A Serendipitous Moment at Costco

My older daughter Sydney, Peter, and I were picking up our "Happy New Year" cards at Costco yesterday (yes, we totally missed the Christmas card window this year), and I happened to see a boy with a bright yellow ear mold.  I looked to check that it wasn't an earbud for music, and it was in fact a hearing aid. I didn't think much of it, but I smiled, and wondered if they had seen Peter's bright blue hearing aids. I don't want to stalk people with hearing loss, but there aren't that many young people that I see, so I figure a smile of solidarity is a happy medium.

We ended up behind the boy and his mom in the checkout line, and I saw he had a cochlear implant on the other side!  I decided a little more than a smile might be OK...so I said to the mom that I noticed her son had a cochlear implant, and that mine was a candidate. She was friendly, and said her son had had hearing aids since age 2, and I think she said he lost all hearing in his right ear at 3 and got the cochlear implant then. I asked the boy if he liked his CI, and he said it helped a lot. He had slightly nasal speech, but it was completely understandable. Then I asked what brand CI he had, and they said Adcanced Bionics, and that they were so happy with the customer service.  Advanced Bionics is the brand we are leaning towards, and hearing the boy say he was happy with it was like a little candle of hope, and it made me feel like we were on the right path.

All the hustle and bustle of the initial diagnosis, research, and getting hearing aids has subsided. The busy schedule of newborn-6 month doctor visits is done. Even the Early Start and School for the Deaf programs are on break right now.  The lull is welcome, but also a bit strange. I felt like we had been swept into a calm pool when I was used to rafting the rapids. To make sure we didn't get stuck in the eddy I emailed Peter's ENT to see about scheduling the Pre-CI CT scan and possible MRI.

 The CT scan is to check inner ear physiology, the MRI is just because he won't be able to have one after he gets the CI (at least not without removing the magnet in the internal part of the CI). We don't have to do the MRI, but they say if he is still sleeping after the CT they might as well get the additional images. Turns out Peter's Dr. is on vacation, but she emailed to let me know she would work on getting everything scheduled as soon as she got back. We should get a call from Radiology/Imaging in the second week of January!  Another little bright spot:).

Crawling!

When I figure out how to post a video I will!  And he is a

Ready trying to pull up and get into mischief on the coffee table!

Milestone Note

Today Peter sat up all by himself!  He is also crawling/belly flopping/ crawling :). Time to gate all the stairs!  Luckily the gates which were out of stock last week are available again:the Everywhere Gate! And thank goodness for web shopping, because 
getting out of the house with three kids to go to the mall is not my idea of fun this time of year. 

 

Was that a sign?

We have three dogs. They are always underfoot, trying to kiss the baby, or barking for their food. So they are a big part of Peter's daily experience. We use the sign for PEPPER for Pepper, a shaking ASL "L" for Lundon, and an ASL "3" into an ASL"T" for Trinity.  Today Peter looked at Trinity and signed "T"!!! Maybe it was a total fluke. But, just like we do with babies babbling and getting excited when they sort of say a word, I ran over to Trinity and signed "T" and said (and signed) Yes!!!

Even if he didn't mean it, it was pretty cool to see that even a baby could make the T sign- which is thumb between first and second finger in a fist (like when your are saying "I got your nose!"). That would be a good first sign. The other day he made something that could be interpreted as a baby version of DADDY or DONKEY (insert joke here)- so I ran off to get a stuffed donkey since Daddy was at work. But since neither a donkey or Daddy was around when he did that, I am more inclined to think that was an accident.

Also Friday we went to the School for the Deaf, and even though I know Peter was tired, he stayed awake to watch everyone talk with their hands. He is always so happy when we are there! It will be interesting to see if more "finger babbling" is evident :)

School, next year?!

