No Peas

My mat

2012-02-14T16:34:00.004-06:00

I started practicing yoga about four years ago.

I started slow and took a yoga basics class twice a week for over a year. I took classes with a teacher with 14 years of experience with newbies like me. I then moved to a level one vinyasa class and found that I absolutely loved it. I continued there for a long time and just recently added a heated power vinyasa class to my now regular yoga practice.

(I have never, ever been athletic or at all coordinated so imagine my shock when after many, many classes and a ton of practice, I was actually rather good at a physical activity.)

I love yoga for so many reasons and am quite certain that finding it saved what was left of my mental sanity after my boys were born and prepared me for everything that followed after. It not only makes me physically strong and flexible, it has made me emotionally strong and flexible. It is something I do for ME and me alone. No expectations, no comparisons, just me and my mat. Every class is different. Even a pose I have done a hundred times feels brand new depending on what I need from my yoga that day. It consistently challenges my body and my mind. It has made me more conscious, aware, alive. The concentration needed for tricky yoga poses leaves no room for any other thoughts. Your mind is ON THE MAT. No worrying, no grocery list making, no fretting over the laundry pile. You learn that those things can wait. It changes your perspective.

People constantly ask me "WHAT are you going to do with all your time next year with all three kids in school?!?!?"

(I usually refrain from saying a snappy comment. I can thank yoga for that too.)

Here is my answer:

My first priority is to be in my kids' classrooms as much as possible.

My second priority is working on our AG Bell chapter.

My third priority is YOGA. I want to focus on my mat as much as possible. Is that selfish? Maybe. But I know that yoga makes me a better Mom, wife, friend, advocate, leader, sister, aunt and daughter....so it is where I want to be.

Best kid ever

2012-02-13T16:26:00.001-06:00

Adorable

2012-02-10T16:11:00.001-06:00

My sweet Cameron.

He is the opposite of his twin brother in every way.

He is serious, methodical, particular, and left brain all the way. He can do a 100 piece puzzle without looking at the box. He can put together Legos meant for 6-12 year olds following the step by step directions. He furrows his eyebrows just like his Daddy. They are very much alike.

Here he is working so hard on his Valentines. Love.

Deep thoughts from Peas

2012-02-10T15:50:00.001-06:00

"Why do pirates like skulls?"

"I want hot dogs all wrapped in a blankey." (crescent rolls)

"Mommy, I think I want you to be my Valentine."

Wordless Wednesday

2012-02-08T06:56:00.001-06:00

Faith

2012-02-06T17:37:00.006-06:00

Today was my little dude's IEP meeting with his soon to be kindergarten team. It was wonderful to say the least. The professionals who will be supporting his education starting in September have all shown me that they are STUDENT centered educators whose number one goal is to be sure my child is successful next year.

As a parent, I couldn't wish for more.

As a former teacher, I know what a rare and wonderful thing this truly is.

As we opened the meeting, I was struck at how surreal it all felt. And I remembered...

Almost five years ago, another team of professionals came to my home to talk about my baby boy's future. This was long before he had cochlear implants, before he had hearing aids, before AVT, before everything. We had no knowledge, no connections, just a diagnosis.

One of the professionals asked us what our goals were for Peas long term. I pointed to the elementary school down the street and said: "I want my son to walk into that school on the first day of kindergarten with his twin brother." We had no idea at the time if this was possible, feasible or realistic. We just knew we wanted it. We committed ourselves to doing whatever we had to do for this singular focus. We changed our lives to make LISTENING an integral part of Peas' personality. We researched, networked, cried, made mistakes, and kept moving forward.

And so today here we were, in the conference room at the elementary school down the street, preparing for that exact goal to happen. Peas has worked hard. His skills are solid. His MAP is exceptional. Everyone in the room today had HIGH expectations for my sweet boy's ability to listen, speak and LEARN.

On September 4th, Peas and his twin brother will walk into the SAME school and take their seats in their kindergarten class. The journey is only beginning, we know. But we know that if we can attain this GOAL, the future possibilities are endless.

Love

2012-01-30T16:52:00.001-06:00

Peas: "Mommy, can you put some music on? It makes me happy."

Conferences

2012-01-27T18:32:00.004-06:00

I am so pleased with our preschool. It is absolutely the perfect place for my boys. We had parent/teacher conferences today and got wonderful reports all around.

"Cameron enjoys friendships at preschool. He is a good communicator and shares many thoughts and ideas. Cameron has made great improvement in doing things for himself and is beaming when he is able to do something new."

"Noah is very friendly and is often engaged with others during choice time. Building activities and small manipulatives are a favorite of Noah's. We are continuing to work on fine-motor skills with Noah and having him try to slow down."

Both boys can count to 30+, can create patterns, can match objects one to one, can discriminate between big/bigger/biggest, recognize all their shapes, all their colors, can recite the alphabet, can identify all the letters and numbers 0-20. They both understand rhyming and can produce letter sounds.

We went more into depth about Peas and the teachers asked questions about the inner workings of his CI's. Both teachers commented on how outgoing and gregarious Peas is and even said that sometimes he misses directions because HE IS SO SOCIAL THAT HE IS TALKING TOO MUCH! Of course this made me blissfully happy. Yes, he needs to stop talking when the teacher is explaining. It is something to work on. But it's a problem I am thrilled
to have.

/m/ and /n/

2012-01-26T08:30:00.003-06:00

Peas has a new coding strategy called Fine Structure. It is a different way to program his CI's that primarily focuses on the low frequencies and is supposed to provide a richer sound quality.

Peas has always had a hard time discerning the M and N sounds. He makes mistakes like "mest" instead of "nest" and "meed" instead of "need."

Last night I heard him spontaneously say MINUTE correctly (instead of his usual "mimute" pronunciation.)

So excited!!

Ten on Tuesday...late

2012-01-25T08:07:00.005-06:00

1. Every year with twins gets better. They can do so much more independently. The simple act of being able to put on their own jackets, hats and boots is life changing.

2. Mia starts her orthodontic journey tomorrow. Yes, she is only seven. We begin with a baby tooth extraction which I am told takes exactly five minutes...but it's still not fun. I told her the Tooth Fairy would bring her something extra special.

3. Peas is adjusting to his new MAP very well. He is used to how his own voice sounds and says he likes it. I haven't noticed a change in his speech, but I can say that it is still
crisp and clear.

4. Did you get your conference registration packet from AG Bell? The conference is this Summer in Arizona. What an incredible line up of presenters. I am definitely going to be there. What about you?

5. Social networking is an amazing thing. Because of this blog, I have met people from all over the world who also have children with CI's. We share ideas on Facebook, call each other on the phone, send a quick text to ask questions-- it is incredible to be connected so easily and instantly with other people who get it and have advice to share. I have learned more from my circle of Moms than I have from any professional.

6. I can see green grass in my yard today. It is January 26th and I live in the midwest. This is highly unusual and I love it!

7. Still prepping for the big IEP meeting in two weeks. Will share more when it is all done.

8. The Lego obsession continues in our house. Right now everything is spread on the dining room table. I really want an actual Lego table, but have yet to find one that I really like. Good thing I have a handy husband. He is going to build something amazing for our boys. Love.

9. My beloved yoga instructor is heading with a group of 15 on a retreat
to Belize tomorrow. Seven days. The tropics. No television. No distractions. Just yoga. I wish I could say that I was one of the 15. Someday...

10. Just look at the face on my little boy. Cute stuff.

Mapping excitement

2012-01-18T20:38:00.005-06:00

We went to see the audiologist today. A perfect audiogram is what started our visit (MAP is now 3 months old and we're still at 20-25 across all frequencies for each ear individually) and it looks like things are holding steady for now.

After some serious leg work done by our fab audiologist (yes, she actually read research articles, spoke with consultants, asked our AVT's opinion and had our region's traveling Med-El consultant come to the appointment) we decided to go ahead and try a relatively new coding strategy called Fine Structure.

Here's a link to a description on Med-El's site: http://www.medel.com/int/show/index/id/120/title/The-Fine-Details-of-Sound

(I am still having problems dropping links into Blogger with my iPad. My apologies!)

Anyhow...the basic idea is that Fine Structure creates a richer sound quality for the user.

Within 15 minutes of leaving the appointment, Peas was giggling to himself and chatting away in the car. I asked him what was so funny and he said: "I sound crazy...I sound like a microphone." I pressed further and discovered that other sounds (my voice, the movie he was watching) sounded the same but that his own voice sounded different. He thought it was totally hysterical and that it was a good change, not a bad one. It will be interesting to see what he thinks once he gets used to it and how 14 kids in a classroom sound at school on Friday. I am so glad we have the opportunity to try new things like this and think outside the box. It makes ALL the difference.

IEP prep

2012-01-16T10:35:00.010-06:00

It is almost time for my little guy's IEP meeting with his soon-to-be Kindergarten team. I love the school and the teacher is extraordinary. It is a great feeling to know my boys will be in good hands.

Wanted to share a wonderful free resource from AG Bell called Parent Advocacy Training. This program is an easy to understand guide through the laws, how to plan out an IEP document, how IDEA works and the rights and responsibilities of both the district and the family involved. I would highly recommend it to all parents with a child with any kind of hearing loss once it is time to get involved with your local school system.

Another thing I like to do for IEP meetings is put together a binder for each person present. I always include a current photo of Peas, his most recent audiogram and audiology report, any recent speech/language testing that has been done, teacher reports, and a personal paragraph about his strengths and areas he needs to focus on, as well as things he likes to do for fun. I have also included in past meetings articles related to AVT, classroom acoustics or any other topics I thought would be relevant and useful to the team. It is really worth the extra effort to do this preplanning and gives the new teachers in particular a great snapshot of my child.

First snow

2012-01-13T13:43:00.003-06:00

Yes, it is January 13 and this is our first snowfall! Yay! This delayed Winter has been so wonderful. But it had to end sometime...

Reading

2012-01-13T06:56:00.002-06:00

My husband and I have always been readers, even as kids. Mia seems to be taking after both of us which is so thrilling to me. She is still learning to read but I know that in third and fourth grade she will start "reading to learn" which will be crucial for her success in school. Reading is everything! (It comes easy to her which I know is not the case for all seven year olds.)

One of the suggestions made to us early on in AV therapy is to read as much as possible with your child. It was something easy I could do at home, I didn't have to be crafty, it didn't cost anything, and I knew I could to it RIGHT. No stress. We started going to the library weekly and still do. We have books all over the house and I read to them many times during the day. We have rarely missed "Bookworm Club" before bedtime. As a result, the boys have become really great at listening to us read. They will sit for what I think is a relatively long time to hear our latest pick. (Lately they are very into the Star Wars early reader series. They are about 15 pages long.)

I know I have mentioned "The Read Along Handbook" by Jim Trelease before. It is a must read for ALL parents, in my opinion. It explains why reading aloud to your kids is so incredibly important and also gives book suggestions for every age.

Memory Monday

2012-01-09T07:48:00.002-06:00

Peas at his first birthday party. (I have exactly zero pics of Cameron from this day. He was horribly sick with ear infection #486 and spent most of the party in bed.)

Sunday

2012-01-08T07:02:00.003-06:00

There's nothing like a Sunday morning.
A cup of coffee, pajamas, boys running around playing Legos and acting out scenes from Star Wars. (They watch The Clone Wars every Friday night.) I love to listen to their little stories which can surprisingly be acted out even before Peas puts his CI's on in the morning.

I am happy to report that the bounce house went off without a hitch. The static was minimal. I only rubbed a lavender scented dryer sheet on my little boy's head a few times...

Hard to believe, but we just scheduled
Peas' kindergarten transition IEP meeting. Peas is going to the SAME elementary school as his siblings and neighbors. A goal we had the FIRST day we started AVT almost five years ago. Before hearing aids. Before CI's. Before everything. That goal has been the reason for every decision we have made in this area. And now it's almost here. Amazing.

