Life with Lucas

three years

2012-01-09T19:04:00.000-08:00

Happy 3rd Hearing Birthday, Lucas!

It's been three years since Lucas's hearing journey began. We were told that day to keep our hopes high and our expectations low, but we learned quickly that he would far exceed our expectations. We did, however, have no idea that we'd be where we are today... with a little boy who never stops talking, who is ahead of his hearing peers in terms of language, who very successfully attends a mainstream preschool, who is very social and makes friends easily, and who is just a typical kid.

Life is so normal, and easy (ok, minus the newborn...) right now, that sometimes I forget how far we've come. Today I sat down with Lucas and watched all of his youtube videos from his first year of life. I'm so thankful that I chronicled his listening/speaking/communicating milestones in this way, because I forget about the baby steps and the joy in the little things that first hearing year. Lucas got a kick out of the videos, and I cried a lot. He kept wanting to know why I was crying. My response? "It's complicated." It's tough to explain to a 4-year-old the sorrow, joy and relief that those videos evoked.

I forget sometimes that he went from beeps and buzzes to coherent receptive language in less than 3 months... that by 6 months he had 11 words/approximations... that by 12 months he was caught up to his hearing peers. I forget sometimes how incredibly hard we worked that year. The messy house you see in all of his videos? Totally worth it in exchange for more mommy therapy. That 7 month hiatus I took from my job to teach Lucas to listen and speak? It was worth every moment spent and every penny lost.

We have been incredibly blessed by this journey. We are forever grateful to Graeme Clark, the inventor of the cochlear implant, Dr. K. for his skillful implantation, and all of his therapists, who have helped teach him to listen and speak. We can't wait to see what this next year will bring for him. Enjoy the video from his activation day!

moments

2011-12-24T19:36:00.000-08:00

It's moments like this that I'd like to freeze in time...

...my two beautiful children on Christmas Eve, all dressed up for church and festivities. Next year, Nora will be well on her way to being a little person, leaving her babyhood.

It's moments like this that made my heart melt...

...as I watched my little boy turn four, and beamed with pride at all the obstacles he's overcome in his short life.

It's moments like this afternoon at church, when I first noticed the sign language interpreter beautifully interpret the Christmas hymns, and froze for a moment, imagining how our lives might have been... not bad, not sad, just different.

It's moments like that, when I marvel at modern medical miracles like the cochlear implant that allow the deaf to hear, that allow my son to enjoy the sounds of Christmas, just like me, just like his baby sister.

Without this technology, we wouldn't have heard Lucas ask us where the camel was in the Christmas sermon play, we wouldn't have reminded him that he needed to whisper during the service, and we wouldn't have heard him attempt to *sing* along to the hymns.

It's moments like right now, Christmas Eve, when I sit her with immense gratitude to Graeme Clark and Dr. K, for giving this gift of sound to my son, and many other deaf children around the world, changing the way they experience Christmas, interact with their family, and take on the world.

It's moments like those at church this afternoon that will never get old, that we will never take for granted.

Merry Christmas! Wishing you peace, love and joy!

Dear Lucas

2011-11-08T12:42:00.000-08:00

Dear Lucas,

You've been a big brother for almost 7 weeks now. What an awesome time it has been (especially when Daddy was home). We've tried really hard to make you feel special, and so have all of our family and friends with their little presents to you.

You were so lucky to have met Nora just a few minutes after she was born. What a special moment for mommy! You are so gentle when you hold her, and you love to give her hugs and kisses (even if you do smother her once in a while).

You are Mommy's little helper! You get me supplies when I'm tied up, and it's even good practice for you with following multi-step directions. "Please get me her blanket and the pink burp cloth in the basket." Once a therapy mommy, always a therapy mommy.

Nora is a more challenging baby than you were in some ways. She's not as content as you were, but my days with her are much more carefree than my early days with you were. My biggest concern with her is when she's going to want to eat next or whether she's going to keep me up all night, as opposed to whether you could hear or would need open heart surgery. As a result, I'm more willing to share her with others this time around. With you... not so much.

On the day she was born, she had her hearing tested... right in the room with Mommy. It was extremely emotional, and I cried the whole time. The nurses in the hospital still need some sensitivity training and education. Even with knowledge of your history, they still told me not to worry about it, and if she didn't pass, it was probably just fluid in her ears. We're the wrong family to tell that to! Here is the screen that we saw:

She passed her hearing screening in both ears. She can hear. The results really evoked mixed emotions for me. Although we are elated that Nora will not have to endure what you did (the tests, surgeries, therapies, etc) or go through the life long struggles of living with a hearing loss, somehow rejoicing too much in the results was also the same as saying that you are not perfect just the way you are, and that we somehow love you less. Needless to say, we have not shouted her hearing results from the rooftops with joy, but rather whispered them with some sense of relief and ease. It's very personal. I think only some of my fellow hearing loss mommies might understand.

I worry about the day when you start to ask me why Nora doesn't have ears like you. For now, you don't seem to be particularly concerned about it. ever. We have yet to have any of those difficult conversations. Sometimes I try to initiate them, and you just move on. You know what your ears are called, and that you need them to hear, and that's about it. Although you ask "why" about 1,000 times a day, that has yet to be one of your questions. The word "deaf" has yet to come up either. Maybe I'm as bad as the audiologists we worked with in the very beginning, but I'm just so hesitant to teach you to label yourself already. You are still only 3. But not for long!

I'm enjoying my time at home with you and Nora IMMENSELY. You did ask me the other day if I was going to work so Oma could wake you up in the morning. Nope... not for 9 more months. Yippee!

I can't wait to watch you grow up with Nora. We can only hope and pray that she is as sweet, witty and feisty as you are. You will teach her much about the world around her. It's scary to think that by the time Nora is your current age, you'll be almost 8. I hope that day doesn't come too soon.

I love you with all of my heart,

Mommy
xoxoxo

introducing...

2011-11-08T12:36:00.000-08:00

Nora Susanna

born mid-October 2011

6 lb 10 oz

20 in

Lucas is absolutely smitten by her. I can't wait to watch them grow up together. She is one lucky girl.

We are so proud of how well he has adjusted. He is not at all jealous, and just has pure love for her. This is such an incredibly joyful time for us. There's nothing in the world like having BOTH babies want to cuddle all the time. Our family is complete.

Ten on Tuesday

2011-10-11T09:27:00.000-07:00

What's new with Lucas?

1. I've been home on medical leave for a week now until the baby comes. We're trying to avoid another premature birth, and I'm really glad that my doctor had enough insight to suggest that I stay home. I might be blogging a little bit more now too. :)

2. Lucas is so excited for his baby sister. I hope it continues. When I asked him the other night how he's going to help, he replied, "I'm going to change her diaper, help put her to bed, read her stories, and she's going to sleep over at Oma's house." Priceless.

3. In preparation for the big birth-day, Lucas has been spending the night at my parents' house once a week. It is the highlight of his week. I always ask ahead of time, and then make him call and ask too. I LOVE seeing him talk on the phone. It always amazes me, and I believe it always will.

4. I love Fall! I used to think Spring was my favorite time of year, but it's definitely Fall. I love the cooler weather (with a passion), and I love watching the leaves change colors. It's also the season of fairs, and pumpkin patches, and new vocabulary topics. I enjoy living in a part of the country that sees all 4 seasons.

5. Speaking of weather... this weather makes me want to spend time outside, as opposed to inside like during our humid summer. Lucas plays so nicely with our older neighborhood children, and we can just sit in the driveway, and watch him play from a distance. I'm so happy to live in our new house, and to be part of a nice little community. We've been in our house a little over a year now.

6. Last week was our town's annual farm show. Lucas has been looking forward to it all year. We told him that as soon as the leaves started to turn colors that it would be time for the farm show. Lo and behold... the leaves started to change and it was farm show time! He got to see cows, pigs, sheep, goats, alpacas, bunnies, and a few other animals. We went every day. Here's a picture from the festivities:

7. I've been enjoying my (rest) time at home, but I'm also taking advantage of celebrating autumn with little Lucas. We decorated the house, and last week we made "Halloween" cupcakes to share with his neighborhood friends. He was so proud of these!

8. Our little fish is taking learn-to-swim lessons at a local retirement community. We're going to continue through the winter. I'm so incredibly thankful for the ability to waterproof his CI, as lessons would not go as smoothly without him being able to hear. During the first class, I decided not even to mention to his instructor that he's deaf. I wanted to see how he would do. Other than the swimming cap (which is a little strange for a 3-year-old, but not too out of the ordinary), his CI was not visible, so no one knew his little "secret". Admittedly, it was kind of nice to not have immediate looks or questions. He did pretty well, but it was apparent that he would need some minor accommodations so it doesn't appear that he's just ignoring his instructor! The indoor pool area echoes excessively, and she really needs to be within close proximity to him (and his microphone for that matter) for him to hear her well. She was surprised when I told her, and very happy to accommodate.