The 30th of November we went for a second visit to a private Oral school about an hour from our house. I think that's where I want to take Peter for the 2013-2014 school year, but I needed to see more. I chose a great day for it! It was pouring rain so hard we got drenched just getting to the car. Traffic was miserable, gutters were overflowing, and I was worried about accidents. BUT that was the only day my mother-in-law would also be able to see the school, and I thought it was important for her to see for herself how well these kids were doing.

We were a little later than planned (no shocker with the weather). Originally we were going to watch some of their Friday music assembly for the whole school and parents. We only caught the end of one song, but the kids were all enjoying singing and clapping.  Then there was story time, and the kids acted like any other kids- answering questions, laughing, even joking with each other. The director of the school found us and took us down to the toddler area. It's in another building, and it felt like we had to wade down a river to get there!  But it was worth it to see the class in session.

There were two 23-month old kids who had been implanted recently (one just a couple months prior) and one hearing child, who was a staff member's child.  There were another 2-3 kids who hadn't come due to the miserable weather, and I didn't think to ask their ages. In this class, two parents were helping out, and there was at least one aid, so each child was getting lots of attention and auditory input from the adult behind their chair, as well as the teacher.

The class was working on "containers" as an overall theme, and had different bags, and different objects in them to work with. One thing I noticed was the open-ended questions they used with the kids to allow as much communication as the kids were ready for. "What do you see?" was used instead of "what is this?" because then the child is always right, and can say lots of things they see on the object in question.

I was really amazed to find out that one child had only had their CI's active for a matter of weeks. Maybe the child had had some access to sound, or had lost hearing after having some, but he was already listening and starting to talk! I know that Peter will probably take more time before he talks, but he will also be much younger at activation.

My mother-in-law got to sit in for a while, too, and I know it really affected her to see these kids. She told my early start teacher, with tears in her eyes, that she finally felt like Peter "was gonna be OK".

Now comes the hard part- seeing how much, if any, the Early Start program can/will contribute towards the school costs. Also, the Oral School doesnt know what days of the week they will have toddler classes next year, as it depends on who enrolls, and how   many. Whether we go for two days depends on how much funding and it also depends when they have the two days for toddlers. Since I want to keep going to the school for the deaf on Fridays, if the toddler class ends up being Wednesday and Friday I might see if we could just do Wednesdays. I really don't want that, though, for so many reasons. First, Wednesday is a short day at the public school up by my house, and I would not have any wiggle room to be home in time to meet the bus (as I fully plan on putting my homeschooled first grader back in school for second grade). Also, I need to figure out where my preschooler will be in school next year. If the Oral school has class Tues/Thurs then I can put her in a nearby drop-off preschool she liked. If the Oral school has class Mon/Wed, I can't pay for Samantha to go to that preschool three days a week, but only go two. If the Oral school classes are Wed/Fri....well, I don't know what I would do for Samantha. Maybe she'd get home-schooled next year....So much that I know I don't know. It doesn't make me philosophical, just crazy.

Second Sound Booth Test

We went for Peter's second sound booth test the Monday after Thanksgiving. The girls came, too, and wanted to see the booth. Tara showed them how the Animals banged the drums when the sounds played. Peter laughed. I think he remembered.

When we sat down to do the test it seemed like Peter reacted to more noises, but he also seemed to be swiveling his head around to see if one box or the other would light up. He was also watching Tara VERY carefully through the window. He is so visually acute that it is hard to know what he heard and what he saw.

Tara thought she got a response at 70dB again, but again, it wasn't repeatable. She said she was hoping to see a response a little lower than 70, but couldn't be sure. We will try again in January.

Play Date with hearing aids

Friday after Thanksgiving we had a mom and her little guy over to play. The mom is hard of hearing and wears a hearing aid, and their little guy is just a bit older than Peter. The two boys have the same hearing aids, and similar hearing loss. The other little guy LOVED playing with the crinkly Mylar that our Early Start teacher gave us. He seemed to react to the sound more than Peter does....I hope it's only because he is a little older.