Bounce house

2012-01-06T06:24:00.004-06:00

My boys are invited to a birthday party at one of those plastic-slide-maze-static electricity-heaven bounce house places tomorrow. I have fervently avoided them at all costs, but I hate to have them miss the party because of my neuroses.

I am not worried about losing equipment. I will use his back up processors (with the old coils) just in case in addition to a critter clip and maybe some toupee tape just to be extra sure. (So maybe I am just a tiny bit worried.)

What I am worried about is static. We have never had a problem at those fast food playground places (don't judge, the weather is bad where we live for most of the year. I get desperate) and only once have we had an issue on a huge slide inside in the dead of Winter. Med-El Opus 2's have a static guard feature of sorts. The processor automatically shuts off if it senses a charge that could potentially wipe out a program. That happened one time and as soon as I turned them back on, all was well.

But I have never tried them in a big bounce house. It is not an feasible option for him (in my opinion) to go inside deaf with 20 other kids.

Thoughts?

Lesson learned

2012-01-05T08:48:00.005-06:00

Long time readers of this blog know that it took an abnormal amount of time for Peas to get a decent MAP. It took 15 weeks after his initial stimulation for him to detect ANY discernible speech sound and many months after that for him to have enough stimulation to make sense of what he was hearing. Despite the fact that he had his surgeries at 15 and 16 months old (which is too old in the first place considering he was born profoundly deaf) he didn't start learning language until he was just shy of two years old.

My child who was diagnosed with permanent profound hearing loss at just SIX WEEKS old heard no usable language until he was TWO. Unexcusable. His first words (hi, mama, dada, uh oh, etc) happened when he was exactly 24 months old.

How did this happen?

The blame can be placed in a variety of places depending on your perspective. Mistakes were made all over the place, including by me. I should have listened to my instincts better, screamed louder, researched more.

And almost three years later, you would think it wouldn't matter anymore. Peas has made phenomenal progress. He is an average kid; not at the top of the pack but not at the bottom either. He is smart. He is an inherently talkative kid. The time lost will likely never affect his future success.

Somehow, though, it still bothers me. And I don't think I will ever shut up about it. It changed me. For better or worse, I look at situations much differently now and make decisions using my gut much more now. I hope that someday I will have enough perspective to see that all parties involved are better off because of this experience.

But I will never get over it.

Wordless Wednesday

2012-01-04T14:41:00.001-06:00

Winter Break

2011-12-30T07:37:00.002-06:00

Lots and lots of Lego building...
Plenty of baking....
Took my sweetie to the ballet...
Painted pottery...
Hung around in pj's...
Celebrated Hanukkah...
Read books...

Enjoyed each other's company.
And you?

The D Coil is here!

2011-12-23T06:44:00.003-06:00

We are so thrilled to have Med-El's latest technology in our hands. The D coil is a more power efficient coil system that increases battery life by 30% for rechargables and 50% for disposibles. (Disposibles used to last 3-4 days and now they last 5-7.) The coil is also much thinner on the head which means less knocking off and less wear and tear on the cables.

Our insurance does not cover disposible batteries (three per ear) so we choose to use rechargables. They are really easy but in the past we only got 10-11 hours per charge which meant battery changes every afternoon. Not the biggest deal, but definitely an inconvenience.

I am SO pleased to announce that we are now getting 16+ hours on a single charge with the D coil system which is more than an entire listening day. So much better!

Updates

2011-12-20T11:04:00.004-06:00

It has been such a busy December!

The boys had their holiday program at preschool last week. All 30 4K kids (two classes) got up in front of a huge crowd of proud parents and grandparents and sang all sorts of holiday songs. They had been practicing for a long time with their music teacher and even learned to play the handbells. It was amazing. Peas knew every single word of the Hanukkah songs but had some trouble with the longer Christmas songs. (Some of the kids just stood there with their mouths shut so I think he did pretty well!) Both boys SANG with all
their might and enjoyed every second. The miracle of the moment was not lost on me. Without cochlear implants and AVT, Peas would not have been on that stage.

My sweet Mia made her second appearance in her ballet company's Nutcracker show this past weekend. The kids practiced every Friday night for six months for their shows and they did not disappoint. So proud of my girlie.

As mentioned in my last blog post, an exciting position fell into my lap a few weeks ago. The Wisconsin chapter of AG Bell has been in existence for a few years, but has never actually done anything. Super excited to share that the chapter is now alive and well and going to start planning some exciting programming for parents and professionals in our state.

Still here

2011-12-09T18:01:00.003-06:00

It has been an embarrasing amount of time since I have blogged. I hope that someone besides my Mom is still reading. (Hi Mom!) I have no excuse for my lack of update. Well, unless you count Pinterest as an excuse.

Things are otherwise great here. All three kiddos continue to love school and are doing well. Peas is still right in the mix of kids at school with no problem. His IEP meeting will be coming up soon and we will start talking about Kindergarten. I can hardly believe it is coming so quickly.

Mia is practically living at her dance studio in preparation for her big Nutcracker performance next weekend. (This year she is a gingerbread cookie, a soldier and a peppermint candy) I also surprised her with an early Hanukkah gift. We are going to see the Milwaukee Ballet Company's performance of The Nutcracker in a few weeks. I have never seen it and Mia was over the moon when we told her. Her eyes are going to pop out of her head! I can't wait!

I have an interesting new position coming on the horizon...not sure what I have gotten myself into but I am hoping it will be a great opportunity for parents like me in our state. Stay tuned!!

Only Five on Tuesday

2011-11-22T17:18:00.003-06:00

Busy week....

1- SQUEEEAAAL...one of my sweet friends and I went to see Breaking Dawn last weekend. Yes, we are *those* Moms. It was weird and interesting and wonderful. I definitely need to see it at least a few more times to really let all of it sink in.

2- I always look forward to Thanksgiving. Nevermind that my Mom makes the best turkey and stuffing, it is such a fun holiday to sit around, eat, drink wine, and relax. And there's always leftovers. I am thankful for so many things in my life. (Post to follow) We are very lucky.

3- We had three excellent report cards last week. Mia is doing great in school and loving every minute. Her teacher is extraordinary and we are so pleased. She loves the kids AND challenges them to always do better. The perfect combination. The boys also got glowing reports. Everyone is doing exactly what they should be and that makes me extra proud. The team supporting Peas is fabulous and so thrilled with how well he is doing in school. He's just another four year old in exactly the right place. Love.

4- I got a new toy a few days ago and am slowly learning it. Technology never ceases to amaze me. I have been playing with it at our local library until we get Wifi in the house next week. (Yes, we are still not into the current century. We are getting there...)

5- We went to see Peas' AV therapist today. Since the last mapping debacle, we want to be extra certain that his language skills and articulation are on track. I could immediately hear an improvement in his speech after he was mapped, but I wanted some professional ears to hear him as well. He did great. His scores were all within age appropriate range. (His chronological age is 4 years 8 months and his artic score was 4 years 5 months. His language scores were between 4 years 2 months and 4 years 6 months. Works for me! His hearing age is 3 years 1 month.)

Field Trip

2011-11-15T18:51:00.005-06:00

Peas and a Torosaur

The butterfly room

Peas and I had some rare one-on-one time today that didn't have anything to do with his ears! He got a much needed haircut and then chose to go to our local museum. My mother in law takes the kids all the time, but I haven't been since I was a child. It was amazing. Parts were new to me (the IMAX theater, planetarium, and huge insect exhibit complete with live cockroaches and scorpions) and parts were exactly as I remember from elementary school field trip days. (My personal favorite being the Streets of Old Milwaukee) and Peas was happy to show me around and tell me all of his favorite areas.

Before we walked into the butterfly garden, (over 500 live butterflies inside) one of the museum curators explained the rules to Peas. Don't touch the butterflies, watch where you walk, don't climb on the rocks, etc. Peas listened intently and said a little "ok" after the man was finished.

I was moved. It was such a little thing, but I will never forget it. This sweet old man likely didn't even notice that Peas had something on his ears. He just got down on one knee and spoke to a four year old kid like he probably does many times each day.

When Peas was first diagnosed and before I knew what was possible for kids like him, I worried that Peas would somehow miss the BIG things because he is deaf. Now I realize that it's really the little things that mean so much to me. Hearing the cicadas outside in late Summer, telling knock knock jokes at the dinner table, listening to a stranger explain the rules at the museum. They are everyday miracles that stop me in my tracks.

Choosing a Device

2011-11-14T06:52:00.004-06:00

Even writing that title makes my stomach lurch.

A Mom I know is going through the long, difficult and emotional process towards getting her lovely daughter a cochlear implant. She asked me how I chose the manufacturer I did. Instant lump in my throat.

(In the interest of full disclosure: we chose Med-El. Obviously I am biased because that is what I live with every day and fortunately have been exceptionally pleased with that choice. The other two amazing and incredible companies are Cochlear and Advanced Bionics.)

This Mom is meeting with her CI team today to look at all three devices in person. I will never forget this appointment. The external hardware for all three come in a large metal suitcase of sorts that looks very high tech and actually kind of ominous at the same time. In our case, they were all opened and we were allowed to touch and look at all the parts and pieces. Obviously now three and a half years later, I know exactly what every piece and part is and does. I can tell the difference between companies the instant I see it on a person's head. But at the time of this appointment, it all looked exactly the same. And we had to choose a company NOW. And that decision was for FOREVER. And no one gives you real guidance.

So my advice to this Mom was this: you really can't make a wrong decision. All three companies make excellent internal and external equipment. All three companies have great success with their implants. I know kids who have done exceptionally well with all three implants. The "bells and whistles" (battery life, warranties, aesthetics, customer service) are very different, but the end result is the same.

What advice would you give?

Photo update

2011-11-11T14:35:00.002-06:00

My baby is a Brownie.

Peas ready for the dentist.

Lightning McQueen, Sparkly Witch and Darth Vader!

Birthday Musings

2011-11-11T14:11:00.005-06:00

( Yes, I took a photo of my brunch.)

Yesterday was my 40th birthday. Yes, I am FORTY. And yes, that is just fine with me...wrinkles and all.

I have a supportive, funny and never boring family. Three perfect kids. Lovely friends all over the world. A husband who works long and hard so that I can be a full time Mom. (And do as much yoga as I can squeeze in)

My sweetie and I celebrated last weekend with a decadent spa weekend at this incredible resort. It was heaven. Massages, cozy fireplaces, champagne, lounging, room service, two crazy hard yoga classes, the most incredible brunch buffet I have ever seen and lots of quiet. It is rare that we get away for two whole days by ourselves. And after almost ten years together, weekends like this remind us that we still like each other. Yay.

I am lucky. I have no problem with this BIG birthday because I am in a good place.

Forty is fabulous!

The past week

2011-11-03T16:20:00.003-05:00

A quick update:

It seems that Peas is now able to fully hear all the speech sounds in the high frequencies. He is no longer deleting /f/ and /s/ in his speech and sounds much more clear after his new MAP. He said that he likes how things sound since we saw his audiologist. He said that he can hear me better now and that it "sounds really good, Mommy!" The trick now is for him to tell me when it doesn't sound good anymore. We will work on that...

His TOD observed him at school on Monday and thinks he is doing well. She also mentioned that his teacher thought he sounded clearer after the new MAP. I wish I would have heard that directly from his teacher, though. Definitely something to work on. We are also going to start having his teachers use the pass around microphone in class when other students are speaking.