9. One month ago, we welcomed the newest addition to our extended family, my niece Audrey! She is Ryan's little sister, and was born healthy and full-term. Lucas and Ryan are a month apart, and now Audrey and our baby girl will be about a month or so apart too. And no, we didn't plan it that way, but we're so excited about it! Our boys are great buddies, and we hope that the girls will grow up to be great friends also.

10. I'm 36 weeks pregnant today, and it's quite a milestone to have reached! I'm now a few days past the point when I delivered Lucas. Every day we are one step closer to bringing home a healthy baby girl! Here's a photo of me with Lucas a little over a week ago. Let the FINAL COUNTDOWN begin!

language sample - 3 year 9 months

2011-10-10T11:35:00.000-07:00

Here's a spontaneous language sample from a few weeks ago. I wanted to record him talking about going to the beach, as that seems to be his highlight from this summer. Enjoy!

naïve

2011-10-03T06:27:00.000-07:00

A better name for this post would be not-so-naïve.

When I was pregnant with Lucas, I remember quite vividly having my first ultrasound at 20 weeks. I knew that at that time, we would be able to see if our baby was "structurally sound," if you will, in addition to possibly finding out the gender. We had no gender success (for another few ultrasounds), but we learned that day that Lucas had 10 fingers and 10 toes, and I felt so relieved. SO RELIEVED! As if 10 fingers and 10 toes could predict the health of my baby.

Flash forward to his premature birth, a result of a premature rupture of membranes at 35 weeks (my water broke), followed by an 8-day NICU stay (I was discharged without him on Christmas Day!), 3 failed newborn hearing screenings, a detected heart murmur, and another birth defect. We left the NICU with a neonatologist (who should NOT work with NICU families) telling us that Lucas was going to die because of his heart defect... never mind his hearing. To say that the first few weeks of his life were difficult is a VAST understatement. I woke him every 3 hours for the first month of his life to feed him. And, I didn't put him down for about 2 months. Really. We even slept together on the couch. Add to it the fact that I spent 10 hours a day trying to (unsuccessfully) breastfeed him for the first 3 months until he was hospitalized with RSV for 5 days, at which point I decided to pump full time for the next 10 months. He was then hospitalized again for 5 days at 6 months old with suspected meningitis. Those first few months are seriously a blur. He had 2 sedated MRIs, a CT scan and 2 surgeries by the time he turned 1. I never once had a carefree day with him. Never even once. There's a CD I used to listen to during that time to try and relax. When I hear it now, it makes me absolutely sick.

I'm not looking for pity at all, but that was my reality. I now know that it really could have been much worse. We have so many blessings to count. But it still wasn't easy, and you'll never understand until you have a similar experience. Lucas is the center of my world. His joy brings me happiness every.single.day. His lust for life clouds over the intense sorrow and worry I had for him as a newborn. His success is because of a fighting spirit on both his part and ours. We now only look with lots and lots of hope toward the future. We are at a great point in life with Lucas, and we hardly think about that first, difficult year.

However, with the imminent arrival of our baby girl, Lucas's birth and infancy are all that's on my mind. It's the only thing I know. And this time around, I'm not so naïve.

I know the devastating effects of premature birth. I know the heartbreak of a NICU stay. I know the struggle of unsuccessful breastfeeding. I know the stress of several difficult diagnoses paired with numerous specialist appointments 90 miles away. I know the anxiety of not one, but 6 surgeries for my child, in addition to several painful tests.

But, I also know how to try and prevent premature birth with closely-followed prenatal care. I know that my baby will probably come home after a NICU stay (at least at this point in my pregnancy). I know that I can still pump breast milk and give my baby the nutrition she deserves. I know how to prepare and pack an infant for a long day of specialist visits. I know how to prepare a child (and myself) for surgery and tests. I know where to look for and find invaluable parent support! AND I know how to teach a baby to listen and speak.

We know that it's certainly possible that our little girl may have a hearing loss. I know families with 1 of 4 children with EVA, and I know families with 4 out of 4 children with EVA. It is absolutely not out of the realm of possibilities. It will still be devastating, and we will mourn for a time, but we will be prepared. And we know what a bright future she will have. She has an AMAZING big brother to look up to. At this point, it is the least of my worries. And, if she CAN hear, she might just be the amazing 6-month old talking baby (haha), because auditory-verbal therapy is an integral part of our parenting lifestyle.

This one has got to be easier though, right? Here's praying for an easy next 2 weeks (to full-term), a smooth delivery, and most of all... a HEALTHY baby girl who gets to go home when her mommy is discharged. Bring it on.

1st day of preschool

2011-09-12T18:30:00.000-07:00

I've been quite neglectful of the blog this summer. I'm actually a little sad about it, but I can say with certainty that we had an AMAZING summer with our little man, and blogging just didn't fit into the picture very often.

Being pregnant this summer and chasing after an energetic 3 year old with a busy schedule kept me very tired. Most nights I would put him to bed and go straight to bed myself. I don't like to give "no time" as an excuse, because I believe you make time for what you want to make time for, so instead I will chalk it up to "no energy."

We spent lots of time in the pool. This kid is a fish. Seriously. We often dressed him like this, although he lost the tube pretty quickly because he's so great in the water! The one-piece outfit is SPF 50, so that we wouldn't have to put suntan lotion on every inch of his body.

Check out this daredevil:

Lucas spent time at camp, we went on many day trips, spent some time at the beach, and just enjoyed having mommy around full time. We didn't get through the whole alphabet, but did quite a few letters.

Lucas had his first day of preschool today. He attends a mainstream preschool, at the same location as last year. He will attend 3 days a week for 2.5 hours this year with nine other typical hearing peers. Much to my dismay, I was unable to go with him to his first day, but Oma took him and reported that he enjoyed himself and was happy to see friends from last year. One of the mothers inquired about his ears, and wondered how well he could speak. Apparently she was pretty impressed when she heard him. (*insert proud mommy grin here*)

Lucas continues to receive services at Schreiber Pediatric Rehab Center, one of my favorite places. He gets speech therapy once weekly and physical therapy biweekly. He still struggles a bit with his gross motor skills, although he's progressing well. He also gets weekly services from a great Teacher of the Deaf at home. I believe he is thriving with his current services. He had some formal testing done at CHOP this summer when he was 3 years 6 months, and he was testing in the 4 year 2 month to 4 year 8 month range in a variety of receptive/expressive/skill categories normed against typical hearing peers. GO Lucas!

I'm on the final countdown... 7 weeks or fewer to go in this pregnancy! It has not been a particularly easy pregnancy, and I've been watched closely because of Lucas's premature birth and myriad of health issues. I've had 16 (weekly) shots of 17P (progesterone) so far to prevent pre-term labor, and I only have 4 to go! This week I start weekly non-stress tests. I will be glad when she's here. She has a name, but it is a secret. Not even Oma knows. Of course, I have my worries, but I can tell you that hearing loss is at the bottom of that list. We know that it's certainly not out of the realm of possibilities. But, that's another post altogether... hopefully soon.

Wordless Wednesday

2011-07-27T19:09:00.000-07:00

brought to you by the letter "s"

2011-06-24T19:12:00.000-07:00

Today I bring to you the first installation of our ABCs of summer. Basically, I'm going to pick a letter of the day to concentrate on, and try to find as many things to do for the day that start with that letter. We are also going to practice writing that letter, and talk about its sound all day. I'm hoping that this will give our days a little bit more focus, while working on pre-literacy skills and vocabulary expansion with Lucas!

Today's letter was S. We practiced writing it in one of these cool workbooks that I got on Amazon a few weeks ago on sale...

We ate an egg & cheese Sandwich for breakfast...

Then we went to the park to play in the Sand...

Swing like a monkey...

go down the *gasp* plastic Slide...

and we finished off the first half of the day in Oma's Swimming pool...

It was easy, fun, (free), and focused. It gave us something to talk about all day long. I was happy when Nate came home from his grad class and Lucas told him about the letter of the day unprompted! I'm looking forward to the rest of our ABC days... in no particular order, of course.

Thankful on Thursday

2011-06-23T19:50:00.000-07:00

Things for which I'm thankful this Thursday...

1. A great cardiology appointment. We were in and out of there in about 45 minutes, including an EKG, a heart echo and two visits with his cardiologist. Lucas was cooperative, although a bit apprehensive of all the tests. We also got a preliminary results reading of status quo. His heart condition is no better, but it also does not appear worse! We'll take it. You can read a little more about Lucas's heart here.

2. Our new home and new neighbors. We enjoyed spending time with our neighbors at "hot dog Thursday" tonight, while Lucas played with the neighborhood kids. I love that our neighborhood gets along so well that we have a get together once a week!

3. Waterproofing CI efforts. Lucas is a different kid in the water when he can listen and we can reason with him. We are limited to our 50 or so survival signs, which don't include ultimatums, reasoning, and bribery. It's so much more effective when he can hear us!

4. Summer break. My stress level has decreased significantly, as has my blood pressure! I am thoroughly enjoying being home full-time with little-boy-blue. He's enjoying his "mommy days" too!