While the boys were rolling around, drooling on things, and grabbing crinkly things, I got to talk to the mom. She was raised to be Oral, and can lip read, and uses her hearing aid to help clarify what she sees. She learned ASL as an adult, and works using ASL now.  I think she wishes she had learned ASL as a child, too. Knowing how sensitive the topic of CIs might be, I did say "if Peter gets CIs" that I wanted to continue to add to his ASL vocabulary, that I wanted to give him everything, every opportunity to learn and succeed. She said her mother in law really pushed them to get their son CIs, but they hadn't decided anything yet. She said that before she learned her baby was deaf she thought there would be no question- if they had a deaf baby that would be that, but now it's so much more complex. I don't envy them their decision. For Peter, I can embrace ASL, but our family speaks English (and some French and Spanish), and we want the same for him. When your family language is ASL it might be more complicated.

The mom was so great about helping me with my signs. I know it must take extra work to understand my attempts at ASL.  I felt like I was back in Beginning Spanish, trying to express adult, complex thoughts in my two-year-old vocabulary ;)

I hope we get to see them again, soon. It will be good for Peter to grow up knowing deaf/hoh peers, even if they don't go to school together. Also, I really enjoyed getting to know the mom, and would like to get to know her better.

Would it be like getting teeth?

Peter is teething. I think I even see the teeth, right there below the gum.  Thank goodness he isn't using me as a teether anymore, though!  I think that in the next three weeks while Nana Bev, my Mother-in-Law, is here to visit, Peter will start to crawl AND get his first teeth. Things always seem to happen when more family is around....
Tonight Peter was up on all fours rocking back and forth. He even got one leg to move forward once before he rolled over. We applauded, he grinned, and tried it again. Babies have so many new things that just happen- like teeth, the desire to crawl, the strength to sit up.  It made me wonder if that's how Peter will view hearing. My mom said she thought it would be like," ok, I'm one now, that's how old you are when your ears start working". Just like he must be saying to himself about the six month mark and food and teeth ;)
I saw a man and his adopted daughter at the Monterey Bay Aquarium today. I noticed them because an aquarium employee or volunteer was signing to the girl about the Open Ocean exhibit. Then I noticed the girl had two cochlear implants. I told the man that Peter was a candidate, and he said he thought the young ones did phenomenally.. His daughter was 21/2 when she was adopted- and no one told her adoptive parents she was deaf. Maybe the Chinese orphanage didn't know, but....In any case she was implanted  a year ago at 5 1/2, and still relied heavily on sign.  Her father said she was making progress, but that it was much harder being implanted after 5 (being without language for 2 1/2 years probably doesn't help either). He also said that being silent for so long made the noisy world harder to adjust to, and it seemed like his daughter turned her CIs off if it was too noisy.  We said hi and introduced ourselves in ASL, then I had to run after My three year old!
 I hope that hearing will be a gift, and not a drama. I also hope that Peter can see the silence as a gift, too, and enjoy both worlds. Also, I am tremendously thankful that insurance here covers CIs, and that our insurance has been so easy to deal with so far. In China most poor people can't afford to pay out of pocket for CIs, so often their best hope for a child born deaf is to drop them off at the orphanage, and hope they get adopted by someone who can sign and/or pay for a CI. My heart goes out to the deaf children in Chinese orphanages, and I have so much respect for the several families I know of who have adopted special needs kids abroad. 

Fridays at CSD

I have said before how lucky I am to live within an hour of so many great resources for Peter. The California School for the Deaf, in Fremont, is one of those great resources, and I have really been enjoying my visits there. The people who work at CSD are great, and I feel like I have already learned a lot. My girls have been welcomed, too, and have enjoyed playing with the the deaf kids, and some hearing siblings of deaf children.