Despite this great report, we still have lots to work on with Peas. His thoughts are not always as clear as they should be. This may just be his personality and have nothing to do with his ears, but it is still an area of weakness for him. He still doesn't sound as clear as Cameron consistently does. I was always told not to compare my boys, but now it is being asked of me. Is Peas as clear as Cameron is? Are his language skills on par with Cameron's? I am not sure. Peas certainly does not sound anything like or have language skills anywhere close to Rock Star boy #1 or Rock Star Boy #2. Is that acceptable? Is it a fair comparison? Does Peas have gaps in his skills? I would like to believe I am a competent "Therapy Mom" but I am certainly not a therapist. We are going to have him evaluated in the next few weeks to see where he is. I know he is progressing. I know he is doing great in preschool. But I never, ever want to become complacent. Bumps in the road are fine. But our eyes need to be WIDE open. No one ever said mainstreaming was going to be easy...

If you can't HEAR the sound...

2011-10-27T06:43:00.004-05:00

You can't accurately PRODUCE the sound.

As expected, my little guy needed a new MAP.

We walked into the office and after I described what was going on with Peas, (his longer sentences sounded mumbled, he wasn't saying sounds like /f/ and /s/ correctly) I assumed we would head into the soundbooth to see what was up.

Nope. Instead, we stayed right in the office and Peas repeated words after our audiologist said them. As he mispronounced words, she made changes to his MAP. This went on for just a few minutes with each ear, with more repeating of words as she went along. The changes were IMMEDIATE. Once he could clearly hear a sound, he could clearly say the sound. There was another audiologist in the room and her face lit up with a combination of shock, surprise and amazement. I wish I had a video of it. It was totally incredible.

She also made some global changes and asked Peas if it sounded good to him. At one point you could see on his face that it was too loud, so she backed off just enough so that it was perfect. Peas' processors can hold four different programs that we can change with a remote. She put the new program in positions 1 and 2 and also gave us another program to use in positions 3 and 4 if we need to. So I can basically MAP him myself at home if this happens again in a few months.

Which begs the question: why does Peas need such frequent programming changes? He is more than three years post activation. Most kids at this point only see their audiologists every six months or even only once a year. I don't have the answer to that question. Normal has never been a word used to describe Peas in this respect. We know that he needs more stimulation. We know that his brain gets accustomed to sound quickly. I learned that even a great MAP has a short shelf life for him.

So despite the fact that my car is almost at the 100,000 mile mark, we will continue to make the trek as much as we need to. Our next appointment will likely be in January. Fine with me.

In the meantime, I am going to listen, watch and take notes judiciously. Never a dull moment around here, that's for sure.

Brilliant

2011-10-25T11:24:00.004-05:00

My fave yoga teacher shared this clever piece of advertising from Yoga Journal magazine last week. Wanted to pass it along because it explains exactly why I love yoga:

There's something about thunder. As a kid it shook our house. And my bones too. My dog and I would seek comfortable shelter under the nearest bed. Together we'd ride out the storm. Ears plugged. Eyes closed. I found it amazing that even with my eyes closed, I could see the lightning inside me. Flashing. Brilliant. And beautiful. I don't hide under the bed anymore. I hide here. This is my comfortable shelter. My cushion from storms. It's my soul mat. And guess what? When I close my eyes I can still see the lightning inside me. Flashing. Brilliant. And beautiful. Practice on.

Critical ear

2011-10-21T07:03:00.006-05:00

Got a much needed wake up call yesterday afternoon.

Peas' preschool teacher mentioned that it is sometimes difficult to understand his speech when he is saying a long sentence. The first part is clear and then end is clear but the middle is muddy. Like many four year olds, Peas loves to say things like:

MommyandthenwewenttotheparkandwelookedforleavesandIgotaredone
andthenthatotherboysteppedinsomewetgrassandhegotallwetand
MommycanIhavesomeicecreamnoooowwww?!?!?

And while this is excellent language, it also shows a need to work on self monitoring. There should be pauses in speech. I can see how it would be difficult for someone to understand what the heck is is talking about if the middle part was mumbled they did not know the context. I always understand him, no matter how much is mixed up, missing or unintelligible because I am his Mom. But everyone should be able to understand a four year old.

Then yesterday we participated in part two of a study on early implantation of kids and how it relates to language learning. We happened to see Peas' AVT and chatted in the hallway. She told me later that she had a difficult time understanding his speech and was surprised at how he souded. She saw a distinct change since the last time she heard him in August.

Hmm...this is not like him at all. I wonder what's going on? Don't panic. Think. Think.

Duh, Mom. He needs a new MAP.

The last time Peas' MAP was tweaked was almost six months ago. That is the longest he has ever gone without a change. He had a solid audiogram in August, but no changes since last May. He is like a light switch when it comes to his programming. He can be perfect on Monday and a mess on Tuesday. His TOD was just in a few weeks ago and said he sounded great. (And she had never met him before that time. We are on TOD number 4 since last school year. This is definitely not ideal, but we work with it.)

So we are making the trek next week to see his audiologist. Yes, she squeezed us in with less than a week notice. She rocks. It is still going to be important for us to work on strategies to teach Peas to slow down and enunciate when he speaks. But I am quite confident that the latest hiccup is due to him not hearing as well as he should. This has happened in the past and it has always been a technology issue, not a Peas issue. I guess I stopped listening to him with a critical ear. Great reminder for me to never let things slide.

The best t shirt EVER.

2011-10-20T15:48:00.001-05:00

Ten on Tuesday

2011-10-18T07:48:00.006-05:00

Random musings from the past week...

1- It is officially Fall here in the midwest. The leaves are still hanging on the trees and they are gorgeous. It is sunny and windy and cool outside. We picked apples, made pies, roasted pumpkin seeds and carved Jack-o-Lanterns. My favorite time of year.

2- The boys have their first field trip of the school year to a local pumpkin farm tomorrow. I am so lucky to be able to stay home with my kids so I can join them on field trips. I never take this for granted because I know how difficult it often is to have both parents working full time.

3- Another fun thing I did this week was help in Mia's classroom. Her teacher is wonderful this year. A perfect combination of structured and sweet and I can already tell that she has high expectations for her students. Every child knew what he or she should be doing during center time. They were all busy little bees and I could tell that every child felt safe and comfortable in the environment. And I discovered that ALL classrooms at her school have soundfields and pass around microphones. This benefits every student. Love!

4-I have been having a hard time commenting on other people's blogs. Have you? What's going on with Blogger? I changed some settings on my blog so hopefully it will be easier to post a comment here, at least. (That means you!)

5- I love Whole Foods. I could spend a disgusting amount of money there. It's a good thing the closest one is more than 20 miles from my house. I have a thing for grocery stores. Crazy, I know.

6- I am sure I am close to the last person to jump on the Parenthood bandwagon, but WOW. What an incredible show. It really captures how it feels to be a modern parent. Each character is so layered and multidimensional. I feel like I can relate to so many of the storylines. Amazing. Set your DVR's. You will not be disappointed.

7- And while I may be an almost 40 year old modern parent, I am still a 13 year old girl at heart. Only one month until the premiere of Breaking Dawn. My husband thinks I am a total nut. Luckily I have another Mom friend who shares my devotion to all things Cullen and is a fellow closeted teenager. When do tickets go on sale anyhow??

8- As I mentioned previously, I went searching for new home phones that Peas will be able to use easily. (He has a built in T coil, but it is my understanding that most kids don't like to use it.) I also investigated some smoke detectors and bed alarms. (He certainly doesn't need a bed alarm yet, but he will eventually) No decisions made yet, it is all still in the works.

9- What is your favorite Halloween candy? Fun size candy bars? Candy corn? Those weird orange circus peanuts? Peanut butter cups? What do you like to hand out to trick-or-treaters in your neighborhood?

10- I found the BEST t shirt for Peas. I will post a picture of him in it tomorrow...

Full Circle

2011-10-16T07:29:00.004-05:00

What a fulfilling day.

It started with the most perfect yoga practice: a steamy studio, warm sunshine pouring in from the windows, and my favorite teacher. Best way to start a Saturday morning.

Later that day, I was part of a panel of three Moms who all have children with hearing loss. The audience was primarily graduate audiology students. The students specifically requested a parent panel so they could get a taste of what it is like for the families they will serve, which I think is incredible! Many of the students were from the AuD program at the University of Wisconsin-Madison. (Go Big Red!) Most have some clinical experience, some were still in the classroom phase of their education.

Before the parents spoke, we got to see a panel of professionals who serve children and adults with hearing loss in the area. They spoke about initial appointments, managing families, how decisions are made for children, and how doctors and therapists work together to serve their mutual clients. It was so interesting to hear their side of the story since my family was part of that process too almost five years ago.

As I listened to them talk, it was almost like an out of body experience. One of the speakers was part of the team of two who came to my home soon after Peas was diagnosed. She spoke to the students about that first home appointment. She mentioned how communication modes are discussed with parents, (most families I know have dubbed it "the chart") and about the choices that parents must make while still in an extremely fragile state. She spoke about how difficult this appointment is for all involved. To hear her talk about something that I actually experienced was surreal to say the least. I almost feel like I am on the other side now too. It is so satisfying.

I had a flashback to something that was said to us at that first meeting that I haven't thought about since: what are your goals for your children? And I quickly remembered how good it felt to hear a professional say it this way. They wanted to know about all three of my children. They weren't solely interested in my deaf child, they were much more interested my FAMILY as a whole. I knew at that exact second that we were in excellent hands.

One of my fellow Moms shared a story during our portion of the presentation about how she felt after her daughter was diagnosed. She was born with a moderate hearing loss, which means she was able, even unaided, to hear some of the speech sounds. This Mom sobbed as she spoke about the heartbreak she felt because her newborn baby was not able to hear her speak, sing and whisper in her ear for those first few months before she was fitted for hearing aids. It was the most powerful moment of the afternoon, in my opinion, and the exact reason why we were there.

My hope is that these soon-to-be-audiologists always remember the look on my friend's face. The sound of her voice. The tears that fell as she so eloquently explained what ALL parents feel when they learn the news that something is not right with their child. It is always going to be emotional for us. Three years later, five years later, even ten years later. It is always going to be emotional for us.

We are the MVP's!

2011-10-10T06:42:00.002-05:00

No, I am not going to blog about sports. Although it sure would be incredible to see the World Series played at beautiful Miller Park, don't you think?!

One of the blogs I read daily is Cochlear Implant Online. It was started by a bilateral cochlear implant user and is always an interesting and informative read. It is not written in scientific jargon so it is a great resource for parents. One of the guest bloggers, Elizabeth Boschini, is currently pursuing her certification as an auditory verbal therapist. You can read about her here. I wanted to share a piece she wrote dated October 9 entitled How to Read an Audiogram.

She totally nailed it with this line:

I often say that becoming a parent of a child with hearing loss is like being drafted onto a team for a sport you've never played and expected to be the MVP.

I couldn't agree more. I can't even hit a baseball, but I was instantly expected to crush one to the back of the stadium like Prince Fielder. I had never heard the words bilateral profound sensorineural hearing loss but I was expected to know all the game terminology by heart. I had to be the star player, team manager and coach all at the same time. Overwhelming doesn't even come close to explaining what it felt like.

It really is no one's fault that parents feel this way. But I imagine reading something like this soon after Peas was diagnosed would have been very helpful to many parents like me.

Self Advocacy

2011-10-05T18:52:00.003-05:00

Now that Peas is 4 1/2, we are really starting to focus on teaching him to advocate for himself in regards to his cochlear implants. (Well, and everything else too!) He is an expert at reporting if his batteries die or if it "sounds funny" to him, which generally means that he needs a new cable. This is so great.

A new change is that we no longer call his CI's his "special ears" and have taught him the correct names for all the parts of his equipment: cochlear implants, coil, cable, processor. He can tell you that he wears CI's because he is deaf and he needs them to listen. He told a new babysitter the other night that he has "computers inside" which cracked me up. My little cyborg. :)

Peas has always been great at asking questions if he misses something. He does not like to be left out! If he hears a word that he doesn't know, he will say "What that means?" and immediately repeat the definition I give him. Smart cookie.