5. The public library. Lucas has a love of books, and is highly motivated by new books. We have been having a blast visiting the library to check out books and DVDs every week. The summer is still young too...

6. A boy that never stops talking. He talks to himself, he talks to his stuffed animals & he talks to me constantly. It never.gets.old. I will never.take.it.for.granted. I often ponder the idea that he was truly born to talk. Without his CIs, that never would have been a reality for him. It's so sad for me to think about.

7. Light-blocking blinds in Lucas's bedroom. With these blinds, he doesn't mind going to bed before it's dark, and he would also sleep until 9 AM some mornings, if I would let him. He's rather sensitive to light, I believe in part due to a heightening of his 4 other senses, because of his loss of hearing. It's just a mama theory though.

8. 2-sided wig tape. When we saw Lucas in recovery after his most recent surgery, the nurse informed us that Lucas would have to wear his left (new) ear only, because of the incision. I laughed out loud. We could try that, I thought to myself, if she wanted to see a very agitated preschooler yelling, "I need my ear," while groggily awakening from anesthesia. Instead, I popped off the ear hook and stuck it to his head with the ear tape that I keep in all of my bags. Beautiful solution. She even thought so.

9. Children's Hospital of Philadelphia. I wouldn't imagine taking Lucas anywhere else right now for all of his specialty care. We feel very blessed to live within (pretty) easy driving distance to their facilities. Lucas sees some of the best doctors in the nation, and I feel very comfortable with him in their care.

10. Family. I'm so thankful for the very special relationships that Lucas has with both sets of grandparents and his aunts and cousins. They also help us out tremendously. I'm so glad that we live so close to everyone.

For what are you thankful this Thursday?

Cooperative or uncooperative? That is the question...

2011-06-22T19:14:00.000-07:00

I'll give Lucas a grade of B on the cooperation level today. Overall, we had a great day. I was flying solo. It was just me, Lucas, the GPS lady, and Dave Matthews. The same exact trip that took me 1 hr 20 minutes on Monday took me 2 hours flat today. It's a good thing that I left at 7:45 AM for our 10:00 appointment. I timed it perfectly.

While sitting in traffic on the Schuykill, Lucas informed me that he had to go potty. I told him he had to wait. That was not good enough of an answer for my 3 year old munchkin. He started to cry and whine. We weren't going anywhere, but there was nowhere to pull off on the side of the road, not even a small shoulder. I made an executive mommy decision: Lucas was going to pee in our potty on-the-go, while I was driving. He unbuckled the top and I unbuckled the bottom of the 5-point harness, and he wiggled onto the floor the sit on his moving potty. Then we reversed the order. I was pretty relieved when I heard that last click. It ended up being a good decision, as we wouldn't arrive for another 30 minutes.

What happens on the Schuykill, stays on the Schuykill. I promise, precedent has not been set.

The purpose of today's speech & audiology appointments was strictly new ear follow-up (6 months post-activation). We started with speech, and Lucas was quite cooperative. He gets an A- for that appointment. It was interesting to see some of the deficiencies he still has with that ear, although he's come a long way. He has trouble differentiating between /b/ and /d/, and he was unable to discriminate the word "ball" at all, on several occasions. He confused it with "dog". We decided that if he would slow down and listen, he might get more, but he wants it to be easy, and he just tries to fill in the information. I think that it comes back to the disparity between the two ears. It IS really easy for him to hear with his old ear. He has to work hard with his new ear. At one point she used the phrase, "read the book" and he repeated, "ride the bike." He got the r/d/b/k part, just not the vowels. I thought that was pretty interesting.

He got a nice little break between appointments: some time to play and have a snack. I thought he would be good to go for audiology. He was more interested in doing this:

That was really only part of the time. He was willing to listen to the various frequencies/decibels, but he lost it when he was asked to repeat and/or point to pictures. He moved into teacher mode.

This is where I pulled out the bribery card.

When we went to the room for him to be mapped, I reminded him several times that we would go to the Please Touch Museum if he listened to M. He remembered playing on the digger & dump truck, and he kept confirming that that's what we would do. I think the ~~bribery~~ encouragement worked. He let M map him pretty well. He got a few new programs to work through, that hopefully will help him in the lower frequencies.

We had a great time at Please Touch!

He was asleep about 5 minutes after we got in the car to go home. The only thing that kept me awake for the ride ahead was singing a little Dave at the top of my lungs.

Lucas couldn't hear me. It was probably a good thing, to which my husband will attest.

Tomorrow's line-up includes the last day of camp for this session, and another trip to CHOP for a heart echo and a visit with cardiology. At least we won't be driving the whole way into the city, but going to the King of Prussia office. There might be time to stop for a little Baja Fresh too...

the next day

2011-06-21T19:09:00.000-07:00

Lucas is totally back to himself, and he had a great day. I did give him some Tylenol, but I sent him to camp because he seemed to be feeling so well. It is amazing how quickly he is able to bounce back from surgery. He's even looking forward to heading back to the hospital tomorrow to see speech and audiology. We talked a lot about how he would not see any "hospital beds" and there would be no "ouchies", but that he would have to listen with his new ear! I'm really hoping he cooperates. I'm prepared to take him to the Please Touch Museum after his appointments, and bribery is not out of the question to get him to cooperate... maybe he'll just do it naturally though!

behind us

2011-06-20T18:17:00.000-07:00

Yes, it is over, and I hope that life gets back to normal relatively quickly.

Lucas is sleeping right now, without me by his side... so that is good! He even willingly went to bed. Here's how our day began...

I was up at 3:30 AM, after a whopping 4 hours of sleep. My mom arrived at 4 AM, after no hours of sleep. We were off to a great start. I woke Lucas up at 4:15, and *luckily* he peed on the potty for me before we left. He was in a good mood, and happily reported, "Mommy, I sleep through the night!" We were on the road by 4:20, and we arrived at CHOP at 5:40. You gotta love no traffic!!!

Surprisingly, when we reached surgery reception, there were already lots of people waiting. Lucas was called back at 6:07, and we hung out, meeting with about 10 different people, until 7:30 when they took him back to surgery.

Our nurse was really great, and she was with him both before and after surgery. He was a little skeptical of all of the prodding at times, but he was very cooperative. The *giggle* juice that they use to decrease anxiety started working just a few minutes before they took him back, but was quite effective. He didn't mind leaving us at all.

Oma and I checked in at surgery waiting, then headed to the cafeteria to grab some breakfast. We brought it back up to eat, just in case they came around with an update. By 9:00, I had already spoken with the surgeon, and they came to get us to see him. Surgery went well, and he believes that he removed enough tissue and cartilage that it won't return. Lucas slept for another 2 hours (thankfully they let him do so this time). It was perfect, because our nurse was just about to wake him up when he awoke on his own.

The only comments I got from him about the procedures of the day were, "Mommy, I don't want a shot," (wish granted), and "Mommy, this hurts," when she was removing all the tape from his IV area (the whole way up his forearm). He was happy to eat a popsicle, and then we left. On the way home, he vomited once (not surprisingly), but Oma was quick and caught it. He wasn't sick the rest of the day!

Lucas slept much of the way home, and we were home by 1 PM. Lucas was very insistent on eating and drinking, so I'm glad his stomach was able to handle it. I filled his pain medication prescription, but he would.not.take.it. I called the pharmacy for advice and they said they could add flavoring & decrease the bitterness, but he still.would.not.take.it. We some how forced it in him, but from now on, I'm just giving him Tylenol.

He napped again from 5:30-6:30, and I was afraid that he wouldn't go to sleep at a decent hour. But, at 7:30, he was ready for bed. He insisted on a bath, and I'm sure it made him feel better. I just wouldn't let him get his hair wet. We read some stories, and I think he was asleep by the time his head hit the pillow.

I hope he has a good night. I'm really hoping to send him to camp tomorrow. We'll see how he feels.

Thanks for all of your thoughts and prayers!

Let summer really begin!

preparations

2011-06-19T19:43:00.000-07:00

Happy Father's Day!

Lucas is a very lucky boy to have such a great father. He often excitedly remarks that if he eats all of his supper, he will grow big and strong like his daddy! When daddy takes his socks off, so does Lucas. He wants to emulate his father, and I'm so glad that he does.

On to what's on my my mind... surgery. He will be having his recurring branchial cleft cyst on his right ear removed. We will leave home at 4:15 tomorrow morning, for a 6 AM arrival time. I can't complain, because this is the way we like to do it. We miss all the traffic on the Schuykill Expressway heading towards Philadelphia, and it's much easier to keep food and drink away from him when it's so early. We're also usually home at a decent hour.

This is surgery number 6 for our little Lucas. I have a lot of trouble with that number. I think that's more surgeries than Nate and I and our families have had combined, let alone for a three year old in a three year period. I'm thankful for great medical care and a happy little boy, but part of me is very sad for all that he has been through. I hope that this is the last surgery for a long, long time. But I said that last time, and the time before last. Maybe I should use reverse psychology and say that I'm looking forward to his next surgery soon.