One Friday the parents had a workshop on ASL reading techniques. I was one of two hearing parents there. The speaker discussed how to embrace/ communicate both the language of the author and ASL. Finger spelling was really emphasized as a tool for kids learning to read.  Also using the ASL sign, showing the written word, fingerspelling the word, and explaining in ASL- using all of these tools together were suggested.  Changing signing size/space taken up is used as a technique to make things "louder" or "quieter"- e.g. signing BEAR from above your shoulders all the way to your waist could be the character in the book shouting "Bear!"

My ASL is not great, but working with one of the teachers to translate a storybook into ASL was so much fun! We did a book called "Thud!", and in just a few minutes I learned 5-10 signs.  I wish we had had more time to finish the story. The way you use your kinesthetic mind and your eyes with ASL is such a great Yin to spoken English's Yang- I wish more hearing kids were taught ASL. I think kids who are very visual or who need to move to learn might really be helped by including ASL in "regular " schools.  By the way, Peter was rolling around on a blanket screeching happily during this reading time- and no one was bothered ;)

Last Friday there was a special storytime at CSD, signed by the Superintendant of the school.  We were a little late and missed most of the stories. Note to self: leave on time next week. Then there was Playtime and snack in the preschool class. I saw my girls get a little frustrated with 2-year-olds taking their food or crashing their buildings, but I was actually happy that they didn't find anything unusual about the little kids. We did work on the signs for SHARE, YOUR TURN, MY TURN afterwards.

My girls really like the teachers at CSD. I really like the teachers, too, and the whole energy of the preschool. They have really interesting art all over and fun projects and interactive posters for the kids in the preschool. It is bright and cheerful and comfortable. I don't know if we could put Peter there for some Preschool, and an Oral environment for part-time as well....we will see in a couple years what makes the most sense. For now we are just going with what seems to be the best for Peter at this point.  Peter was happiest checking everyone out, of course. Lots of people signed to Peter. He loved it.  I even managed to have a couple conversations in ASL with no interpreter.  Maybe what I took away is not exactly what was said, but I tried;) Even better, I met a couple moms who want to set up play dates, and have offered to help me with my ASL!

My hope is that Peter gets a strong foundation for language with ASL, and that he enjoys ASL enough to continue using it as he grows up. I hope having peers, mentors, and positive experiences now will encourage the ASL use long-term, even if his hearing and speech are great. CSD is like a small private school, but it is public and free (for deaf students). It could be a good alternative to our local public schools if  the classes there keep getting bigger and the money keeps getting siphoned off by the state. But that is a ways off ;)

Deaf Community Center

This past month I have taken Peter to three ASL-using events. There was a special Pumpkin-themed event at the Deaf Community Center, and two Fridays at the California School for the Deaf, in Fremont. Across the board, the people were very friendly and welcoming. The people at the events did initiate conversations with me, even though my signing leaves so much to be desired, and they all gave Peter loads of good vibes.

I can be a shy person, so driving more than an hour on a Saturday morning with just Peter (possibly screaming the whole way) to attend an event at the Deaf Community Center where I wouldn't know anyone, and could barely understand the language, was daunting. I sweetened the deal for myself by arranging to have lunch with one of my longest-standing friends afterward. Nicole lives closer to where the event was, so it wasn't too hard for her to meet me there.  I got to the event, and after misspelling Peter's name (I used P at the start and end) I decided I REALLY need to master my finger spelling!  I learned the sign for Pumpkin, and watched the parents talk about colors and painting and pumpkins. I could understand something directed to a two-year-old if I knew the context ;). The adult conversation was beyond me- I felt bad when I couldn't even understand LIVE (where do you?). But I watched and tried to absorb some of it. There were interpreters, so I did know what was going on in the larger context. Peter loved it. He didn't want to stop watching to nurse or sleep.