All of this is preparation for him to be more independent when he starts kindergarten in Fall. The more we can teach him now and give him opportunities for practice, the better off he will be.

Wordless Wednesday

2011-10-05T13:47:00.001-05:00

Parent panel

2011-10-04T09:20:00.002-05:00

I was asked to sit on a parent panel at a conference sponsored by WSHA in a few weeks. This conference is for undergraduate and graduate students who are interested in a career as an SLP and/or an audiologist. The graduate audiology students specifically asked for a parent panel so they can learn more about what it is really like for families with a child with hearing loss. I was asked to prepare some thoughts and to answer these questions:

They want to understand more about the emotions surrounding having a deaf/HOH child, life with that child, including interaction with siblings and extended family, important steps in your journey, your thoughts/advice regarding audiologists’ counseling regarding use of hearing instruments, implants, assistive listening, your thoughts regarding audiologist interaction with your child…seriously, anything you think would be helpful for them to know.

I know what I want to say, but our family's experience is certainly not the same as every family. So I wanted to ask my dear blogger friends to chime in.

What would you tell them?

Please leave me a comment or two!

Meeting of the Moms

2011-10-02T07:19:00.003-05:00

I am very lucky to know other Moms in my area with kids who have CI's. Some of us have met through the communication group my boys attended, some through events held by the center where Peas received therapy, and some through the annual picnic held by the local CI clinic.

We met for dinner last Friday night. One of the Moms I had not seen in quite some time. In fact, I think the last time I saw her was shortly after Peas was diagnosed. Her daughter is now nine and attends a mainstream private school with her older sister. Since her Mom chose to send her to a private school, their local district would not purchase an FM system for her to use. (Which is generally the case.) And while it was surely a financial burden for the family, there is something really comforting about being totally in control of the equipment your child will depend on daily. She brings it all home each night. She makes sure the battery is charged. She takes care of all of it. She can use it for soccer games, religious school classes, anything she may need that does not fall into the school parameter.

Since Peas will be attending our public elementary school, his FM will be purchased and maintained by the district and by his teacher. It is my understanding that our district does not allow families to "check out" the equipment for the weekends. What about yours?

The other great thing about us getting together is that our children have totally different experiences, communication modes, and educational needs despite the fact that they have cochlear implants in common. We all learn from eachother and see what works and what doesn't for other kids. And a night out with the girls is always fun too!

Ten on Tuesday...a few hours late

2011-09-21T06:42:00.010-05:00

1. The boys continue to love preschool. They are telling me a lot more about their day then they did last year. Between the two, I feel like I get a good picture of what they are doing. (Twin bonus!) They love their teachers and love eating lunch at school.

2. Second grade is great for Mia so far too. Her teacher asked the parents to write a description of their child last week so that she can get to know them quickly and so the parents can privately share anything they feel would be helpful for her in the classroom. I thought this was great and of course loved talking about my girl.

3. We need new house phones. Our batteries don't hold a charge anymore. We are going to look into getting phones with excellent sound quality so that it will be easier for Peas to use them as he gets older. We have never had a problem with him hearing on the phone, but we have only used it on speaker so far and he is only 4. I will be heading to the UniversaLink store in the next few weeks to see what we should get.

4. Speaking of batteries, Med-El's new D coil is officially on the market in the US and ours will be on order as soon as we can work through the details. This will greatly extend battery life which we are thrilled about. The coil and cable are also much lighter and thinner and the magnets can be easily taken in and out if needed.

5. Only a few more months to wait until my sweet husband and I have a kid free weekend filled with spa services, lovely food I don't have to prepare or clean up, and relaxation. We are going to the beautiful American Club. Divine...I can't wait.

6. The leaves are starting to change here in the midwest. Fall is absolutely my favorite time of year. Jeans and a t shirt with that cool, crisp smell in the air. Love it. My kids are already counting down the days until Halloween. This year we have an interesting costume combo: Darth Vader, Lightning McQueen, and a sparkly green witch; all of which I bought a size too big since it is always freezing cold the night of Trick-or-Treat and we have to wear lots of layers. (I think last year it was 45* that night. Really.)

7. I finally figured out how to use the Tar Heel Reader site. Yay! This is a site where you can make online books with pictures and sound and it is simple to use. Best of all, it is FREE. Experience books, anyone?!? You do need an access code which I finally have and can share. (The web creator doesn't post it anywhere for fear of spammers, but says that it can be shared privately) Leave me a comment with your email and I will pass it along. It is a great resource.

8. A bunch of local Moms I know all with kids with CI's are all getting together next week for dinner. I always look forward to these get togethers. It is fun to hear other people's experiences and brainstorm ideas for problems together. Wish my Ohio, Pennsylvania, California, New Jersey, Maryland and Canada friends (and anyone else I missed) could join us! My treat.

9. I am also pleased to report that it seems like Peas still has a good MAP. That is 4+ months and counting with no changes that I can hear. This makes the long drive so worth it. We couldn't be more thrilled with where he is now.

10. Have a great week, friends!

Preschool

2011-09-15T18:24:00.002-05:00

My sweet boys started preschool last week. They were so excited. Since our school district doesn't offer any K4 program, they are again going to a local private preschool program three mornings a week. (Two are extended and they get to bring a lunch to eat at school.)

They have different teachers this year and so we had a meeting the week before school started to get everyone up to speed on what Peas does and does not need at school. We are so lucky to work with an incredible educational audiologist. I think I remember someone telling me that she has a staggering 71 kids on her caseload as she works with kids all over our area. This fabulous person is not only an expert in assitive technology, she is also an advocate for kids like Peas when dealing with school districts and IEP's. She is not afraid to speak up at meetings, which I love. We are so lucky to have her as part of our team.

So far, all the news is great at school. The boys have been singing songs, playing Duck Duck Goose, playing outside, meeting some new friends, and reading books. Next week they get to listen to a special preschoolers only performance by our high school marching band. Fun!

Hallelujah

2011-09-12T11:50:00.003-05:00

I was looking for something completely unrelated on You Tube the other day and came across this incredible video that I had bookmarked. Wanted to share it in case some of you have not seen it. It never gets old. Moms of boys with big beautiful eyes, get your kleenex ready!

Wordless Wednesday

2011-09-07T14:59:00.002-05:00

Happiness

2011-09-04T06:31:00.002-05:00

Happiness is reading this blog post.

Way to go, Tammy! Your tenacity is finally paying off. We were also told early on that Peas may be apraxic and/or our expectations were just TOO HIGH. We knew in our hearts that was not the case. Other families will learn from Tammy's experience and suspect the technology first before they suspect there is somthing wrong with the child. They will ask their audiologists to think "outside of the booth" to get a good MAP if the other ways don't seem to be working. They will demand that all the members of their child's team all have high expectations for their child. They will trust their gut instincts because another Mom did too.

Five on Tuesday

2011-08-30T15:45:00.003-05:00

It's been busy around here...and I have been neglecting my blog. It's the end of Summer craziness in my world. Only time for five on Tuesday...

1- My sweetie pie Mia celebrated her 7th birthday last weekend. She had 20 of her friends to a local gymnastics place for her party. Everyone had a wonderful time and Mia smiled the entire day. She is a happy little kid. Love that girl.

2- Mia starts 2nd grade this Thursday. How is that even possible?! We have her meet the teacher night tonight and since we live a block from school, she has been watching the school with excited anticipation since yesterday morning when the teacher's cars started to fill the parking lot. She even gets to bring her school supplies and put them into her new desk. (A big deal when you are 7.)

3- I have a meeting tomorrow morning with my boys' new preschool teacher, his new TOD, (yes, another new one) the educational audiologist and the preschool director to get everything in place for the first day next week. (Soundfield, etc.) Funny how I was so stressed about this meeting last year and planned for weeks, and this year I have spent exactly 10 minutes getting ready. I know I don't have to worry because WOW- this preschool is amazing. I have complete confidence in their ability to do whatever Peas (and all the kids, for that matter) need to succeed. It is an amazing place.

4- Reason #789 why I love our new audiologist: I wanted a copy of the report from Peas' last appointment to share at the preschool meeting. Her reports are quite lengthy and generally it takes a few weeks to arrive in the mail. I know this is a busy time of year for her with kids trying to get good MAPs before school starts, but I thought it wouldn't hurt to ask her to put a rush on it. And with less than a week notice, she got it done and faxed it right to me. And then sent a follow up email to be sure it arrived. Love.

5- Got a great compliment today that anyone with kids will appreciate. The lovely lady who watches the children at my gym said "Your kids share really well. It is so nice to see." Yay! I know that they definitely don't share all the time, but it makes you feel like perhaps you are doing something right once in a while when someone says that to you.

The weekend

2011-08-23T08:13:00.005-05:00

We just returned from a wonderful family weekend sponsored by our local center for all things d/hoh related. There was swimming, paddleboating, s'mores, art projects, instrument making, dancing, and two full mornings of kids only programming. There were people from all over the state who used all kinds of communication modes.

While the kids were having fun, the parents were learning and getting to know other families. We even met another blogging family who also has twins! Check out Brennon's story here. Brennon's family is a part of a new long distance Auditory-Verbal therapy program called Connect Hear. This program provides services through webcam and the internet for those who do not have a certified AV therapist in their area. Incredible.

The featured presenter was this amazing music therapist, Christine Barton, who specializes in music for children with hearing loss and children with autism. My CI friends may recognize Christine's name as she is the voice of The Listening Room, a free resource from Advanced Bionics.

I have a TON to share from her presentation, but need a few days to get my notes together. In the meantime, I leave you with some snapshots from our trip.

Yesterday

2011-08-18T08:57:00.003-05:00

Yes, that is a Jedi bear.

Peas had an audiologist appointment yesterday. Have I mentioned enough how much I love our new audiologist? Efficient, confident and concise. Love her!

Yesterday was the first time in 3 years and 1 month that we have had a stable MAP for a three month time period. He walked in at 20-25 db across all frequencies with each ear individually (we tested last May) and yesterday she did testing with both ears together and he was at 15-20 db. Nothing changed, nothing dropped. She also gave him a four year old word list (he is 4 years, 5 months old) and he scored 94% correct. Just for fun, we did the kindergarten word list and he scored 80% correct. Not too shabby, Peas. We don't have to go back for...wait for it...SIX MONTHS. We have never gone that long between appointments.

After the appointment, we went over to the gorgeous and fabulous mall (to even call it a "mall" does not give it any credit. This place is divine) and wandered into Build a Bear. I gave in and got one for Peas. It was worth it because of this conversation:

Employee: Hi! What's your name?

Peas: I'm Noah.

Employee: How old are you, Noah?

Peas: I am four. I have a twin. We are Cameron and Noah.

This is the first time I have ever heard either of the boys talk about their twin-ness. They did fight the other day about who was older (Cameron by 2 minutes) but it was so cute to hear Peas talking to a complete stranger about his other half. Love it.

Eight years

2011-08-16T14:25:00.002-05:00

My sweet husband and I have been married for eight years today. I could ramble on about how wonderful he is, but instead thought I would share what a complete stranger said about him.

Back story--my usually cautious husband accidentally bumped into someone else's car in a parking lot and caused quite a bit of damage. He didn't recognize the car, and I suppose he could have driven away and no one would have ever known. He instead went inside to find out whose car he hit. He paid for the damages and a few weeks later got the following card (and a generous gift certificate) in the mail:

I just wanted to say how heartwarming it was to be witness to your integrity. From coming back to let me know what happened, answering my phone calls, trusting my auto body mechanic, paying the bill as soon as the work was done--you are the real deal. It is wonderful to have people like you in our world.