Kidding.

I have a couple of stories to share about preparing Lucas for surgery. It started when I told Lucas about his friend Jack's recent surgery. He proceeded to tell me that he needed to go see Dr. K (his surgeon) to have his ear "booboo" fixed. I was so floored, because I hadn't mentioned it to him yet at all. But I went with it, and agreed, telling him that it would happen soon.

Then, tonight before bed, I picked out some books pertaining to the hospital. He sat down on his bed and says to me, "Why did you pick out a book about the hospital? Because we're going to the hospital tomorrow?"... and proceeds to giggle. LOVE, LOVE! So intuitive.

After reading books, I asked him what he wanted to bring along to the hospital. He said "doctor bear" and then "Elmo, like I did last time." Last time?!? Last time was his 2nd CI surgery, 7 months ago, before he turned 3. I was kind of hoping he had forgotten about that, but not my kid. He has the craziest memory, in my opinion.

So, I will update tomorrow night, hopefully. I think he will do just fine, as he at least seems to be looking forward to seeing Dr. K (who has performed 4 of his 6 surgeries, by the way). He is certainly very aware of his surroundings, is quite inquisitive, and doesn't miss a single beat. So, it will be interesting. He's a trooper though, that's for sure.

Thanks for keeping our little Lucas in your thoughts and prayers tomorrow!

Ten on Tuesday

2011-06-07T19:43:00.000-07:00

1. If I get around to posting a Ten on Tuesday next week, it will be my last day of work for the summer! CAN'T WAIT!

2. Lucas started camp today at his preschool. He's going twice a week for two 3-week sessions. He told me: "I liked going camping today!" So cute.

3. Lucas is a fish. He likes to swim around in his little pool with his face in the water. I need to get this boy some swimming lessons. It's on my to do list for tomorrow.

I love this picture!

4. We had a great family day last Saturday! I signed Lucas up for the summer reading program at our local library, we picked up our second CSA share (and saw the farmer & chickens, aka Lucas's favorite part), and went to a strawberry festival. Lucas liked the barrel ride the best, riding it three times.

5. June is our month at CHOP. Lucas will be having surgery on June 20, and he'll also be seeing audiology, speech, cardiology & genetics in a matter of a week. Such is the life of a teacher. June appointments are coveted.

6. It's a really good thing that Lucas is seeing audiology soon. I think he needs a new map. His new ear needs to be tweaked a little bit. I guess that's what frequent mapping appointments are for the first year.

7. We took Lucas to pick strawberries last week... he was really interested in picking the "orange" ones, and it was tough to convince him otherwise!

8. Lucas and I have some big plans for this summer... In addition to my ABC's of summer plan (more on that later), I'm looking forward to a little bit of me time while he's at camp. I want to read (finish) these books: If a Tree Falls: A Family's to Hear and be Heard, and Sounds from Silence: Graeme Clark and the Bionic Ear Story. Any other suggestions for hearing loss / CI books that I might enjoy?

9. Skip right to #10 for an interesting development in our family saga...

10. We're having a baby GIRL in November! Lucas is going to be a big brother! Here she is!!

Ten on Tuesday

2011-05-24T18:56:00.000-07:00

After a short hiatus, I'm back with some updates!

1. Lucas has had a little language boom, like today. We've been working on "do" support, and he's finally using it unprompted. Instead of "Mommy, you want to play outside with me?", he's consistently asking, "Mommy, do you want to play outside with me?" He was even emphasizing the do.

2. While we were playing outside, he started to take off in his "pedal truck," (aka motorized car), and I asked him where he was going. He responded, "space, outer space." Where did he get that one?

3. When I was putting him to bed tonight, I said, "Goodnight, Lucaberry" (one of my nicknames for him). He said: "That's not my name. My name is Lucas... You can't call me that. You eat berries, like blueberries. But, I'm a boy. You can't eat me." Whoa. That blew me away.

4. Lucas has woken up the past 3 morning dry. I was so impressed the first day, but I didn't expect it the next day or the next. I'm just so floored that he's potty-trained during the day at all, that I've had no expectations for overnight. We'll see what happens tomorrow!

5. Lucas has officially bonded with his ear. He hardly touches it in the car anymore. In fact, the other day, when I took his new ear upon entering the car, he asked me, "Why are you taking my ear?"

6. While we were playing outside tonight, his new ear fell off. I took it for safe keeping, because I figured the wig tape had lost its stickiness, and I would replace it when we went back inside. He walked right over to me, and said, "I need my ear." I've been waiting for that moment for about 5 months now. So happy.

7. Lucas stopped by at International Culture Day at our high school, and sat so still to have his face painted. He chose an elephant. Lucas was so excited that so many students knew his name! What can I say... we talk about him a lot, and his reputation certainly precedes him!

8. Lucas continues to eat great international food with us! Sunday night he enjoyed sushi. He ate an entire roll (6 pieces) of California roll and shrimp tempura. He was eating edamame like candy too. He was really into eating with (modified) chopsticks AND he was pretty successful too. I hope he never gives up his adventurous eating habits!

9. We picked up our first share from a local CSA. I'm so excited to pick up our produce directly from the farm, and to share that experience with Lucas. We got lettuce, arugula, tatsoi, bok choi, and radishes. It feels so good to buy fresh & local, and to try some great veggies that we normally wouldn't buy. Lucas liked seeing the farm and the chickens, but he wanted to know where the roosters were. I didn't have a good answer for him.

10. We have less than 3 weeks of school left. The students aren't the only ones counting down...

Happy Easter!

2011-04-24T18:21:00.000-07:00

2011

2010

traditional portrait in front of Oma's tree...

Happy Easter!!!

Ten on Tuesday

2011-04-19T19:23:00.000-07:00

1. Lucas's ear is healing nicely. I'm just really hoping that it doesn't happen again before surgery. I'll know how to handle it though. The third time was an easy prediction, so the fourth time I think I'll just prescribe the antibiotics myself.

2. I still don't believe that Lucas is potty-trained. He's had a great week. Yay for not buying any more diapers!

3. This week's forecast is rain, rain and more rain. I'm ready for spring. I want to play outside with my kid.

4. Last weekend we somehow managed to fit in an Easter egg hunt amidst the rain. I don't think we'll be so lucky this weekend.

5. Now that Lucas is potty-trained, I'm able to send him to "summer camp" at his preschool! He'll be going twice a week, and I think it will be a good way to keep up with his school routine and give him some extra language opportunities!

6. Lucas has really been into drawing and coloring lately. I'm really impressed with his attention to detail and how he tries to color in the lines. He's also showing some interest in learning to write his name.

7. It's so fun to watch Lucas pick up incidental language. My favorite lately is how he starts his sentences with "well..."

8. Lucas makes things up all the time. My mom and I have decided that we have to compare the stories he tells us, because we never know if he's telling us the truth. I think he just has a wild imagination.

9. Lucas ate really well for dinner tonight. He ate salmon, couscous, steamed broccoli & half of an apple. AND he cleaned his plate. When he was done, he got down, stood on his tiptoes and said, "Look, I'm tall now. I'm big like you, daddy." What a great moment.

10. Just when I tell someone how easily Lucas goes to bed, and how he sleeps through the night, he makes a liar out of me. The past few nights have been really difficult trying to get him to go to sleep. This too shall pass, I hope.

it's baaaack...

2011-04-16T19:05:00.000-07:00

I noticed it on Friday after school. It was red, puffy & warm. I didn't waste any time, deciding to call CHOP directly to speak with a nurse in ENT. She called me back later and prescribed yet another antibiotic. *cringe* It was nice just to describe the problem over the phone and have them know what I was talking about, skipping the middle man (the pediatrician). I guess it also happened once in March and once in February, so I knew what was coming. Today the skin over the scar was paper thin and almost see through. It looks like it has opened up in this picture, but it has not yet. That's how thin his skin is there.

Surgery is currently scheduled for June 20, to remove this mess again. Hopefully it won't erupt again in May and June. But we haven't been that lucky so far, three months in a row...

On a positive note, we have a potty-trained boy on our hands! He was finally ready, and it has not been a struggle this week! I'm just hoping that the antibiotics don't mess with his little system and make him regress to diapers. He won't eat yogurt for us, so we've been feeding him lots of frozen yogurt. He's not complaining!!

the dreaded "s" word

2011-04-13T18:47:00.000-07:00

Surgery it is.

The surgeon confirmed that the cyst has returned, and that he needs to remove it again.

I will call and schedule the procedure tomorrow, hopefully in June when school is over.

Sigh. This makes surgery number six.

Ten on Tuesday

2011-04-12T18:52:00.000-07:00

1. This picture was taken yesterday at our favorite local outdoor eating spot. It was 80 degrees yesterday, and cool and rainy again today. I'm ready for some consistent spring weather. Enough with the weather yo-yo-ing!