I feel like the one thing I misspoke on was asking a hearing mom when her child had gotten his CI's. the answer was 23 mos. and 36 mos., but it kind of opened a can of worms with the other 2 people near us. I think the mom was using the Total Communication approach, and I can understand why as the little boy maybe had cerebral palsy, as he was in a wheelchair and didn't have very good hand control either, so neither mode (oral or signing) of communication was easy for him, and using both ASL and speech was what worked for them. The deaf woman running the event seemed a bit taken aback that I had brought up the CI's and just cautioned me to research carefully, as there were a lot of people for whom the oral route didn't work. She told an anecdote about a meeting where the speaker asked the deaf/hoh crowd who had felt like a failure in the Oral Education track, and most people had raised their hands, and when asked who had felt like a failure with ASL education no one had raised their hands. I get it. And I also figure that maybe not as many people who felt successful in the Oral world would have been at a meeting conducted in ASL. 

I will attend as many Deaf Community Center events as I can - there are only 8 a year or so, and some are too far away, as they rotate around the SF Bay Area.  The ASL immersion is great for Peter, and he loves it. Lunch with my friend is an added bonus.  I just have to remember to stay away from Deaf politics. 

First Sound Booth Test

Peter is now six months old, and he has had his hearing aids for exactly three months. Today we did the first sound booth test. I had never been in a sound booth before. It is a small, square, totally soundproof box, with sound absorbing walls, ceiling and floor. Entering I saw a chair, a window to the right looking out on the audiologist, and speakers with animals in boxes on top. Right in front of us was a clear box with a mechanical puppy. It could sit, bark, and make walking movements. It was supposed to "center" Peter's attention. On the left was a dark box with a rabbit who would light up and play a drum set. On the right was a drum-playing elephant.

 I held Peter on my lap, and T. would make the dog move/bark, then play a whooshing noise from one of the speakers. The corresponding Animal would light up and bang away on cymbals and drums, too.  Peter did turn to look at the lit up boxes, but just because he could see them. We did the test for about 10 minutes.

T. explained that some of this was just to teach Peter to associate sound, response and the reward of seeing the animals. She thought she saw him startle a little to the sound of her voice at 70 dB, and some eye-movement in response to the 1000 mHz noise. But she couldn't reproduce the responses. Even so, she thought it was better than expected! It's just another tiny point in the complete picture of his hearing. We go back in a month to add another point.

A Tale of Two Schools

Two weeks ago we visited Jean Weingarten Peninsula Oral Deaf School, and last week we went to the California  School for the Deaf in Fremont. Both of these schools had really friendly staff, nice kids, and classrooms full of fun stuff. The schools have completely different target audiences, and very different approaches.

The Oral School, Jean Weingarten, serves primarily birth to age 5, and aims to mainstream kids by first grade. They are mostly a toddler and preschool program, and their older students were more special needs or late-diagnosed kids. The classes there were all really small, and I can understand when you are trying to group people by language skill/age/developmental level you end up with small Groups. The classrooms were small, too, so I guess it all works out. The teachers there are all Teachers of the Deaf, and I saw lots of positive, encouraging interactions with the students. I got to see the speech/listening therapy rooms, which looked fun, but no one was using them when we were there. We got to meet some parents in their Family Center, but one thing we didn't see was the toddler groups in action. There were some babies/toddlers in high chairs having snack, but I guess I kind of missed the explanation on what group they were part of. The toddler area looked like a very well- stocked playroom, and was large, but still cozy. I think I need to see kids who are the same age as Peter will be using the area before I have a complete opinion. My Early Start teacher and I spoke with the head of the school, and she explained how they didn't teach ASL, but that they often used it as a bridge for kids when they got cochlear implants. She signed to Peter several times, and he liked the attention. I don't think that I will be driving the hour trip up there until Peter can actually hear something, but I may enroll him if/when he gets his bionic ears.  I need to see the toddler group in the classroom before I make any decisions, though.

