On the positive side...

Peter had his 4-month well-baby visit, and he's right on target for everything....except things like "turns to parent's voice" or "is calmed by parent's voice". Those things don't happen. My beautiful 85%ile boy is growing well, but as far as I can tell, has little or no awareness of sound, or it has no meaning if he does hear anything. We continue to wear the hearing aids, though they are falling out easily now, as we need new ear molds (next week). But it is a good sign that he's growing :). I was also thankful my son could sleep peacefully through the yelling (at the dogs) and the shop vac that was used when I came home after the doctor visit to find the garbage can full of poopy diapers knocked over and remnants of diapers ALL OVER the kitchen, the playroom, and the carpet I had JUST SHAMPOOED! Last thing, I was so happy and proud when PJ (I alternate signing Peter's initials and a sign for his name) rolled over front to back this morning, three times in a row :). Right on time ;)

CI- what should I push for?

My husband and I completely agree that bilateral Cochlear Implants would give Peter the best route to spoken language. What we haven't figured out is how to get there. I am hoping Peter has two ears as soon as possible, but I have to wrap my head around having two shorter surgeries, or one longer. General anesthesia, intubation, catheterization, IV, hospital stay, risk of infection due to hospital stay, recovery time. All those things would be easier to deal with as one time events, especially if the alternative would be to do the two surgeries just three, four or five months apart. I don't want to wait too long between them, since the second activation seems rougher than the first when it comes to sequential surgeries, but plenty of people do it that way. Even though it seems like a long time before Peter is ready for surgery, there are a lot of kids implanted at the 9-10 month mark, and if the other hospital does the implants earlier than 12 months of age, then all the imaging and everything else would be moved up, too. Can I even imagine my little guy going into surgery in six months? But every day he can't hear gives him more to catch up on...I have some feelers out to learn about the other hospital's program. I like and trust Peter's ENT, but I feel like I need to do due diligence when it comes to choosing the doctor who operates on my baby! Even if we end up with our current ENT, I will feel better having looked at alternatives.

Big Ears

It's only been a few weeks since we got the hearing aids, and six since we made the ear molds for them, and they already don't fit the same way! The tubes coming out of the ear molds were fine before, but now they are too short, and my little guy's poor ears are getting a little folded over :(. We go back in three weeks to make another set of molds, and since the the molds themselves still seem ok, I don't think it's worth it to bump up the appointment. One thing I have been wondering is if the ear molds affect how easy it is for the ears to equalize. We live just high enough for my ears to pop on the way home from the valley, and I wonder if Peter feels it differently. He hates the car right now, and I hope it isn't because the elevation change is hurting his eardrums! However, we just flew halfway across the country and the descent didn't bother him either time. He didn't cry or nurse, just slept. He wasn't wearing the HA's, as he was asleep, so I just don't know....

3-month birthday present

On Peter's 3-month birthday he got his Hearing Aids! I was shown how to clean them,and change batteries, which I was advised to do every Friday at least, even if they aren't completely used up, as he needs maximum power, good amplification to hear anything. All the buttons are deactivated so he can't mess with the settings, but that means I need to open the battery compartment to turn them off. The audiologist wanted to test the actual volume in his ear canal, but the tiny little tube wouldn't fit along with the ear molds, so for now they are set based on typical babies of his age and hearing loss. We will try that test a different time. Peter didn't (and doesn't) mind wearing his hearing aids, but he hasn't shown any major awareness of sound. I'm no expert in that area, though. What does a happy, extremely visually acute baby look like if he hears something? Maybe I will know more once therapy starts up again. Things I have learned in the last couple weeks of hearing aid use: 1) babies are moving targets and it is even more difficult to "aid" them as they naturally turn towards the side of their face that is touched 2) check the batteries! Not that they work, but that they are there...I opened (to turn off) one aid to find no battery, as he had knocked it free as I was putting the aid on hours before :/ 3) kangaroo position in the sling means less feedback than the sideways position 4) taking the HAs out for sleep means something like 5-10 times a day right now! 5) feedback is going to be a common noise until he can sit up by himself, as lying on a blanket, lying in the bouncer chair, lying in the carseat...lying down = feedback