2. Lucas heads to CHOP with his daddy tomorrow to see Dr. K about his ear. I'm anxious to hear what his recommendation is. It doesn't like like the "cyst" has exactly returned, but who knows. We're still praying for no surgery.

3. Operation peepeeonthepotty has been somewhat successful over the past few days. I decided to forgo the training diapers and go right for the big boy underwear. Although he's had a few accidents, he's doing really well! I've vowed not to buy any more diapers.

4. I went through all of Lucas's spring/summer clothes last night, and I am soooo ready to put away his winter wardrobe and break out some new looks!

5. We took Lucas to see Hop on Saturday afternoon. It was not as good as Tangled, but he sat through most of it. He even ate almost an entire small popcorn by himself. Scary.

6. I ordered some extra Aloksak bags today from Amazon. Summer swimming with hearing, "hear" we come!

7. Lucas had a conversation with my dad on my cell phone tonight (speaker phone). It will never, ever get old that he is able to do that.

8. Lucas has a new obsession with our cats. It's a good thing that we have the most.tolerant.cats.on.earth. They even seem to like the attention. Our one cat is as big as Lucas is.

This one was taken after Lucas pulled Sammy off the back of the couch. He didn't seem to mind though, because he is there willingly in the picture.

9. We're busy making summer plans! It's less than 2 months now until summer break, when I get to spend some major quality time with my boy! I have so many ideas for some great language-rich experiences!

10. Now that I think about it, I can't remember the last time that Lucas took off and hid or dismantled his new ear... that's exciting!!!

looking better

2011-03-25T18:24:00.000-07:00

Lucas's ear looks really good right now, except for that little spot. We did not see Lucas's ENT or anyone else from the office on Tuesday, and I was okay with that. We will follow up in a few weeks.

As for his other appointments at CHOP... well, Lucas was very 3. He was pretty cooperative, but rather distracted in the booth, and he was only testing at 35-45 dB with his new ear. Mapping was another issue. He was not happy with having his ears attached and not turned on, and just wearing the new ear alone to be mapped. He still has the same program for his old ear as he's had for at about 6 months now, but he has a new map for his left ear, to give him some more access to quieter sounds. Somehow we managed that.

Then we were off for his hearing evaluation with speech (to measure his progress with his new ear). Surprisingly (because of how he acted for audio), he performed pretty well. She was well planned and quick with her activities. He's able to process more right now than he did at 2 months post-activation, so we're happy to see progress. He had a little trouble with single-syllable words with either the same first or last sound. Those discriminations are still emerging. We concluded that he just needs to gain more confidence, and we should see lots more progress at 6 months post-activation in June.

For now, we'll continue to practice with his new ear alone. Tonight we were playing hearing games, and he asked me to take my old ear off... so I played along and pretended to hand it to him. He proceeded to cover his mouth and ask me to pick up the zebra. It was super cute. He gets it, in his own 3-year-old way.

Now we just wait for his ear to heal and to meet with his surgeon again. Still praying for no surgery!

how cool is that?

2011-03-21T19:09:00.000-07:00

I called CHOP first thing this morning, as promised. I spoke with a nurse and she said she would get a message to Dr. K, and either she or he would call me back. I was so happy to talk to Dr. K personally this evening, and the first thing he said to me was, "I'm looking at the picture of Lucas's ear on your blog post right now, and I can see that..."

How cool is that?

He was able to "diagnose" over the phone because of my blog post! He changed Lucas's antibiotic dosage slightly, and gave me some further instructions. He wants to see Lucas in 3 weeks, and then we'll decide what to do from there. He said that it's "very likely" that the cyst has returned, and it may need to be removed again. Ugh.

The site actually looks better than it did yesterday. The swelling has really decreased, and you can see a little hole now too.

If timing is right tomorrow, we may see Dr. K. Or maybe he'll just look at this image again. :)

weekend of ear woes...

2011-03-20T19:04:00.000-07:00

Happy Spring!

It has been a weekend of unprecedented ear woes. We have generally had very good luck on the ear front, both bionic and biological. I guess aside from the need for cochlear implants, the CSF gushers, the branchial cleft cysts, and the tubes... okay, wait. I guess everything is relative. I just mean that Lucas does not have recurring ear infections, etc. and that we rarely lose or break any of his equipment.

Except this weekend.

Friday night for the first time, we spent time on a CI scavenger hunt. It was short lived, but it was really the first time that we've been worried about finding the elusive 2nd CI. It was in the living room the whole time, but Lucas insisted that he dropped it off the deck. Boy did I breathe a sigh of relief upon finding it.

Then on Saturday, just when I was thinking about blogging about how well Lucas has been doing with wearing both ears in the car, we arrived home from his doctor's appointment (more about that later), and he had taken the new one off and pulled it apart. When I put it back together, it would blink normally, but then when I put it on his head it was a solid orange. Not good. I asked Lucas where it had been, and he pointed to his nose. Lovely. We put it in the dry and store for a few hours during his nap, and that seemed to do the trick, but it was working sporadically again today. Great. We'll see how it acts this week. Good thing we're going to CHOP on Tuesday, because I can get their opinion about which part is damaged, if it's still giving us trouble.

Back to the doctor reference. Friday afternoon I noticed that his right ear was swollen, right on the same site as the branchial cleft cyst removal incision, just like last month. On Saturday morning, it was worse. Since I don't like to mess around with anything related to his ear, we went to see his pediatrician. The doctor agreed that there's some kind of infection in there, and prescribed him more antibiotics. I can't say that I'm a fan of antibiotics every few weeks, but my opinion has changed since having a child with significant medical concerns. There's no messing around. I'll be calling the ENT early tomorrow morning to ~~beg~~ request to be seen by someone while we're at the hospital on Tuesday.

I removed the ear hook from his right ear, and am solely relying on wig tape to keep the processor on his ear. It's working just fine. When I put Lucas to bed tonight, I noticed a pin size hole forming on the incision, so I put some antibiotic ointment on it. It's pretty tender, and he doesn't like me touching it. This has happened now twice in 2 months. Either the branchial cleft cyst is back, or something is wrong with the surgical site almost 5 months post-surgery.

It certainly could be worse... we could have actually lost his CI, or it could be completely not working. We really have lucked out with our equipment so far. And Cochlear's customer service is really spectacular. I just had his coil and magnet replaced on his new ear this week, because the magnet got stuck somehow and I couldn't twist it anymore. It was replaced in 24 hours.

I'm just hoping that whatever is going on with Lucas's ear doesn't result in another surgery. Pretty please?

just like daddy

2011-03-19T13:08:00.000-07:00

April 2010

March 2011

Ten on Tuesday

2011-03-15T19:15:00.000-07:00

I've been enjoying reading other "Ten on Tuesday" blog posts over the last several weeks, and I decided it was my turn.

1. I should be working on my "Everything Google in the Classroom" course right now instead of writing this post. It will have to wait.

2. Lucas is adjusting to daylight savings time. It's been easier than it years past. As much as I enjoy that it stays light longer, I don't enjoy waking Lucas up during the week when it's still dark.

3. I've had enough teacher and teacher union bashing in the news to last me an entire lifetime. Enough said.

4. Lucas insists on being called a "big boy". I keep reminding him that he must start using the potty willingly to officially be called a big boy. Reverse psychology is not working. He's not interested.

5. I am so ready for spring! I want to play outside with my boy and spend lots of time at the park!

6. Lucas continues to make progress with his new ear. Tonight before his bath I noticed that he took the old ear off first and just had the new one on for a bit, willingly & unprompted.

7. Speaking of two ears, it looks really strange to me to see Lucas wearing only one CI. I remember how strange it was to see him with 2 CIs for the very first time. It's amazing how perspectives can change in 3 months.

8. Tonight I got my first phone call to act as a mentor through Parent to Parent of PA. There's a newly diagnosed family in my area that is looking for support. I spoke with the mom for about a half an hour this evening. I am so happy to serve new families in this way!

9. I rarely write a blog post without interruption or distraction. It often takes me 1-2 hours, because I stop and do other things. Tonight is no exception. I'm finished with my weekly work for my grad course. I guess Ten on Tuesday was the one doing the waiting tonight.

10. I'm looking forward to taking Lucas to PT and speech therapy tomorrow evening. One of these days I'll finally blog about our IEP process and Lucas's current services. He continues to work with an amazing team, and we couldn't be happier with his services right now! Okay... unless we were still working with Miss J...

3 months out

2011-03-09T18:52:00.000-08:00

Three months ago today, Lucas began the second part of his hearing journey... he began hearing with his second ear. It has not been an easy or quick adjustment, but Lucas is making good progress.

He still has not fully embraced the ear. If I forget to take it off when we get in the car, it inevitably ends up pulled apart and strewn around the car (just like his shoes). I like to avoid that at all costs, since I typically don't have an extra 10 minutes to play CI sleuth and risk not finding a piece.