The California School for the Deaf used to be on the UC Berkeley campus. They had to move, and got a huge, beautiful campus right across from a huge, beautiful park in Fremont. They serve about 500 students, from age 3-high school graduation. They have larger groups of kids in large light, airy rooms. They had amazing art and projects all over the school. The people we talked to were all wonderful, and all conversations were interpreted in ASL. Peter loved it. All the students seemed engaged and interested. It felt good to be there.  I am going to start going to ASL story time once a month, as that is open to the public, as well as their weekly deaf/hoh baby playgroup.  I know it is a bit of a drive, but I think giving Peter access to as much language as possible, and peers, is important.  Maybe Peter won't care that the other babies are deaf, too, but as he becomes more self aware he might. I also might meet parents who share more of my questions than the parents in the Santa Cruz Early Start play group, where Peter is the only deaf baby attending. My goal is to give Peter a positive early experience with ASL, and hopefully, even if he has Bionic ears, he will continue with it.  I hope he doesn't HAVE to attend CSD when he's older, but if did have to or if he chose to, I know he would get a good education there.

I am really lucky to have these two great schools within an hour from my house!

Sort of Sitting Up!

I plopped Peter on the floor this morning, with me behind him a little bit, and he sat up by himself....for a minute...before slowly folding over onto his legs (gotta love that baby flexibility!). Hooray for PJ! He is growing up so fast, and if my bathroom scale is telling the truth he has more than doubled his birthweight (considering he was born at 9 lbs, that's a lot to double ;)).

 All this growing brings the reality of a Cochlear Implant surgery date closer. It's both thrilling and terrifying to think that in six months my litte guy could have bionic ears, but that there is a big surgery between us and that bionic future.

We met with the ENT a little bit ago, and she said she would order genetic tests anytime we wanted to do them, but that there was no requirement for CI candidacy, and no rush. They just require a blood draw, but maybe we'll wait, and just do them the same time we do the CI. We aren't going to have any more kids, but if my husband and I are both carriers of a known hearing gene mutation, our daughters might be also.  And we could rule out Ushers, hopefully!  In any case the ENT said Peter did not present with any syndrome symptoms, so she wasn't worried.

The ENT also said that she could do simultaneous implants, or do the two surgeries fairly close together - maybe three months apart. I recently read of a protocol where the hospital did them 4-6 weeks apart! That hospital also did the surgeries at about 10 months, so those kids could be hearing binaurally by one year of age! I didn't ask the ENT about doing surgeries that close together. I figure it would be better just to get through it once if you are going to do them so close together! Plus Peter will be closer to 12 months, and as a big, healthy baby I think he would do well with just one longer surgery.  And the decision is still a ways off, since she said they schedule surgeries about two months out, so January is when we have to make the call. But it gets closer every day!

Other exciting things coming up: a tour of a local oral deaf school, and the local state School for the Deaf. I am so lucky that two great schools are within an hour of my house. I'll know more about their programs in a couple weeks!  Also, Peter's first sound booth test, and his 6-month checkup are both happening this month :)

Do I deserve to be here?

No, this is not a whine about my lot in life ;). I went to my first Early Start play group the other day. All families with kids under three in the county-wide Early Start program are invited to a bi-monthly play date in a special preschool classroom with some of the Early Start teachers and aids. The director of the program is so welcoming, the teachers and aids are so friendly and helpful, and the other moms are lovely. I really liked everyone there, but I almost felt like I had it too good to be there. Some of the kids have muscle tone issues, one has a feeding tube, one was born with half a heart, some have vision issues, and one has autistic tendencies but no diagnosis. These kids are all just as lovable as Peter, and I am sure their parents love them as much as we love Peter, but I couldn't help feeling like I was so lucky. Peter needs hearing aids, a cochlear implant, and some intense therapy to catch up in the hearing and speech areas, but he should be age-appropriate by first grade, if not sooner. Some of the Early Start kids might never be anywhere near normal. Some kids born with half a heart don't make it to first grade. I felt like maybe I didn't deserve to get all these free services when other people have so much more complicated situations. I felt like my developmentally on-target 85%ile, healthy baby was too normal....I do know that without early intervention Peter could face severe challenges, so logically I do know we need the Early Start services. We will keep attending because I really do like everyone at the playgroup, and I guess it's not such a bad thing to feel like you've got it good.

