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.