He's still hesitant to wear his new ear alone. Even with a lot of bribery, he really resists any mention of wearing the new ear alone. He will wear it alone for his speech therapist though, so I'm thankful for that time every week. Tonight at speech therapy made it all worth it, to be able to watch him successfully listen with his new ear through the two-way mirror. She played a listening game with Mr. Potato Head. She would say the targeted body part and when he would choose correctly, he could put the piece on. When he stopped chattering long enough to listen, he got them all right! She also read a new book with him, and he was able to answer some of her questions, like "what is he doing?". I was impressed that she was even able to teach him (and have him repeat) new words with his new ear alone. He repeated "pinwheel" and one other word that I can't remember. I was very impressed!

He's definitely understanding, but he's still lacking confidence. I believe that his old ear sounds so great, so crisp, so normal to him, and the new ear is just okay. Maybe it's still a little fuzzy, or still has that robotic sound that we've all heard about. Although I have absolutely no idea what it sounds like to him, and he, of course, is unable to express what it sounds like to us, here is an example of what I perceive the progression over the last 3 months to loosely resemble. This example demonstrates how the sound quality changes with an increase in the number of channels, and has nothing to do with adjustment over time. Nonetheless, I think Lucas is still hearing (with his new ear) like the 3rd or 4th best repetition of that sentence... he can hear it and understand it, but it still sounds fuzzy and a little strange.

But, he's getting there, and it gets better every day. We don't go back to CHOP for his 3-month follow-up for another few weeks. I wonder what he will be doing in 3 more months? Continuing to exceed my expectations, I'm certain.

all clear

2011-02-23T18:31:00.000-08:00

Lucas's trip with his daddy to CHOP today was welcomingly uneventful. There's no sign of fluid in his left ear, and no indication that his branchial cleft cyst has returned. Dr. K. would like to see him back in a year, unless we have concerns. We are beyond thankful for this news, and that we are able to avoid surgery for our little Lucas.

Good night, little Lucas!

Thank the Lord you are well!

And now go to sleep!

said Mommy Campbell.

And I turned out the light -

and closed the door -

and that's all there is -

there isn't any more.

the future

2011-02-20T20:19:00.000-08:00

I've been following along on Facebook with the Cochlear Celebration going on this weekend in Orlando, FL. I'm looking forward to taking Lucas to the celebration some year when he can appreciate it a little more, and he's not such a handful.

The thing that struck me most from the pictures, was the teenagers and adults with cochlear implants. I'm used to seeing Lucas and a couple of other kids with CIs, but not teens and adults. It struck me hard that this is our reality. This will always be a part of his life, always. I've certainly come to terms with his deafness and his CIs, but sometimes it's hard for me to digest that THIS IS FOREVER. He will not grow out of this.

As much as I'm okay with him having them now, I'm not yet ready to see teenage Lucas with CIs, and certainly not adult Lucas with CIs. I'll grow accustomed to it, sure, just like when he got his first pair of hearing aids, and both times he got his CIs. I remember the day he got his hearing aids and I was so excited to watch him react to sound (that day never came). I remember the first day he wore his Freedom, and how tough it was to see it on his head. I remember the day he got his N5, and how bothered we were that the magnet is not even on his head with the other one. We hardly notice it anymore, and it even looks strange when he's only wearing one CI. They're a part of him. End of story.

It also got me thinking about what Cochlear's processor will look like 10 years from now when Lucas becomes a teenager, and what it will look like 20 years from now when he enters young adulthood. Just look at how the Cochlear brand processor has morphed over the past 20 years:

I know that the processor will be smaller, sleeker, and more waterproof. Heck, maybe it won't even hang on the ear anymore. Maybe it will just be a small magnet on the head. Whatever it is, I know it will be cutting edge, changing the lives of deaf children and adults all around the world. And really, who cares what it looks like!

I'd like to meet some more teens and adults with CIs so it doesn't seem so distant to me. That's easier said than done, as it was hard enough to find other children in our area, but it will be good for all of us, Lucas included.

he thinks it's a key too, I guess...

2011-02-18T20:37:00.000-08:00

This is what a healthy Nucleus 5 looks like:

This is what a Nucleus 5 looks like after it has been used as a key in a keyhole at Grandma's house:

It's a good thing that it was just a ear hook, and not an important part of the processor, like say... the coil, the rechargeable battery, the microphones, or anything else. This accessory could have just popped off, if it weren't held in place with a tiny medal rod because it's a choking hazard, but I certainly would rather have it break than something else. And, I have quite a few extras at home.

Although Lucas takes more to his new ear every day, this is a good illustration of how he still feels about it. He'd rather pretend like it's a key.

Last week at CHOP, Lucas was squirrelly, but still had a pretty good day. We had three appointments in three hours, but we got a good audiogram, he performed decently for speech and we saw his ENT for the first time since surgery. He is hearing with his new ear as well as he is with his old ear. He's not processing sound the same way yet, but he certainly has good access to it. His audi gave him a word recognition test in the sound booth that he typically gives to Kindergartners, and Lucas got something like 87% accuracy with both ears (he had to repeat what he heard), including words that he wasn't very familiar with, like vase. I think it's pretty amazing that the professionals with which he works are willing to give him assessments that are way above his age level, just to see how he does. I'm progressive. I like progressive.

He wasn't breaking any records with speech, but he was doing more than he was last time, and is certainly showing progress. We'll take it. Last night when I was testing his Lings, he was able to identify ahhh, ssss, and eeee correctly, but he was confusing shhh with ssss and switching oooo with mmmm. He can definitely recognize and repeat his name though. That was one of the first things he could do with his first ear too. Again, he's progressing, but still has a ways to go. He works hard with speech therapist every week though with his new ear alone, and we continues to see those glimpses.

Our visit with our ENT has resulted in 2 weeks of antibiotics and another appointment this Wednesday. Lucas has fluid in his newly implanted ear, and we need to see whether it's fluid as a result of having had a cold a few days before our visit, or whether the CSF gusher that occurred during surgery is leaking. The scar from his right branchial cleft cyst removal has also opened up, and we need to see whether the cyst has returned (which is definitely a possibility), or else is just a fluke thing with the incision. Both could result in another surgery, depending on what the surgeon sees on Wednesday.

On a happier note, Lucas really enjoyed the warm weather today. We're so looking forward to spring.

Wordless Wednesday

2011-02-16T18:49:00.000-08:00

our little owl

2011-02-06T12:57:00.000-08:00

When Lucas entered preschool this year, I was really looking forward to ordering books from Scholastic. At times I've gone a little overboard, but I've enjoyed ordering seasonal books to reinforce the weather, holidays, etc. we are experiencing. In the Fall book pack I ordered, we got a book called The Littlest Owl.

It's the story of the runt of an owl clutch who is last to hatch and may never catch up with his three other siblings. Dumpy, small, and downy white, he is left behind while his siblings learn to fly. No matter how hard he tries, he can't quite do it. "I will," he says. "Just you wait and see!" When a storm threatens the family's willow tree home, he is finally able to fly. It took him some extra time, but he did it. The story describes the owl's daily frustrations like being the last to find a worm. But, we never fear for him, because he never worries himself. The story has beautifully soft illustrations and is written in rhythmic prose. I'd read it to Lucas every night, but he doesn't like it nearly as much as I do.

I like it so much, because it reminds me of him. He is that littlest owl in more ways than one. He was late to walk, late to talk, and he's small for his age (1%). But he perseveres. He learned to talk, despite the odds being stacked against him, and he never stops (no complaints here). He learned to walk at 21 months, and although he's still behind, he makes strides every day. And despite his small size, he certainly makes up for it with his large presence. We put him in a mainstream preschool this year, and he took off and flew, up for the challenge. We may have questioned what his future would bring, with our hopes highs and our expectations low, but he never doubted himself. He always knew he would and he could.

I have a new love for little, white, fluffy owls. I look forward to many more opportunities to watch our little owl fly.

master lip reader

2011-02-05T20:20:00.000-08:00

So, I guess I'm not keeping up with all of my New Year's resolutions (namely blogging 2-3 times a week). Some are clashing with others currently. But here I am, and here's a much overdue update. We, like most other parts of the country, have been experiencing some icy, snowy weather. Lucas has had a blast playing in the snow with his daddy and aunties, while I stand around and take pictures. :)

On the ear front, Lucas has been making some progress, I believe. I am learning, however, that he is a master lip reader. I have to be really extra careful that he cannot see my lips when I'm testing his new ear alone, or else he absolutely knows exactly what I'm saying. It's best if his back is completely to me, because I think sometimes he sees my lips with his peripheral vision when he's not looking directly at me. You can tell that he's still just beginning to recognize some words, because he's terribly uncertain. He plays a guessing game when identifying objects, always looking for confirmation because he's just not sure. He's gaining some confidence though, and we continue to see glimpses, despite the 30 times a day (truly not an exaggeration), when he takes his ear off and we ~~threaten him~~ politely ask him to find his ear ~~immediately~~ as soon as possible. I can't wait until he's over that. One time last week, he even made it an entire 20-minute car ride without ripping it apart and throwing it on the floor. I was seriously thrilled.