This is the man I married. I have never meet another person with more integrity in word and in action no matter the situation. He truly is the real deal. We are very lucky.

Small sounds

2011-08-13T06:00:00.006-05:00

It is early on a Saturday morning. I am the only one awake with my first cup of coffee of the day and I can hear owls hooting in my backyard. Bliss.

It got me thinking about how much I have come to appreciate the little sounds that many people may not even notice. I was sure Peas would never hear birds chirping or an owl hooting in the distance. It didn't even bother me because I was so focused on him hearing and producing speech. I thought the little sounds didn't matter for his everyday life anyhow.

I was definitely wrong. Of course the most important sound that Peas can hear is people talking. But watching him hear the small sounds has been a gratifying surprise. Peas loves to point out the sounds of nature wherever we go.

The other day we walked outside early in the morning and heard bugs humming; the most incredible sound that you only hear in late Summer. He immediately said: Mommy, I hear lots of bugs! It stopped me in my tracks because it reminded me of a time that my wise yoga teacher told us you can hear the sound of om everywhere in nature, especially in the Summer. Those bugs were chanting om in my backyard, my little boy heard them, and it absolutely mattered.

Got it!

2011-08-10T18:42:00.002-05:00

Thanks, Tayten's Mom!

Here's the link to the Parents magazine article entitled Music to Her Ears.

Parents magazine article

2011-08-08T14:24:00.003-05:00

I was not able to find a link to the article online, but September's issue of Parents magazine has a wonderful article in it about a four year old with bilateral cochlear implants who uses an auditory-verbal approach. I literally gasped out loud when I saw it. (And her Med-El processors were exciting for Peas to see also!) I loved the article because it explained what CI's are in language that any parent can understand. It was also refreshing to read an article from a mainstream magazine that focused on a deaf child learning to speak. It celebrated what CI's can do for deaf kids when combined with aggressive therapy. It wasn't a sob story about a child that other parents should pity, it was rather an article about a girl and her family and how amazing this technology is. Love. Love. Love!

Speaking of Med-El, the new D coil for the Opus 2 processor system was just approved by the FDA. (It is available in Europe now) This is a new power efficient coil system that will greatly improve battery life. There is no time frame yet for when Peas will get his new coils, but I am hopeful it will be in the next year. Yay!

Mom-to-Mom advice

2011-08-02T06:48:00.002-05:00

There really isn't enough of it when it comes to hearing loss issues, in my opinion. I love when I find a parent who can share a tip or a trick or some insight about life with a child with hearing aids or cochlear implants that I have never thought of before. We parents get a lot of advice from people who send us a bill, but I think it is just important to get advice from people who LIVE it every single day.

Check out the links in grey at the top of this fabulous Mom's blog. This Mom is far and away the most well versed person in all things hearing loss (her son has hearing aids as well as some other issues) I have ever come across who is not a medical professional or a therapist.

Add a caption

2011-07-27T06:42:00.004-05:00

(The look on her face is so "six year old girl", isn't it?)

What do you think happened in this photo? Let's hear it...

Yummy Summer

2011-07-25T15:47:00.007-05:00

One of the Milwaukee Brewers racing sausages with my daughter. (Yes, they have racing sausages.)

Cutie pie boys mid squeeze!

Love my sweetie in her Super Girl cape.

Playing with the color on my camera. Love this shot.

Summer continues to be filled with lots and lots of fun activites for our family. We are still at the pool almost every day because despite the fact that we live in what is generally a cool climate, we are still feeling the heat wave that everyone else is.

All three kids had their first swim lessons of the Summer today (lots of screaming and crying from the boys, hoping tomorrow will be better) and fully intend to stay in the water as much as we possibly can before Fall is upon us.

Yesterday we went to a picnic sponsored by one of our favorite places. The kids played games, hit baseballs, won lots of prizes, ran around the park and ate plenty of ice cream and cupcakes. It was wonderful to see so many of the therapists and staff in particular that we have been so fortunate to work with in the past four years.

Two of these amazing therapists came straight to the park from the AG Bell Symposium in Washington, DC. I, of course, had to pick their brains about what they learned at the conference. We got to talking about this presentation in particular and about the red flags that therapists, audiologists and parents should look for when kids with hearing aids and/or cochlear implants are not performing in the way they would be expected to. Every parent with a child with HA's or CI's should read this powerpoint. My heart sank when I read the list of red flags that a child may be understimulated because Peas showed more than one way back when he was first activated.

Be sure to also read through the section entitled "explanations we heard for poor performance." Very interesting. And, again, we were told more than one of those excuses from more than one professional early on after Peas was activated. (We were once even told: "kids who do AV therapy generally don't do as well at first; they catch up later." I wish I was kidding. We do not work with this professional anymore.)

Mia has another week of camp coming up and she is looking forward to that. We love Summer!

Ten on Tuesday

2011-07-19T06:35:00.005-05:00

1- Mia had her first day of camp wearing her cast yesterday. No problems, no complaints. I am so glad it is waterproof; especially since this week is going to be one of the hottest on record. (Air temp in the 90's with heat index of 110.) Lots of time in the lake for my little camper.

2- Speaking of hot, I will be taking the boys to the pool this morning for tot swim. Our community pool has a special ages 6 and under swim time twice a day during the week. It is so quiet and peaceful and I don't have to worry about a gaggle of 8 year old boys running over my kids. Swim lessons for all three kids start next week.

3- I took my very big time yoga workshop last Saturday. I was a nervous wreck but did surprisingly well. I regularly practice Vinyasa style yoga, and this was my first introduction to Anusara. It was great, but my almost 40 year old body was hurting the next day.

4- We were just looking at the calendar and it is FULL. We have something planned every weekend from now until the end of Summer. We have picnics, a wedding, a few baseball games, Mia's 7th birthday, and lots more. I wish we could bottle some of this fun for Winter when we are stuck inside with nothing to do.

5- Can you believe all the stores are already advertising Back to School sales? We don't start here until September 1. Is anyone really buying that stuff in July?

6- One of the things we have on our calendar is Peas' next audiology appointment. I feel like things are pretty stable right now, but I wanted him to be checked before school starts up again. We also need to start training him to move up to a personal FM for when he starts Kindergarten in 2012. (This is a microphone that the teacher wears that goes directly into his CI's. Right now he has a big speaker in the room called a Soundfield.) I think he is getting closer to being ready. He tells me when his battery dies (Mommy! My ear is blinking!) and he puts his coils back on his head himself. I think once he has some practice, he will learn the new system quickly.

7- I am so happy that I blog. It makes me feel connected to other people who GET IT. I was just telling a friend how grateful I am to have found blogs like this one, for example. I remember even before Peas was activated that I used to watch videos of these two adorable little firecrackers and just listen in amazement at their speech.

8- My kids are obsessed with s'mores. We make them in the microwave when we don't feel like starting the firepit and they are almost as good as the originals. Yum.

9- My sweet and handsome husband is taking vacation next week. I am so, so excited to have him home all day every day. No plans, just enjoying the Summer. And the opportunity to go to the grocery store by myself. It's the little things, right?

10- My Mom has been living the artist's life in Mexico for the past six weeks and she comes home tomorrow. Everyone is SO excited to see Nannie, especially Mia. Mia emails her almost every day and her writing is hilarious. She writes exactly as she speaks (she is only 6, after all) and some of the things she says crack me up. I will have to post a few...

The Lake

2011-07-15T06:34:00.003-05:00

We are so lucky to live very close to the shores of Lake Michigan. I feel like we don't take advantage of it enough. And while you definitely don't want to swim in it, the lake is really beautiful this time of year. I took the kids to an amazing park yesterday and for a picnic lunch right on the lake. I am trying to burn these images in my mind for when the lake is frozen solid and has a foot of snow on top of it...

On the bright side...

2011-07-10T06:28:00.006-05:00

With her temporary cast at the hospital. Not happy.

Happy girl with her purple waterproof cast.

We had an interesting couple of days around here. Not the good kind of interesting, unfortunately.

Mia somehow fell off of her bed and landed directly on her wrist after a long day of camp on Thursday. She woke up Friday morning after a horrible night and we decided to take her to the hospital. Cam was off to dinosaur camp, so Peas came along for the ride.

Mia was a trooper. She was overtired, in pain, and likely a little nervous about the whole situation, but you wouldn't know it. The diagnosis was a fractured radius. It will take just 3-8 weeks to heal because kids still have soft bones, apparently. She did great and luckily was able to get a fully waterproof cast so she can still swim! Yay! She can also still go to the remaining weeks of camp and modify her activities if needed. Such a relief.

Peas was a trooper too. I made sure my phone was charged in case things got really ugly and I had to amuse him with Angry Birds, but it didn't even get to that point. The best part? He learned a ton of new vocabulary in the four hours we were at the hospital and then the orthopedist's office: fracture, radius, broken bone, cast, set, waterproof, xray, emergency room, and bone doctor.

Would it be overkill to make an experience book? ;)

Summer = Camp

2011-07-07T06:39:00.004-05:00

I was lucky enough to spend many long and incredible Summers at camp when we were kids. Now that I am a parent, I realize what a gift it was for my brother and I to be able to live here for up to eight weeks at a time. (Wait a minute...my parents had no kids at home for eight weeks!??)

Now that Mia is almost seven, she has quite a few camp options open to her. No overnights yet, but she has started her very first all day camp through Girl Scouts. I was a little apprehensive about sending her on a bus to somewhere I have never been with counselors I don't know, but my fears were put to rest after she got off that bus that first afternoon with the BIGGEST smile ever. She is a born camper like her Mom (and uncle) and loved it. Yay!

Even my boys are getting in on the action. Our local museum runs two hour mini camps that they are going to one at a time with their Grammy throughout the Summer. Yesterday it was Peas' turn. The theme was the Solar System. He sat and listened to the teacher, watched the IMAX movie, did all of the projects, learned about the planets and made projects with the other kids. He came home talking about how Mars is red, Jupiter is fast, and that we live on the planet "Earf." No accomodations, no special anything. Amazing. Tomorrow Cameron will go to dinosaur camp.

So in our house at least, Summer means camp with no limits. Love.

Photo overload

2011-07-05T18:30:00.003-05:00

Mia and her bestie after dancing in the 4th of July parade.

A little pre-parade primping! Her very first real manicure.

Late night at the pool.

Peas at the beach.

Three years

2011-07-03T07:05:00.002-05:00

Three years ago today, Peas received his first cochlear implant processor. It was technically also the first day that Peas ever heard sound. However, it is not the day we celebrate his hearing birthday. (That day is October 8) Needless to say, July 3 used to be bittersweet for me.

But now, this date has become a reminder of how thankful I am to be part of a group of dedicated Moms who also have kids with CI's. Even though I have not met most of them, I still call them my friends. Hearing their stories, their child's milestones, struggles and anecdotes pushed me to question what was going on with my own child. I knew that something was not right during the first few months after activation (as did our therapists) but reading what others experienced first hand with their own children was really what made me sure that things were awry with mine.

So, thank you, blogger Mamas. Thank you for keeping my expectations HIGH. Thank you for posting videos, word lists, and speaking from your heart. I will be forever grateful.

Manic Monday

2011-06-27T16:57:00.004-05:00

Peas with a mouthful of freshly picked strawberries

Mia showing off her strawberry

We love the POOL

Cam isn't sure about the lobster...

I put 75 miles on my car this morning.

Took Cameron to play at my parents' house, then took Mia to playground camp, then took Peas for an AVT check up. Yes, he officially graduated from AVT in January, but I just wanted to be sure that everything was still on track. (We've seen our new audiologist twice since that time and his TOD has observed him monthly at preschool, just no direct therapy services.)

