to read more about this and the tympanometry test.
  • OAE (otoacoustic emission test) - This test helps determine if the loss is sensorineural. We have had this before, but Tracy performed another OAE to verify the test results from our initial OAE. This verified again that Aiden's loss is a sensorineural loss (most likey damage to the cochlea) vs. auditory neuropathy.
Then, in between all of these tests, we were in and out of the sound booth for behavior testing. Tracy first tested Aiden without his hearing aids. I didn't have to wear earplugs, because she put the microphones right into his little ears. I was amazed at when she called his name & said her "BOP,BOP, BOP's", not only did he show facial reactions, but picked his head right up and looked around like "where is that coming from?!" That was at around 80-85db ... WITHOUT AIDS!!!! When Tracy would play the static sounds though, there were some responses around 100db, but no more then that. Remember, Aiden's ABR shows no response to 110db sounds!

The tests with hearing aids were the same with the last booth test. Aiden showed response to spoken sound at about 60db with lower frequencies, but with static sounds he was more around 85db. I compared those static sounds to a monotone professor ... how boring! And even if we can hear them, we drown them out anyway! This was the last testing we did, so he was pretty sleepy and ready to just go home.

All in all, his test results were how our audiologist expected them to be and conclusive with all past testing. He has a severe to profound sensorineural hearing loss in both ears. He is gaining sound awareness through his aids and we are on the path of him looking to be a great candidate for cochlear implants!!! It was a very exciting day at the audiologist's! Aiden did a wonderful job and I left giving a huge hug, shedding some tears, and an appt. to come back and discuss the different implants. I'd rather do it with someone I trust and adore than someone I'm just meeting.

Oh yeah, we got new ear molds made too ... we're going blue camo! I can't wait to show them off!