The ENT lays out the next steps

The same day I got Peter's hearing aids fitted we had a meeting with his ENT to talk about the next things that would happen in order to make sure he was ready for a CI by 12 months. First, some genetic tests around six months. If they find a Connexin mutation, then they can be pretty sure that there is not auditory nerve involvement, and that there aren't other things we have to worry about...like eventual blindness (Usher's Syndrome is another genetic cause of deafness, and comes with orher complications.) They may not be able to determine the cause of his deafness, but if they do find a genetic reason it could mean our daughters are carriers also. Next, at about nine or ten months they will do a CAT scan, plus maybe an MRI. They have to lightly sedate kids for these, and they do them together so they don't have to sedate them twice. I understand that the CAT scan is required so they have a better idea of what they will find in the cochlea during surgery. The MRI is not as neccessary, but since they can't have one after they get an implant it can give them a clean bill of health. Finally around eleven months we would order the CI(s) and schedule the surgery. The ENT said more parents in her practice were opting for sequential, but she didn't say she wouldn't do simultaneous. I didn't think to ask her then, but I need to. She also said that a different Kaiser was perhaps more aggressive in their approach and did more kids. So now I need to investigate about who has done more kids, more of the brand we prefer, more simultaneous, more simultaneous kids....how long for one ear, for both, what problems that have dealt with, complication rate... My sweet little guy's ears are wiggling as he nurses. They are so perfect it makes me sad to think about an operation. At the same time, giving him access to ASL from now on and spoken language as early as possible seems like the best gifts I can give him when it comes to language and literacy.

Getting "aided"

End of June (Peter 10 wks old) I met with the pediatric hearing aid specialist, and things just keep moving forward! It was a crazy morning, as I had two appointments for Peter, and when I was leaving the house to drop my older kids off for a playdate (and because they don't want loud kids running around while they are trying to fit hearing aids) I realized the appointment was a half hour EARLIER than I thought! Aaaack, I was going to be really late! I called, and luckily they could still take me. Peter screamed the whole way there- and 30 min of wailing is enough to give anyone grey hairs. He wailed when we walked in, but calmed down after he was out of the carseat. Tara, the hearing aid audiologist that works with kids, was so sweet and gentle. She explained what they thought Peter could hear, and what he might be able to hear with the hearing aids. Unfortunately, Peter's loss is such that, even with super powerful, honking' big things and fresh batteries at leat once a week, Peter probably can't hear most of the sounds of speech. But there should be some benefit to allowing stimulation of the auditory nerve, and giving Peter an awareness of sound, so we ordered the honkin big, super powerful hearing aids, in blue. Peter hated the cold goop they use to take the cast for ear molds. I felt like I was torturing my child, and paying dearly for the privilege :(. California does not require insurers to cover pediatric hearing aids, and we aren't on Medicaid (which would pay) or eligible for all those benevolent societies that would buy them for us, so...$2000...EACH...man, that is more than I paid for my first car! I hope Peter can recognize SOME speech with these expensive baubles in his ears, so I wrote down the sounds he is most likely to hear: J M D B N. NG E U and Maybe I A O R So now I hope to write and illustrate a story using mostly those sounds. I am neither an author or illustrator, but oh well ;). So far my word list is short, but I am sure my scrabble-playing friends will come through with more words using these letters/sounds!

Voyage to a new land

I just read another mom blog about her deaf child, and she had a great write up about having a child with disabilities called "Welcome to Holland". I loved reading it because that is EXACTLY how I framed the situation to myself when we got the final diagnosis for Peter! I likened it to when I moved into student apartments in France for grad school- yes, a little scary, but it was because of the unknown, not danger. I was just in a new place where a different language was needed. And maybe I wasn't as fast as the natives in speaking it, but I could learn. And there are lots of helpful people if you look. I feel like I entered two foreign lands- one of ASL, since I want to expose Peter to as much whole language as possible right now, and a second world of technology and laws and therapy designed to help children with hearing losses. I have not yet started official ASL classes, so here I am a tourist off on my own reading a DK guidebook ;). I have gotten iPod apps, YouTube videos, signing time DVDs, and a few paper books. I am muddling my way through until the free family ASL classes start in September. But Peter knows what I mean when I sign (and say) CHANGE DIAPER, and he smiles when i sign YOU are BEAUTIFUL, or MOMMY LOVE YOU. I know my ASL grammar is probably lousy, but I figure that as I learn more, I can correct what I'm saying. For now, communicating is key, just like it would be for anyone newly arrived in a new country. I wish there was a book/app for "first words and phrases in ASL for hearing parents of deaf babies". They could give it to Anyone whose baby gets Refer on those hearing tests...just in case. I feel like I have a lot more guides when it comes to the other things. So many helpful websites, and blogs! I am voraciously reading others' experiences, and it is so useful. I don't feel alone on the journey to help my child, or make sure he gets a great education. Even though most people on the blogs and yahoo groups are not local, and I may never meet them, they are a fabulous resource and source of support.