As soon as we entered the therapy room, Peas stopped talking and started whispering. This is very typical for him when he knows he is on the spot and it really used to upset me. I used to think Peas had to "perform" for his therapist and show her everything he can do. Maybe it's because he did nothing for so long. Maybe it's because I wanted every session to be perfect. (Ha!) I now realize that it's not about how he does in that hour, it is about teaching me what to do with him the rest of the day. He warmed up after a few minutes and it was an excellent session.

But more importantly, I left with lots of things to work on with him at home. (Synonyms, compound words, and rhyming for example) I think I was just going through AV withdrawl and needed my fix. Maybe because I was a hamster on a wheel for so long trying to teach Peas to listen and speak. Always working on something specific. Everything we did at home was a language activity. Always focused so hard on the next step, the next word, the next phrase, the next sentence. This was my life every single day for years. It is odd to not really have that pressure anymore. It feels...refreshing.

On that note, I leave with some pictures of my three adorable kids. It is nice to be able to just enjoy them for a change.

Favorite Summer places

2011-06-19T06:54:00.003-05:00

The pool

The zoo

The two places my kids love the most. Being a parent is so much easier when the weather is nice, don't you think?

What places do your kids enjoy in the Summer?

Ten on Tuesday

2011-06-14T20:24:00.002-05:00

1- Look at my sweet, happy girl. Love that face.

2- Summer is in full swing. The weather is nice and still cool enough to be outside all day. We are hanging out at the park in between running Mia around to all of her activities.

3- Since Peas "graduated" from AVT last January, he has not had any formal sessions with any therapist. He is observed monthly at preschool by our district's TOD, but I feel like he could use a quick once over from the therapist who knows him best. We are going in for a session in a few weeks. Just want to be sure we are still on the right track. Sometimes I hear other kids his age speaking and I feel like he is still light years behind. Who knows.

4- I am sure I am late to the party, but I recently discovered the amazing voice of Adele. Her new cd, 21, has been the only music in my ears for the past few weeks. The entire thing is incredible. Just wow.

5- We just signed up to go to a great camping weekend called Family Learning Vacation through the center we have worked with since Peas was diagnosed. Families from all over our area who use a variety of communication modes will be there. Each family gets their own cabin (complete with A/C and showers. No roughing it for me) and there are activities for all ages. We are very much looking forward to it! You can read more about this incredible place here: http://www.cchdwi.org

6- I need some suggestions for something to read. I'm finally back in the swing of reading a lot and I am always open to new things. Thoughts?

7- My husband was able to get his hands on some free tickets to see Tim McGraw in concert next week. What a fun date night that will be. I have seen him live before and he puts on a really fun show. And he's not too bad to look at either...

8- I love that it is light out until after 9 pm this time of year. I love even more that my kids will still go to bed at 7:30...even my almost 7 year old. They are still at that age where the earlier they go to bed, the better they sleep. We tried to keep them up until 9 the other night and both boys were all up at random times throughout the night as well as a full hour earlier than normal the next day.

9- I love grilling. It is so nice to leave my oven off every night. It just tastes like Summer. And my husband makes a mean mojito to go with it. Lots and lots of mint. Which reminds me...

10- There are a few green sprouts popping up out of the mini garden we planted. Hopefully we will have mint, basil, parsley, and all sorts of other yummy things coming up in a few months. The kids are super excited. Yay, Summer!

Wordless Wednesday

2011-06-08T13:17:00.002-05:00

Ten on Tuesday

2011-06-07T05:53:00.004-05:00

1- The Aloksak bag is my new favorite invention. It is going to completely change my Summer. Really.

2- This is Mia's last week of first grade. She is a bit sad because she loves school and is already planning what "work" she is going to do this Summer. (She loves those Brain Quest workbooks and plows through them all Summer. I need to document this for when she fights me to do homework in a few years.) She is looking more and more like a big girl and less like a little kid lately. She can pick up just about anything and read it with fluency and comprehension. It is incredible. I am very proud of her!

3- Warm weather= we are finally outside almost every day! Which in our case, generally means more sleeping in for my boys. (It is almost 6 am now and no one is up yet. This is a rarity.) Yay!

4- I am super excited to meet up with some of my communication group friends and their sweetie pie girls in a few weeks. You can read about one of them here: http://kenandcynthia.blogspot.com/ It is so refreshing to be friends with Moms who also have kiddos with "special ears." They just get it.

5- I finally joined a local gym that has a great childcare area. The boys love going there. It's one of those little things that makes me appreciate how well Peas can listen and speak. He ran right into the room the first day and I didn't worry for a second that he wouldn't be able to communicate with the staff or the other kids. In fact, the first day he was there, one of the sweet ladies said to me: "Wow! Noah is really good at Go Fish!" Love.

6- Had coffee with a former colleague (and very close friend) a few weeks ago. We haven't seen each other in almost ten years. A lot has happened in those years: I got married, bought a house, had three children, quit teaching-- the list goes on and on. While we were catching up, he asked me a question that no one has ever asked me before in regards to Peas. It was something like how long did it take you to be ok with the fact that Noah is deaf? I have never really thought about it that way before but my answer was immediately clear: it was the day Peas completed AV therapy. It may have taken almost four years, but I think I am finally ok. Thank you, my sweet friend, for asking such a great question.

7- Cameron is 100% his Father's child. We have been out in the sun for exactly one week and despite my incessant slatherings of SFP 30, his skin is already brown. My little Croatian babe. :)

8- Mia asked me the other day: Mommy, when is the fourth of July? She didn't make the connection that the holiday is on the 4th day of July. She just thought that was the name of the day. Ha! She is still six after all....

9- 6:20...Peas is awake.

10- I love reading everyone else's Ten on Tuesday posts. Have a great week, all.

A weekend of firsts

2011-05-30T19:13:00.008-05:00

The first great pic of my three with my sweetie pie niece.

The first parade of the season.

The first mud fest of 2011.

Peas is ALL BOY. (You should have seen the bath water a few hours later!)

We had a great weekend. Last week we had two days of 45 and rainy, today we had 85 and sunny. Such is life in the midwest. Today was glorious. I planted my two big pots in the front of my house with Mia's flower selection choice expertise: we did red, orange and white flowers with my favorite climbing vines mixed in.

We also planted a variety of herbs and some carrots because Peas has been asking since we read The Carrot Seed over a year ago. I put up some bunny-proof (I hope) wire around the areas where we planted the goodies in hopes of actually having a harvest this year. Keeping our fingers crossed that it doesn't get eaten and that we don't have another frost coming our way. (Totally possible)

Our little small town within a big metro area has so much to do in the Summer. The boys especially love all of the parades. Our Fourth of July parade is incredible and more than two hours long. Firetrucks, police cars, motorcycles, bands, everything that is REALLY LOUD and fun. Today's parade was much smaller but my kids love it just the same. Parades are very emotional for me. The joyful sounds of a parade were something that I once thought Peas wouldn't be able to appreciate. So watching him hear, recognize, mimic and enjoy all of it makes me cry every time. Love.

Wordless Wednesday

2011-05-24T17:28:00.003-05:00

The fire station

2011-05-18T07:05:00.002-05:00

Pardon the not-so-wonderful pics from my phone

The boys had the BEST preschool field trip last week to our local fire station. They got a tour, a complete explanation and demonstration of all of the fireman's gear, and they even got to go into a real ambulance and a real fire truck. It was totally amazing. Cameron was incredibly excited in particular because he is just a bit obsessed with all things transportation. It was cute to watch.

As I was sitting there watching my big boys listen so closely to every word, I was struck at just how normal it all was. Peas answered questions just like all the other kids. He heard the smoke detector beeping just like all the other kids. He learned what an oxygen mask is just like all the other kids. I was looking around and was amazed at how far we have come in such a short time. I don't think moments like that one will ever get old for me. I am so grateful.

I did it

2011-05-15T06:08:00.004-05:00

I am going to try the Aloksak trick so that Peas can wear one of his implants while in the swimming pool. (For a detailed description of how this and the two other methods work, see this post by Ava's Mom: http://fortheloveofava.blogspot.com/2011/03/march-break-fun.html

I am really excited to try it out because we have a huge community pool that we love, but it is really difficult when one of my kids can't hear me or anyone else while we are there. It is very stressful. He is also taking his very first formal swimming lessons this Summer and it sure would be nice for him to be able to hear his teacher. Yes, I know this is a risky move. But I am confident that it will be worth it. (We will use one of his backup CI's.) I showed him some pictures of other kids wearing the swim caps and explained that he was going to be able to wear one of his "special ears" at the pool. His face lit up.

Now all we need is some warm weather...

Appointment

2011-05-11T06:33:00.003-05:00

(With apologies to the Master Card commercial)

A 210 mile drive...
$4.09 per gallon of gas...
Five hours in the car for a 60 minute appointment...
An entire day off of work for my husband...
A long day for Peas...

A mapping appointment with an audiologist who is confident, precise and skilled, who treats parents like an equal part of the team, and knows how to program my child the way he needs to be programmed: PRICELESS.

We had a great morning at our new clinic. Peas was a rockstar in the booth and did a great job with speech perception tests as well. He scored 80% accuracy on the test for four year olds which was a huge improvement from the testing she did with us in January. Not bad for a kid who has only been four for two months and has only been hearing for less than three. She even did some words when we were out of the booth in the hopes of tweaking his MAP even further for the sounds that he was missing.

The hope is that we will finally get a stable MAP for Peas that he won't "grow out" of in the span of 3-6 months. We have yet to accomplish this after almost three years of trying. We will see her again in August before school starts up again.

This was not an easy decision for us to make. There were things that we really liked about our previous clinic. But, after today, I am 100% confident that this was the right move for Peas. Yay!

Things they say lately

2011-05-05T15:13:00.004-05:00

Cameron: You get what you get and you don't get upset. (Other Moms will understand the power of this statement. Guess he's been listening.)

Peas: That is awesome! How cool! (I love it when he picks up incidental language like this.)

Peas: I miss my Mia! (They both start asking for her at 2 pm every day.)

Cameron: Noah, will you be my best friend? (He said this the other day and it was cute for exactly two minutes until they were on top of each other fighting.)

Peas: Mommy, that's not schmutz. It's something else.

Five on Tuesday

2011-05-03T07:04:00.009-05:00

(No time for ten today!)

1. How is it possible that May is here? It snuck up on me since we're still in long sleeves, long pants and jackets! The boys only have a few weeks left of school and Mia has just over a month. That saying is true: the days are long but the years are fast. Mia is signed up for all sorts of fun camps and activities this Summer. She is so used to routine that if she is just hanging out at home she is bored. The boys and I will be spending lots of time at the park. And maybe the pool...

2. Aah, the pool. I was always a water kid. I went to day camp and then overnight camp every single Summer of my life. Mia is already a strong swimmer. Peas is absolutely part fish. He has ZERO fear. It's almost scary, actually. Cam loves the water too. The plan is to have the boys take their first formal swimming lessons this Summer. BUT it still bugs me that Peas can't hear in the water. I have been tossing around the idea of doing the Aloksak bag trick. Honestly, my biggest fear is not that the bag will get wet, it is that Peas will get mad about something (which happens often) and rip the entire cap off and throw it and the bag with his $7,000 processor in it into the pool. Maybe next Summer...

3. Our IEP states that the only intervention Peas gets at this time (except for his soundfield) is a monthly 30-40 minute observation at the preschool by our TOD. She has done an excellent job of detailing what she sees during her visits. Peas still needs to work on not mumbling his words together when he gets excited or is saying a long sentence or is in conversation with someone. Do your kids do that too? But in general, she has found that the majority of his speech is very clear and that his articulation is also very clear. Yay! She is going to plan her last visit for right after his next audiologist appointment to see if there are any more changes.