How do they know he needs those?

I was carrying Peter in a sling, and he was wearing his cute blue hearing aids when i was approached by a stranger who asked me out of the blue "How do they know he needs those?". I know she was just curious, and that she meant well, and maybe my standards are too exacting, but I felt like an "Excuse me,...." or "I just noticed, and I was wondering..." would have been a more polite approach. Ok, skip over the etiquette lecture. I figured it's good practice for all the questions I'm sure will come if/when my little guy has bionic ears. I answered politely, and hoped to spread some knowledge about the impact of Universal Newborn Hearing Screenings. I explained how the tests in the hospital are able to measure a newborn's brain's reaction to noise (earbud, electrode on the forehead) and that they weren't asking a baby to "raise your hand when you hear the beep" ;) I didn't get into the intricacies of the more in-depth ABR or otoacoustic emissions test, as the woman was already gushing over how lucky he was that we were able to catch the hearing loss early. I agree. We were lucky our state has Universal Screening. We were lucky our child was born now, and not in an era where haring less wasn't diagnosed until 2-3, or later. We were lucky hearing loss is now treated in a family setting instead of recommending institutionalisation. We are lucky that insurance covers the cochlear implant that Peter is most likely a candidate for. We are lucky just because we have such a wonderful baby. The only bum luck was that the last governor vetoed a bill to require insurance to cover pediatric hearing aids. Peter is lucky that the expense didn't delay us in getting him aided, but I imagine there are plenty of kids who have to wait while their parents apply for grants, or hope to get loaners or used aids at a discount. How lucky I am strangers can come up and ask me about Peter's hearing aids!

He's a hit with the ladies...

Peter is a cute baby. I know they pretty much all are cute, but my guy is adorable! Add in the blue hearing aids, and women are falling all over him! And since he is so visual, they are all amazed how alert/ tuned in/ attentive he is, but since that is his main source of information I am not surprised. I do wonder if he would be so popular if these women knew he is the kind of guy who is always putting his foot in his mouth, literally! Today Peter successfully shoved his foot in his mouth and started sucking his big toe. He also just last night starting trying to nurse and soothe his gums (teeth soon?)- and my yelping was heard by the rest of my family, but not Peter. I will have to come up with a different strategy to thwart that uncomfortable behavior. Maybe if I told him most women don't like biters, either ;)

Another ball to juggle

Peter is great, growing, rolling over, grabbing at things....now I can't let him wear his hearing aids in the car because he grabs them out and sticks them in his mouth. Maybe once we get the new ear molds the aids won't come out as easily, but until then I will leave them in if his oldest sister is sitting next to him, as she can gently take them from him, but that doesn't happen every car ride. Though, She might be next to him for a lot more car rides in the near future- I pulled her out of public school to do online school for a while, due to an ineffective teacher she was assigned to for this year. This might be an exercise in insanity to homeschool her, but I choose to hope that: 1) having Sydney around when Peter's Speech Therapist visits will be a great way for her to learn how to help Peter learn, 2) going to the Early Start play groups will give Sydney experience with kids with lots of different challenges, which could be a great foundation for helping others throughout her life and 3)that the online school and enrichment classes give her a strong academic base and she even gets ahead of first grade curriculum. One of my concerns about the teacher she was assigned to was that by the time the problems were obvious (and there have been problems every year) it would be right around the time Peter is due to have surgery, and I wouldn't have the resources (emotional or time-wise) to deal with the problems or get her caught up. So, I add another ball to the others I am juggling, and hoping they don't all land on my head. PS getting those new earmolds made - you would have thought we were amputating a limb - Peter did NOT like goop in his ears, so thank goodness it only takes a couple minutes on each side!

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!