Early Start

The audiologist had mentioned that Peter was eligible for Early Start help and that someone would come to our house. "Even out in the mountains?" I asked. It's not like we live that far out- just 20 min to towns on each side of us, but it sometimes seems like a ways to drive, especially for free services! Sure enough, there was a message on our answering machine wen we got back from NC. A woman trained as a speech therapist, among other things, wanted to make an appointment to come meet us and "evaluate" Peter for service eligibility. I am happy that the hospital and audiologist took care of sending our name- so much else on my plate that it was nice to just get the call and have Early Start be so proactive. I met our Early Start person a few days after we got back- as soon as I could really. I wanted to get as much help as possible! The woman assigned to us, TG, is very nice. I feel very lucky in that I feel she will be a good ally for the three years we are to receive Early Start services. That first day we just chatted, she met Peter, and then asked some questions to fill out a form establishing eligibility. In Peter's c ase it was pretty clear cut- he can't hear anything below 90 dB. She said the next step was "enrollment", which we would do the next time we met, and come up with objectives for her services for the IFSP (individual family service plan). We took care of enrollment the following week, and TG also started giving me all kinds of resources. We are borrowing signing videos for me and the kids to learn sign (and my husband if he gets some time), an ASL dictionary, and piles of information from organizations touting every kind of communication option there is! Even though our Early Start program takes a summer break and it was starting soon, we were able to schedule two additional sessions before the break, where we looked at language opportunities, and learned to sign a couple simple stories. All this before Peter was even 3 months, and the goals are to just to make sure the kids are diagnosed by 3 months! (3-3-6 goals mean that they hope to screen all kids within 3 weeks of birth, diagnose any losses by 3 months, and have intervention in place by 6 months)

What do you tell people?

How do you tell people your chid is deaf? It's not like there is anything obvious, and it's nothing to be ashamed of, but I wouldn't want people to think I was ashamed or keeping it a secret. I thought maybe I could do a birth announcement with finger spelled "welcome baby". But I haven't quite gotten to that yet. I will do a birth announcement, but with Facebook most of my friends and Family saw Peter when he was less than an hour old! Three days after the big ABR test were flying to Charlotte, NC for a family reunion of sorts. My brother-in-law is fighting cancer, and we wanted to bring love and support in person. My MIL had lost her husband to cancer a few years back, and now her daughter's husband...so she was emotionally raw already when I told her the results of the ASSR and ABR and she burst into tears. I was a little offended (even though I know she didn't mean anything bad!) and I tried to tell her that he was still a healthy happy baby, and he was just deaf. Maybe I am naive. I figured it would be a lot of work, but that he would grow up to be a happy, independent, smart, productive member of society, just like anyone else. Ok, well, like other smart, happy, productive deaf people. And we have great new opportunities in hearing aids and other electronic assistance that wasn't around a generation ago! Why shouldn't the world be Peter's oyster? I decided that since kids live up to (or down to) parental expectations, I was going to keep my attitude of "he's just deaf" when we were at the family reunion. Luckily, I have an awesome family (by blood they are my husband's, but now they are mine, too). Everyone wanted to cuddle the baby. Everyone talked to him. His Nana made him coo and smile by being silly with him. People were curious about deafness, but not pitying, or anything else negative. My little guy didn't get to go boating on Lake Norman (too small), but I think he had a pretty good time! Since the initial news and that trip I have told many people about Peter's deafness. For te Facebook crowd on the 3rd of July I posted a link to an ASL version of Katy Perry's "Firework" and dedicated it "in honor of the Fourth and my profoundly deaf son". I try to keep it matter of fact, but it can get awkward. A tipsy woman at a party thought I was being sarcastic or kidding- yeah, she said, those third kids can sleep through anything, "no, he's really deaf!" I said. She didn't really know how to answer that. Now his hearing aids are conversation starters (bright blue!) and I must say he is mighty cute wearing them.