4. I know it's more than a year away, but I am starting to panic about Kindergarten. I have seen what K5 is like in our district (this is a good thing!) and I worry sometimes that Peas won't be ready. Just want to stay on top of my game, I guess. Sometimes I panic when I read things like this: There is one prekindergarten skill that matters above all others, because it is the prime predictor of school success or failure: the child's vocabulary upon entering school...the child who has the largest vocabulary will understand the most, while the child with the smallest vocabulary will grasp the least. (from The Read Aloud Handbook by Jim Trelease) I just want to give both my boys as much input as possible which is why we read read read all day long.

5. This week is National Teacher Appreciation week. Don't forget to thank your children's teachers for all the hard work and dedication they put into their work. We love our teachers!

Heaven

2011-04-27T14:53:00.003-05:00

I was lucky enough to escape the coldest Spring in 15 years and run off to visit my friend in Hilton Head, SC last week. It was unbelievable. The best four days I have had in forever. Check it out:

Savannah=love

Sun.

Palm trees...

Ocean and blue sky...

Nothing much to report here. The boys were thrilled to get back to school yesterday after time off for Spring (Winter?) Break. Hard to believe the school year is almost over for all three kiddos. They have learned and grown so much since September.

I missed Ten on Tuesday!

2011-04-13T07:20:00.005-05:00

(It's not like me to be late.)

1- I feel like all I do is talk/complain about the weather, but wahooo! It is finally (at least temporarily) Spring so I promise that I am done complaining. We have been spending every second at the park and it feels amazing. I can almost feel the Vitamin D soaking into our Winter weary skin.

2- I have been shooting all sorts of videos lately...but I can't get them to load to You Tube or even to my computer. The boys have really stepped up their imaginitive play lately and I have managed to catch a few cute moments. Help, iPhone users!

3- Peas and Cam were playing restaurant at the park the other day and Peas ordered a "chocolate chip sperm whale" and I almost fell over. A combination of his favorite things: chocolate and ocean animals. Too cute. He has also declared that he would like shark sandals for Summer. Think Zappos has those?!?

4- Spring Break starts next week for all three kids. I will be gone for a few of those days next week thanks to some shared frequent flyer miles, helpful grandparents and my amazing husband. I am so, so looking forward to a little getaway. The agenda: hang out with my best friend and do absolutely nothing. Bliss.

5- The boys have music class at their preschool once a month. This week they got to try hand bells. Can you imagine all 14 of them with hand bells? What a racket that must have been. They are still loving every minute of school.

6- New Glee on Tuesday...yes, I look forward to the little things.

7- How many loads of laundry do you do in your house every day? I feel like all I do is laundry. If I miss a day, we have issues. And with Summer coming, I see lots of midday outfit changes at least for the boys.

8- I am crossing my fingers that my blogger friend with family in my area is going to head here in the near future. Come on, girl! Can't wait to meet you.

9- What are you planting this year? It is generally not warm enough here until at least June 1 but I like to start thinking. I have two HUGE planters on the side of my house that I like to fill with flowers. I am not a gardener; I just generally plant what looks bright and colorful. Ideas?

10- Peas has his next audiogram scheduled for early May. Really hoping to get something aggressive enough that we won't have to trek back and forth every three months anymore. I can tell that the right side needs tweaking already and we were just there in January. It is so frustrating that we still don't have a stable MAP after more than 2.5 years. Keep your fingers crossed.

Flashback Friday

2011-04-08T07:47:00.002-05:00

Mia- one week before her third birthday. Carrying a purse but no pants!

Now what?

2011-04-07T10:43:00.007-05:00

I've been thinking a lot about parents with newly diagnosed children and things I wished I would have known during those first few weeks and months after hearing the news that there was something wrong with baby Peas.

I am certainly not an expert. I am just a Mom who is a few years into this crazy journey. So, here's my advice for you newbies:

1. Understand that it's not your fault. The sip of wine you had before you knew you were pregnant didn't cause your child's hearing loss. People will try to make you feel better by saying things like "oh, it could be worse" and you will want to smack them. It's perfectly normal to feel a sense of loss, grief and sadness.

2. Get a second opinion. I did not follow this advice (until recently) but now I understand that I probably should have. You won't offend anyone, I promise.

3. Get some regular exercise. You may develop insomnia from worry--exercise will help you sleep. Find a yoga studio. Go for a walk. Take up boxing. Do something physical. You will feel better if you do. Your relationships will be healthier if you do.

4. Find a good team of audiologists and therapists and then listen to your gut. Yes, they are the experts, but YOU are the one who knows your child best. Read the blogs. Read as many books and articles as you can get your hands on. Join any group you can. Find other families to talk to in your area. Connect with people who GET it.

5. Prepare to work harder than you have ever worked for longer than you think you can possibly manage. Teaching your child to listen and speak is a marathon, not a sprint. It is not an easy thing to do. You have to be flexible AND consistent. Gentle AND strong. You will need to find patience despite feeling like you are banging your head into a brick wall. Your child will not always have great therapy sessions. He may not progress as quickly as other kids. He will rip off his aids/CI's. You may want to crawl under a rock. Things will go wrong. But...

6. One day, your life will feel normal again. It will never be the normal you pictured in your head before you had to deal with having a child with hearing loss, it will be a new normal. And it will feel good.

Funny boy comments

2011-04-07T08:10:00.001-05:00

Cameron: "No, Mommy. That's a Kentrosaurus."

Peas: "Mommy, there's schmutz on my paper!"

Peas: "Sharks have bones. People have bones. Whales have bones."

Soggy Sunday

2011-04-03T18:15:00.006-05:00

Random happenings post:

It hailed today. Yes, in April. And it stormed. And then it was sunny. Now it's just grey and freezing cold. We are still in Winter jackets but have officially sworn off boots, hats and mittens because we can't take it anymore. Spring *will* arrive here in the Arctic eventually, right?

My boys are really good at sharing. (Not all the time, of course. They fight lots too) But I noticed even when they were really little (less than 2) that they developed their own little twin bartering system. They did it before either one of them could talk. Amazing. I have also noticed that many other children their age never share. They grab, scream, cry and push. Especially at the train table at our local bookstores. And their Moms just sit there and say nothing. I just don't get it.

Mia's two front teeth finally came in after many, many months of a big gaping hole. She looks so old all of a sudden with her new mouth. No more baby face.

Peas is still mixing up the /n/ and /m/ sounds on some words. Developmentally appropriate or a mapping issue? Not exactly sure. BUT I am happy to report that his /r/ sound is amazing. Perfect, even.

So...what's new with you?

Visit #1

2011-03-28T20:16:00.003-05:00

We met the surgeon from our new CI clinic today. (Just a formality, hopefully no surgery will be needed anytime soon!) It was pretty quick. She asked a few basic questions, typed away at her computer, and decided that she would take a second look at Peas' CT scan that was taken before he was implanted.

There was some discussion at the time on whether or not he has LVAS or just larger than normal vestibular aqueducts. We assume that this is the reason for his hearing loss, but we are not sure. He has never presented with any of the classic "symptoms" of LVAS.

We also talked about genetics a bit. She told us that there will be a new test on the market in a year that scans for most of the known genetic causes for hearing loss. (The tests out now don't cover as many.) So, the plan is to wait until that test is available and go from there. It seems now that the time may be right to at least attempt to see if we can find a cause and perhaps to see if my other children may be carriers of a gene. No rush, we'll see.

She also had lovely things to say about our (former) AV therapist. Nothing we didn't already know, of course, but definitely validating for us.

Wordless Wednesday

2011-03-23T08:24:00.004-05:00

Mia in Warrior 2 pose

Bonding 2011 style

2011-03-22T16:12:00.005-05:00

My beloved cuties with my beloved phone. At least they're not fighting...

No Ten on Tuesday post for me today. Got some bad news from another blogger friend and I just can't think of anything clever to write about when I know that her family has just been turned upside down.

But it has got me thinking about genetic testing. We have yet to find out the etiology of Peas' hearing loss. We are quite sure that he doesn't have a syndrome and he is developing normally in every other way--so we really never saw a need to know. We assume that it is either a connexin mutation or something similar. (Like most hearing parents of deaf kids, there is no history of hearing loss in either of our families.)

Do you know the cause of your child's hearing loss?

Does it matter?

Thankful

2011-03-18T07:40:00.004-05:00

Like most people my age, I have just a small handful of really close friends. I do have acquaintances from other circles of my life: the school Moms, my fellow yogis, my small circle of local CI Moms, and so on. But the friendships that really matter most to me are the ones I have had forever.

Except for college, I have lived in the same area all of my life. Consequently, there are people that I still talk to who I have known for literally 30 years. This is an amazing thing because there is never a need to explain any backstory, they just get it and they get you. And they even still like you!

Yesterday I was on the phone with one of these friends. We have known each other since we were 12. There have been few weeks that have gone by in the past almost 20 years that we haven't talked despite the fact that we haven't lived in the same city (or even country) for most of that time. I was trying to explain why we are switching CI clinics. I was almost dreading the conversation because of the barrage of questions most people ask me when I make this announcement. But, of course, no explanation or justification was needed. This friend knows me well enough to understand my reasons with just a sentence or two. No questions asked--just full confidence in my decision. It felt amazing.

So, to my dear friend, here is your sort of public thank you. Thank you for always, always knowing what to say and do no matter the situation.

Before

2011-03-17T06:33:00.004-05:00

I have been sorting through some old paperwork to get things together for our new clinic visit and came across this.

Yuck.

This would be one of the dreaded unaided audiograms that are required during the CI evaluation process. I remember sitting in the booth with him for these and thinking that this has got to be one of the worst parts of the whole process. There it is in black and white: my child can't hear anything. Nothing. 120 dB is louder than front row at a Metallica concert.

It still stings a little.

Ten on Tuesday

2011-03-15T13:33:00.002-05:00

1. This was the view as I walked into my beloved yoga studio last night. It *almost* looked like a summer sunset.

2. It is Peas' turn to be Star of the Week at preschool. The kids bring a poster with pictures on it to share with the class and I was asked to draw a sperm whale and a giant squid on his poster. Can you tell he is interested in the ocean??

3. I am ready for Spring. What good is an extra hour of daylight when it is still too cold to be outside? Come on, 50 degrees!

4. My car died. It is being fixed, thankfully. It has been a tight squeeze for my three in the back of my husband's not-at-all-family-friendly car this week.

5. I think I have finally signed every single piece of paper to make our CI clinic transfer happen. It's not enough to tell Audi A that she can talk to Audi B...I have to also tell Audi B that she can talk to Audi A. Does this make sense to anyone?? Me neither.

6. Does anyone know a CI kiddo who uses an iPad to facilitate communication? I have a friend whose son could likely benefit from this technology and is looking to connect with someone.

7. We are taking the kids to one of those water park hotel resort places this weekend. Our first family mini vacation ever. Hoping for a fun time.

8. What are your kids doing this Summer? Mia is going to a few camps but I have nothing planned yet for the boys. They are done with school just before Memorial Day---so I need to get something in the works. We will go to the park and the zoo, but it would be great to have something else...

9. It still amazes me every time Peas says "What's that sound??" I am not sure that will ever get old. He notices every sound. Today it was the birds as we walked home from preschool. Amazing.

10. I know I have said it before, but Mia is the best language model for her little brothers. She can be so sweet with them and teaches them so much new language. (My newest fave is: "Awww, man!!") They are so lucky to have her!

Four

2011-03-09T07:46:00.000-06:00

Ten on Tuesday

2011-03-08T14:24:00.005-06:00

It seems I only blog on Tuesdays lately:

1- Somehow, tomorrow is my little boys' fourth birthday. I am not sure how it is possible they are going to be four because I feel like it was just yesterday that my doctor said: "Well, I'm not an ultrasound tech, but I have been doing this for more than 20 years and I think I see TWO." (My immediate response is not suitable for print as this is a family blog.)