I just think it's so interesting how well he reads lips, because he absolutely needs NO visual clues with his first ear. He does not rely upon lip reading one tiny little bit with it, but he's still good at it. I figure that because he is still technically missing one of his senses (even if it's certainly being compensated for really well), the other 4 are stronger, especially his sense of vision. I also think back to his entire first year of life without sound. I think he learned to use his eyes to gain information about his world, because his ears were no good to him. Whatever the reason, lip reading is a great skill for him to have for the future, and right now in the bathtub. Except for when he thinks "no pee pee" and "no mommy" are the same thing.

We head back to CHOP on Wednesday for another mapping session, an auditory evaluation and an appointment with his ENT, followed by a well-deserved stop at Baja Fresh. Hopefully he'll show some progress since last month. If not, we'll just keep pressing forward. He might need a little extra time. And that's okay. We'll get there. Still thankful for that first ear.

live united

2011-01-22T19:52:00.000-08:00

Last year (2010), we were fortunate enough to have Lucas be the subject of our local United Way's campaign video. I blogged about it here, where you can also view the campaign video.

On Thursday we were asked to appear on our local television station to promote an event thanking all of the contributors to the campaign. Together, our county raised over 8.5 million dollars for the United Way. I can't help but think that Lucas's story helped contribute to that amount just a little.

We were only contacted on the day before the news broadcast, and I told them it would only work if they could broadcast from our home, due to the fact that we're at work by 7:15 AM daily. At 5 AM Thursday morning, the news van pulled into our driveway and our story was televised live at 5:30 & 6:30 AM. Talk about pressure to say the right things! We also recorded a segment to be played at noon. Lucky for us, we have a record of all 3 broadcasts, thanks to DVR. You can see the 6:30 coverage here. Although I did not script what I said, I had a couple of key points that I wanted to make. I wanted to praise the cochlear implant for giving him access to sound, attribute his ability to listen and speak to the hours upon hours of therapies he's received, and acknowledge the agency where his amazing speech therapist works.

We were then invited to attend the thank you dinner to wrap up the program. I spoke on stage about the miracle of the cochlear implant and how Lucas's success wouldn't be possible without the hours upon hours of therapy that have been provided to him. Lucas also spoke to the audience, thanking them for helping him, and saying goodnight.

What a long, but powerful day we had. It was our way of giving back and a reminder of how blessed we really are, how lucky Lucas really is. He was born in the right decade (universal newborn hearing screen & cochlear implant technology), in the right country (with great access to health care), to the right parents (I'll take a little credit here for my perseverance), with the right genes (let's face it, this kid was born to talk).

We are so, so proud of our little man, and so thankful to be his parents.

a glimpse

2011-01-16T19:13:00.000-08:00

another pic from the Please Touch Museum last week...

I believe that I've gotten a glimpse, yes I have. A glimpse of what Lucas is hearing with his new ear. One month and one week after activation, Lucas is beginning to show us glimpses of his sound discrimination. His willingness to listen with his new ear alone has increased. His overall interest of wearing them both together is improving too.

On Wednesday at speech therapy, he worked a little for his amazing speech therapist with his new ear alone. He was reluctant but compliant. He showed some glimpses of discrimination with some word-sound recognition. I'm really happy that he's willing to work for her. Love her.

Nate and I have both observed Lucas playing around with his magnets to see exactly what he can hear. He will temporarily remove the magnet of a his old ear, just for a few seconds, while his eyes pause in a contemplative gaze. He's testing it out. I love to catch him doing it. I always pretend like I didn't notice.

It was recommended that we pick a favorite book of Lucas's, and try to read it with his new ear alone. Because he's so familiar with the book, the brain is more likely to process that auditory information because the pathways have already been created by the book. I chose one of my all time favorites, Hand, Hand, Fingers, Thumb. I love the rhythm and cadence of the book, the repetition, and the overall silliness of it. Lucas likes it too, but it's my favorite (as he would say). I've been trying all week to read this book to him with his left ear alone. The first couple of nights he chose to go to bed without any more books at all, instead of listening with his new ear. That's how much he didn't want to wear that ear alone. Then we compromised, and he pops off his magnet long enough for me to read that page, then he puts it back on, and we repeat. That way he has control over what he's hearing. It's not my first choice, but I'll take it, definitely.

Tonight, Lucas let me do some Lings with his new ear. Again, he just popped his magnet off long enough to hear my sound, then put it back on. I'm super happy to report that he was accurately identifying ahhh, eeee, oooh and sssss. He thought mmmm was aaaaah, and shhhhh was ssssss. Although my hand was in standard AVT position so that he couldn't see my mouth, he didn't even look in my direction half the time. I was really quite excited tonight... and hopeful.

Tonight I was given a glimpse of the magic his brain is doing, little by little. It really is amazing and downright marvelous the way it all works. It's really intriguing to watch the emergence of sound discrimination. We're going to get there... and I've gotten a little taste of it.

sounds like garbage

2011-01-11T19:47:00.000-08:00

at the Please Touch Museum today after our appointments...

We had a good day at CHOP. Lucas was cooperative, although he showed a bit of resistance with his new ear, when asked to wear it alone (not surprising). In terms of Lucas's access to sound, he's testing between 20 and 30 dB. The lower frequencies were testing closer to 30 dB, so he got a new program to help adjust that a bit. So, we know that he can hear well with that ear. The question is what he is processing.

During our speech session, Lucas showed great awareness to sound, including to all ling sounds. He is certainly trained to do conditioned responses! Next, she tried to see whether he could discriminate between long and short sounds (quack, quack, quack & boooaat). His appropriate responses were debatable. Even if he couldn't discriminate the two different words, he should have heard the length and rhythm of the sounds: "uh, uh, uh" vs. "uhhhhhhh". She moved on to see if he could differentiate even further between "up, up, up, weeeee," "it's bathtime; wash, wash, wash" & "night-night, shhhhh" (in coordination with appropriate objects). He was unable to do that at all.

We concluded that what he is hearing still sounds like "garbage" to him. He can hear it, but his brain is not making appropriate connections yet. There are a variety of factors that could be affecting its performance, including the ones that I mentioned previously. Again, I don't expect him to be hearing like he does with the other ear, but I would expect to see a glimpse of what he's hearing. He just shuts down and seems to not want to try.

It's only been a month, so we're just going to give him more time to adjust, and continue to provide him with opportunities to listen with his new ear alone. I left with some ideas for mommy auditory therapy, and hope for a better 2nd month. We meet again with speech in February, so I'm really hoping that he shows some progress by then, or else I will start to worry. Now all I need is a cooperative Lucas who is as excited about learning to listen with his new ear as I am. ~~Bribery~~ Encouragement with prizes is not working. *sigh*

Happy 2nd Hearing Birthday!

2011-01-09T19:19:00.000-08:00

Dear Lucas,

Today we celebrate 2 years since your 1st cochlear implant was activated. You officially have been "hearing" longer than you haven't been. That first year without sound seemed like an eternity, but now the ratio will keep increasing. You will never remember what it was like to be without your "ears".

You have had another great year of hearing. You never cease to amaze us. You want your ear almost from the moment you wake up, until the moment you go to sleep. You would probably even sleep with it on, if I let you. But, your ears need to charge and dry, and you need a break too. I continue to be struck with awe when you can hear me when your back is to me, and when we're driving in the car. You really hear amazingly well with your first ear. I tell people all the time that they have to see it to believe it.

We took you to the John Tracy Clinic this summer, and you loved every moment of it. You're still talking about it six months later. We learned so much to help you on your journey. We won't forget about it anytime soon either.

We made the decision to get you a 2nd cochlear implant in November. At last year's hearing birthday, we were hoping that it would happen, but it was still just a dream. I guess dreams really do come true. I just hope that you will love your new ear like the first some day and that we made a good decision. We felt like it was now or never. In a few years, you should really reap the benefits.

We enjoy every moment of watching you develop language. You are a little sponge, and you pick up on little phrases all the time. You talk as well as, if not better than kids your age. How incredible is that!

You love going to school, and your teachers, Mrs. C & Mrs. K say that you are a joy. You're always aware of where everyone is and what they're doing. They report that you hear well and keep up with the rest of the class. We couldn't be happier.

You're a big boy now. You've graduated from early intervention. I haven't the heart to tell you that Miss J will not be visiting you anymore. Fortunately, we're going to go and see Miss D at Schreiber, so that's just a change of scenery. On Monday you will begin to work with Miss C. I've heard really great things about her, and it will be the start of a new era.

We had a lot of fun celebrating your special day today. Last year was a lot of fun too. We went to church today, and you really enjoyed yourself. Then we had lunch with Daddy's family. Then you decided to take a nap. It's a good thing that you haven't given up those altogether yet, even if you do negotiate them once in a while. When you woke up, we decided to take you to see a movie. That seems to be your favorite thing to do these days. We saw Tangled. Disney certainly does it right. You were engaged the whole time... or maybe it was just the popcorn. You wanted to stay and watch "House" or "Up", as the rest of the world calls it. We had pizza for supper (one of your favorites), and then we celebrated with some cake, of course.