More Hearing Tests

Peter had a follow-up screening test 3 1/2 weeks after he was born. They used little foam ear tips and an electrode taped to his forehead, and played a series of low clicking noises for each ear independently. It wasn't loud, but I guess it might have been as loud as normal speech. Peter showed no response for either ear. He was asleep in his sling for this test, comfy and snug, so he didn't care about it, but I was starting to be more concerned. The test had taken about half an hour, and since he got Refer, Refer (I was starting to dislike those words) we got to schedule a visit with the ENT and a three hour ABR test with the audiologist. Another 2 1/2 weeks later we had the first ENT visit. She said he had beautiful ear canals :). But no wax, debris or anything like that. She used a special speculum with a little air puffer to see if his ear drum could vibrate. It did, so there wasn't water behind it. Right after that, in the same set of offices we met with the audiologist for a short diagnostic test that was called a tympanogram I think. It showed that Peter's eardrum worked just fine. Then came the test that bounced sound off the cochlear "hairs". Very few echos came back. The audiologist explained that it looked like there might be some inner ear issues, and tat the hair cells might be damaged. I asked hopefully, "can they grow back?". Sorry, no, once they are formed, that's it. She wouldn't give any diagnosis until the ABR, but when I asked "Possible or probable that he's deaf?" she said "Probable". I cried a little then. Not because my baby was most likely deaf, but because it was a whole new world that I knew nothing about, and it was a bit overwhelming. My husband knows I'm a litte kooky, and he makes fun of me for this, but one of my first thoughts was, "man, now I need to learn TWO sign languages!" (I have been teaching my girls French, and I hope they become bilingual someday. I would hope the same for my son, whether in speech or sign!) The flags were all red for hearing loss, but the diagnosis wasn't official yet. A week before Peter was 2 months we had both his 2-month well-baby visit and the ABR a couple hours later. I love that my health care team is all connected. The pediatrician knew all about Peter's tests before we got there, and asked how I thought things were. I told heri didn't thnk he could hear anything, and when we got to the audiologist, she already knew what I had said. I am glad they are a team. I am glad I don't have to keep all the records at hand and memorize a bunch of information. The pediatrician was happy with Peter's growth. The audiologist was happy Peter was sleeping soundly...he was once again in the sling for the ABR test. Little electrodes, little ear tips. Lots of noises over the different frequencies and decibel levels. No response. Peter was still snoozing happily (we had paused the ABR so he could nurse, then he went right back to sleep) so there was time to do an ASSR, no idea what tat stands for, but it can go louder to measure more profound hearing losses. Same electrodes stayed on, same ear tips, just a different machine. Finally there was a response! So Peter did have an auditory nerve :) And Peter was severely to profoundly deaf, in both ears. by this point I was not shocked by the news. I had already been reading up on Sensorineural hearing loss, and knowing more or less what we were dealing with was a relief. I was still feeling overwhelmed and tired at the thought of all the work ahead, but now it was time to act. We had a lot to study, learn, decide and do. Next thing to do: amplification. Hearing aid consultation was scheduled on my way out of the Audiologists.

The start of "our story"

Peter was born end of April this year.  He has two older sisters, but neither of those births prepared me for Peter's entry into the world!  We arrived at the maternity ward at 8:03pm, didn't quite finish checking in, and Peter was out and on my belly by 8:23.  He was purple-faced, not from lack of oxygen, but because he came out so fast his poor little face was all bruised! I don't recommend the "precipitous" delivery, as the hospital listed it. I think it was a bit shocking to everyone involved- and a completely unexpected turn of events for me.

I couldn't sleep that night, as I just wanted to cuddle my little guy, nurse him, or stare at the brand new beautiful person I had been entrusted with.  I was awake when they came to take him for the hearing screening.  He was gone a while.  When the nurse came back she said that they had done it twice, and he got Refer, Refer both times, and that they had called someone to check the machine, as maybe it wasn't working.  They would try again in a couple hours.  I wasn't too concerned, but I made sure they did do the test again before the hospital got busy in the morning.  He got Refer, Refer again.

Refer, Refer. Sounds like a code. I now understand it is so your beautiful baby is not "failing" anything, but that you are going to be referred for more evaluations....The nurses and doctors were all very nice and careful to explain that babies often pass a second screening a couple weeks after birth, that there could be water behind the eardrum that didn't get squeezed out because of a short labor, or debris in the ear canal. They scheduled a follow up with the audiologist.

I figured everything was fine, but that Peter couldn't hear right then. I did start explaining diaper changes in ASL, just in case, and as I was planning on using ASL no matter what.  Since I had used ASL with both girls I already knew CHANGE DIAPER :)

I did pay more attention to noises and Peter's (lack of) reaction. We have three big, loud dogs that bark and sing for meal time, and get really loud if there are visitors. Never woke Peter up.  He slept through dogs, loud sisters, shop vac, everything! But I thought it would all resolve itself by the time we had more tests. In any case, he was nursing like a champ, surpassing his birth weight in just a few days, and was happy and healthy!

Maybe the hearing aids do work....

Three days ago was the first time my 15 week old son startled in response to sound. I realized that I would like to keep a record of all the milestones of things like that.  For me, for Peter when he is older, and for anyone else interested in our mundane adventures :)

Today Peter grabbed his feet! Normal developmental stuff....Also, My mom said he looked startled when her 80-lb poodle barked his loud, deep bark.  If he hears that he'll get a lot of listening this week, as BIG DOG G (our signs for Guiness)  barks a lot!