2- On the other hand, it has been a long four years. Most definitely the craziest of my life to date!

3- We had their birthday party last weekend complete with two cakes: one with a shark and one with a cow. They were both totally thrilled.

4- I have decided that I am officially done wearing my big, thick, long winter coat as of today. Nevermind that we still likely have at least a month left of Winter and plenty of snow on the ground. I simply can't take it anymore.

5- The boys start their first official gymnastics class this Monday. It is at our local studio and it's just for four year olds. 50 minutes, once a week. I am excited to watch them learn and excited for them to burn off some of their abundant energy.

6- I finally caved and bought a really, really great yoga mat. It makes me blissfully happy.

7- We are officially switching CI clinics. We found one that is a much better fit. I want to remain diplomatic, so I will leave it at that. It was absolutely the right decision for our family and we are so, so excited to work with our new team.

8- I am addicted to watching old Sex and the City episodes. We are now in the Petrovsky era. Love.

9- Did you know that you can use an old Cochlear snug fit (kind of looks like a Huggie but it's not round) on Med-El processors? Well, you can.

10- Cameron is the Star of the Week at preschool this week. We made a poster with lots of pictures on it for him to share with his class. He was so excited and proud this morning as he showed it to his teachers. Super cute.

Ten questions for Mia

2011-03-01T08:17:00.003-06:00

1. How old are you? I am six and a half.

2. Tell me about your family. I have a Mom and Dad and two little brothers who are annoying. What are their names? Cameron and Noah...and Noah is deaf. (She knows about this blog--so I am sure she added this on purpose)

3. What does that mean? It means when you're born you can't hear so they take you to the hospital and they give you testing for your hearing. So Noah got hearing aids but now he has cochlear implants.

4. What is your favorite sport? Well, I have lots of sports I like to watch: ballet on The Nutcracker, and I like to watch football and hockey. What's your favorite football team? Pittsburgh Steelers!

5. What do you like about Cameron? I'm glad that he likes Thomas (the train) because I like Thomas too.

6. What do you like about Noah? He likes to play with me on the computer and play bouncy balls with me too. And hide and seek.

7. What do you like about school? We have lots of reading time in the morning. And we write in our notebooks about what we did on the weekend sometimes.

8. What music do you like? I like The Nutcracker one---the Sugar Plum Fairy dance. And I like Candy Canes and I like Pierrot and Pierotte.

9. What are you good at? There's a lot!! Well, I like to build snowmen with my little brothers and my Mom. And we like to jump in piles of leaves and once I threw up in the leaves.

10. Anything else you'd like to share? I like to dance to Selena Gomez in the morning before school and after school. And I like to run around and scream with my boys. And I like doing my homework and reading my textbook. And I like to work at my desk in my room. And I like...mmm...drawing pictures and copying from the computer. One more thing! And I like to go to my Grandma's art studio and paint all kinds of art stuff and once we went to this market place and we had lunch there and for dessert we had taffy. It's really good taffy!

Thanks, Mia! You're welcome, Mommy.

What keeps me going...

2011-02-24T14:04:00.003-06:00

There is one prekindergarten skill that matters above all others, because it is the prime predictor of school success or failure: the child's vocabulary upon entering school. Yes, the child goes to school to learn new words, but the words he or she already knows determine how much of what the teacher says will be understood. And since most instruction for the first four years of school is oral, the child who has the largest vocabulary will understand the most, while the child with the smallest vocabulary will grasp the least.

-Jim Trelease, The Read Aloud Handbook

Ten on Tuesday

2011-02-22T14:28:00.004-06:00

Ten things about my Peas. (Noah)

1- Peas is my youngest and fits that stereotype perfectly. (He is a whole two minutes younger than Cameron)

2- He also has the most gorgeous brown eyes. They are so dark that you can barely distinguish his pupils.

3- He loves anything new. If it's novel, he is interested. Makes life challenging sometimes.

4- His favorite book right now is Bye Bye, Big Bad Bullybug but he loves to read anything and everything.

5- He loves broccoli....and chocolate.

6- He absolulely is my snuggler. He will bring his bunny over to me and say "Mommy...we want to smuggle with you."

7- He can get very frustrated very easily. He is emotional and dramatic.

8- He can read people's emotions immediately. If you are not genuine, he can feel it. He has always had a knack for this--even as a baby.

9- He is a hard worker with a great attention span.

10- He is positively the sweetest little boy on Earth.

Wordless Wednesday

2011-02-16T14:23:00.000-06:00

Ten on Tuesday

2011-02-15T11:41:00.003-06:00

Ten fun facts about my sweet Cameron...

1. He is the spitting image of his Daddy in looks and temperament...except he got my curly hair. You could even tell that he had his Daddy's lips in my ultrasounds.

2. He is the most independent of my three kids. He will happily play in the playroom by himself and have a great time.

3. He is a light sleeper with an early wake time.

4. He is also a master at puzzles and building train tracks.

5. His favorite food is strawberries. He eats them at almost every meal.

6. His first word was OVAL.

7. He is in love with his baby cousin. He makes googly eyes at her and rubs her hair. So, so cute.

8. He counts down the minutes until his Daddy gets home from work and is the first to greet him at the door.

9. He can write his name all by himself.

10. He has huge brown eyes with long, beautiful eyelashes. He will be a heartbreaker in a few years, I am sure!

Flour Face

2011-02-13T15:19:00.003-06:00

The boys were making cakes with play doh and singing Happy Birthday to each other. I grabbed my phone to try to catch it because it was so cute. Of course, they stopped singing as soon as they saw me. This is what I got instead:

Way Back Wednesday (a day late)

2011-02-10T14:17:00.003-06:00

July 2009-- one month before her 5th birthday

This photo makes me so, so happy! Bonus points if you can tell me where

it was taken...

Ten on Tuesday

2011-02-08T06:14:00.003-06:00

Ten things that made me HAPPY so far today:

1. Today is IEP day. As I was preparing for the meeting, it made me smile to see, in black and white, all the progress that Peas has made since this time last year.

2. My two little boys running towards me at top speed screaming MOMMY! after school.

3. Today was Peas' turn for show and tell at school. He stood up in front of his entire class and spoke about what he brought. A small thing that most people take for granted, but not me.

4. Hearing Cameron affectionately call his sister "Mimsers." (one of her many nicknames)

5. The bright sunshine outside.

6. The smell of my warm vanilla sugar body lotion.

7. Sore muscles from last night's yoga practice. I am a better person inside and out because of yoga. Sounds hokey, but it is absolutely true.

8. Chamomile tea with honey.

9. Knowing that Mia is wearing a special King of the Jungle crown at school because she is the special person this week.

10. A repeat viewing of Sunday's Glee episode AND knowing that there will be another new one to watch tonight!

The Consult

2011-02-06T06:06:00.003-06:00

Time for me to spill it.

I took Peas to another CI clinic last week for a consultation. If you have been following this blog, you know that we have not had a smooth, easy and typical experience with our current CI center. (If I knew how to add old posts in this new one so you could catch up, I would. Will have to consult someone smarter.) Despite the fact that I think the audiologist we work with now is excellent, I have always had lingering doubts about the clinic as a whole and our vastly different philosophies in many areas related to CI's. I have wanted to do this consult for over a year and finally did.

The clinic we visited is not easy to get to. It is approximately a 100 mile trip, but often takes three hours each way because of traffic. So for this to happen, I had to arrange coverage for my other kids and it basically took the entire day for a 90 minute appointment. It was a long day.

I brought every single audiogram that Peas has had since he was first activated. (The first time he was activated was July of 2008. His real activation was October of 2008. See? Not typical clue #1) The plan was for the audiologist to put Peas in the booth and see what happens. Before she did that, she glanced through most of the audiograms and said something like: Noah is a powerhouse kid. He needs more stimulation than most children his age and hearing age. He's not typical. I get it.

This was after five minutes in her office and minimal explanation of his case thus far.

So we got a solid audiogram on each side and she tweaked his MAP so that it would be more balanced across all frequencies. We talked for quite a while about what I want and what she thinks is best and then we left.

Now I have a big decision to make. I have been compiling a list of questions to ask (thanks FB friends!) and trying to weigh all the pros and cons.

Advice?

Peas Quote of the Day

2011-02-02T19:13:00.002-06:00

"Mommy...tadpoles change into frogs. That's the rules!"

Independence

2011-01-28T11:57:00.002-06:00

Had parent/teacher conferences for the boys yesterday. Their fabulous teachers had wonderful things to report to me and both kids have made a lot of progress so far this school year.

They know all their numbers, colors, shapes, etc. and are mastering things like holding a pencil correctly and writing their names. They are both right on track developmentally. They are both making friends and don't often play together in class. I was especially happy to hear that Peas has a little crew of boys that he plays with in the loft area of the classroom. Apparently the three of them love to make up stories and do other imaginative play. Not bad for a kid who has been hearing a whole year less than those boys!

Cam has also branched out and made some new friends who share his passions: animals. He is not much of a "project" kid yet, much preferring to work his way through the toys in the room. He is much more willing to share with the other kids than he was in the beginning of the school year. The only concern we have with him now is following directions. He likes to do his own thing---always has. We are going to make that a huge focus at home.

Both teachers also mentioned that the boys need to work on being more independent. They need to start doing more things for themselves.

Guilty as charged...

Sometimes I forget that they are ALMOST FOUR YEARS OLD and I still treat them like babies. Well, maybe not just sometimes.

This is not to say that they are going to have to start shoveling the driveway or scrubbing toilets or anything; but I know that there are things that I do for them way too much that they can do for themselves.

Wordless Wednesday

2011-01-26T07:22:00.002-06:00

Ten on Tuesday

2011-01-25T06:09:00.002-06:00

(I have a lot of CI related things to blog about. But I'm holding off and doing this instead.)

1. We live in an area with very little traffic. If something is 20 miles away, it would generally take about 25 minutes to get there unless it is rush hour or there is a ton of snow. I spend very little time in my car now that my boys attend our local preschool and Peas is done with therapy. It's a refreshing change.

2. Sex and The City was on the other night. That movie just never gets old. Love.

3. I got my hands on an old Cochlear snug fit and am going to try it on our Med-El processors. I still love using tape, but am always looking for better options. I think I read about doing this on another blog but can't remember where...

4. Do I really have to wait two more weeks for a new Glee episode? I know most people can't believe they have to wait two more weeks for the Superbowl (i.e. my Steelers fan husband living in Packers country) but come on. I am almost getting tired of watching the Gwyneth episode. I need new material.

5. Speaking of the Packers, I will not be turning on the news for the next two weeks. You can only understand why if you live here.

6. The boys are still madly in love with school. They screech when we see the building. I will have to figure out a way to video it because it is too cute. "Mommy!! Look!! I see something!! I see BIG BOY SCHOOOOOL!!!" I am so excited that they are going to be doing the extended day option next year. And I am actually really looking forward to packing their lunches twice a week. Weird, huh?

7. This is the year I turn 40. We are already planning a weekend away. I want to go somewhere close because I don't want to spend a lot of time in the car. Suggestions?

8. I miss yoga. My husband has been working insane hours (leaving the house at 6 am and not getting home until 11 pm. Really. Wish he could bill for those hours!) and as a result I am not making it to my beloved yoga classes. My body feels it.

9. But, I despise people who complain all day, every day and are not grateful for what they have. I am trying to make sure I am not one of those people. It's a work in progress.

10. I love reading other people's blogs. It is so amazing that I have friends all over the country who are going through a lot of the same things my family is. I have learned so much about this journey from my CI Mama friends. I still have the 2012 AG Bell convention in my plans, girls!