You happily sung "Happy Birthday" to yourself too...

I'm not sure you can top 2010, but we can't wait for the adventure in 2011. All I ask is that you try and adjust to your new ear. I promise it will start to sound normal soon, you just have to be patient. I know... that's tough for a 3-year-old.

We hope you had as much fun as we did commemorating this special day on which you were given the gift of sound through the miracle that is the cochlear implant. We love you. You inspire us. Life would not be the same without you.

All our love,
Mommy & Daddy

one month

2011-01-08T19:27:00.000-08:00

Tomorrow will be one month post-activation for Lucas's 2nd ear. Oh how I wish that I could report that things have been perfect, and that he can hear beautifully, etc., but alas, I cannot. I am a bit... disappointed. There, I said it.

I do realize that it has only been a month, and I know that it will get better with age and time. But, with this CI, I had my expectations set really high. When he was first implanted, we were told to keep our hopes high and our expectations low. That way we couldn't be disappointed. We obliged, but last time he far exceeded our (and everyone else's) expectations. This time, not so much.

Okay... to be fair, he's not doing terribly, just not wonderfully. Clear as mud, right? I mean, at his 1-week post activation mapping, he was testing at 20-25 dB in the booth. That's exactly where we want him to be. So, his implant is working properly, and he has optimal access to sound. But, his brain is still not processing sound in his new ear like the old one. Okay, fine. I don't expect it to be either. But, I do expect to seeing glimpses of what he's processing. We're getting nothing.

But, as much as he's not showing what he's understanding, I really think he is. He just won't let on to it. I believe that he is so incredibly high functioning with the first ear that he simply doesn't like what he hears with the 2nd ear. He totally shuts down, and won't show or do anything with it. He retreats into his own little world, silent, then demands to have his old ear back. The most I can get him to wear his new ear alone is 5 or 10 minutes, max. One time, his amazing AV therapist got him to wear it for an entire hour. Unfortunately, Lucas turned 3 and we're not working with her anymore... sigh.

It hasn't helped that Lucas has been really, really sick since New Year's Eve: coughing, head cold, fever, ear infections, sinus infection. Yesterday he finally started feeling better, but he's still not back to himself. Today alone I think I put his 2nd ear back on 25 different times. He hands it to me and says, "I don't need this." He's still adjusting.

I can now totally understand why people get simultaneous, bilateral implants for their children. It would be so much easier to learn to listen with both ears at the same time. Instead, Lucas has a huge disparity between how he hears with one ear versus the other, and he's too young to understand why. Simultaneous bilaterals weren't an option for us though, so it's not like we made a regrettable decision. We would have gotten him the 2nd CI sooner, but that wasn't an option either. So here we are, doing our best. We continue to be thankful that he has a 2nd CI at all. Some day I know I will be singing the praises of 2 ears... when he's in the elementary school cafeteria, on the playground or when one of his processors breaks. We'll get there... I know we will. I hope to give a better report next month! :)

goals for 2011

2011-01-02T12:57:00.000-08:00

You can call them resolutions, goals, or whatever you want, but one thing's for sure, we make them every year. They often only last a few weeks or months, but it's good practice to set goals, no matter when it is.

Our household is no exception. There's just something about starting a new year with a fresh slate, new perspective, and new found dreams and aspirations. That motivation that lacked in November? It's ever present in January.

So, here goes. I have a list of goals for myself, and a list of goals for Lucas. Making them public will hopefully hold me more accountable, and I think it will be fun to look back next January and see where I stand.

Goals for me:

1. blog 2-3 times a week
2. be a better wife to my husband
3. eat healthier (without meat as much as possible) and take up yoga
4. go to bed and wake up earlier
5. join a church

Goals for Lucas:

1. potty-train
2. adjust to new ear
3. learn to run & jump
4. learn to dress himself
5. learn to ride a bike

What are your goals for 2011?

end of year thoughts

2010-12-31T16:18:00.000-08:00

Wow, another year has gone by. Don't we say that every year? We had a very busy 2010 with 3 surgeries, spending July in LA at the John Tracy Clinic, and selling and buying a home. We celebrated Lucas's 1st hearing birthday in early 2010, and he's had a variety of other great experiences throughout the year. He has made great progress, and I came to terms with one very big part of this big hearing journey... Lucas is going to be okay.

I know it sounds silly, because obviously I knew that before now, but I'm not sure I believed it with all of my heart and all of my soul. I do now. Maybe it's the transition from birth-3 to 3-5 with early intervention and the stellar results from his multi-faceted evaluation (more on that later). Maybe it's the anecdotal stories I hear about his success in mainstream preschool. Or maybe it's just his zest for life and his natural, creative way of interacting with everyone he meets. Whatever it is, it no longer feels probable, but rather definitive that he will be a successful, independent part of society. And I feel free emotionally.

In the early days of his diagnosis, it was all about the unknown. We didn't know whether his hearing aids would work... we naively waited for that magical moment. It never came. Then we started from scratch at 12 months. He'd lost over a year of hearing, including his time in the womb. We wondered if he would ever catch up. But, he did and he has, and now we have a glimpse of what his future path will look like. It's bright and hopeful.

It's certainly not time to sit back and assume that his development will progress as normal. We remain vigilant and proactive. There will be bumps in the road. But we have a sense of normalcy, even with the new access to sound that he has with his left ear, and the feeling that we're starting over again. Maybe it's just our sense of normal, but it feels great.

2010 was a year of progress. Lucas made the language and hearing progress that we always dreamed he would, and we made lots of progress in our goal to have his 2nd ear implanted. There were times when I thought we would never get there, ever. But we did, and I'm so glad it's behind us. We only have the future to look forward to, with all of the benefits of having two ears. It can only get better from here.

What will 2011 bring? Many new adventures, I'm certain. Hopefully Lucas will stay out of the operating room, and will fully embrace his new ear. I really hope that I'm able to report next December that he loves his 2nd ear, can't stand to be without it, and can discriminate speech like he can with the 1st one. We've got our work cut out for us, but I'm up for the challenge.

Wishing you much peace, joy and prosperity in 2011.

CI activations: then and now

2010-12-28T11:36:00.000-08:00

1st CI activation, January 2009

2nd CI activation, December 2010

"When we do the best that we can, we never know what miracle is wrought in our life, or in the life of another." ~ Helen Keller

wishing you and yours...

2010-12-25T05:44:00.000-08:00

a very, merry Christmas!

"For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace." ~ Isaiah 9: 6

three

2010-12-23T20:47:00.000-08:00

Happy birthday to my little man. I can just feel that *three* is going to be a fantastic age.

the day we brought him home from the hospital

at his 1st birthday party

right after he turned 2

at his 3rd birthday party

Last week when Lucas was standing in the middle of his play room, playing on his horn and singing into his play microphone, I did some reflecting. I started to wonder if we might have a different child without his cochlear implant(s). Would he have the same interests? Would he be as outgoing? Would he be bossy like he is? Would he have the same relationship as he does with his Nanny? I don't know for sure, but I really don't think so. I don't think he would enjoy his shows, or singing and dancing, and he certainly wouldn't be as bossy as he is. His life has been changed. Our lives have been changed. What an amazing journey the past 3 years have been.

At the freshly-turned age of 3, Lucas...

* started asking "why?" repeatedly, today, in addition to "what's that?"

* loves pretend play. Right now his green duck is "angel" and his yellow duck is "baby Jesus."

* likes a variety of toys, including his train table, his little people sets and puzzles

* likes to watch the Mickey Mouse Club

* often responds, "um, no thanks" when you ask him whether he wants something

* negotiates everything he does...

* doesn't like to get dressed in the morning

* loves to play at Gymboree

* likes a variety of food, including sushi, guacamole, and edamame, and especially Daddy's mac & cheese

* wears size 2T pants and 2T shirts

* weighs about 28 lbs

* is not yet potty-trained

* speaks as well as his age-equivalent hearing peers

* loves books, and doesn't like the sames books to be read to him all the time (that's fine with me!)

* recites his numbers 1-20 (sometimes skipping over a few...)

* sings the alphabet (with some parts missing) and recognizes the majority of his letters

* knows his shapes and colors

* still lets Mommy give him 500 kisses a day

* loves to play with his cousins and friends, and asks about them too

* still talks about his teachers and friends from JTC, as if we were just there yesterday...

* remembers everything I tell him right before bed the very next morning

* is my biggest inspiration, the reason I get up every morning, and my little hero

HAPPY BIRTHDAY, LUCAS. WE ARE SO PROUD OF YOU.

birthday festivities

2010-12-19T19:32:00.000-08:00

I still have a 2-year-old for a few more days, but we celebrated him turning 3 this weekend. Last year it snowed heavily on the day of his party, so we had a birthday brunch instead. We liked it so much that we decided to do it again this year. Everyone in the family was able to attend, and it was a great day!

This picture is Lucas's birthday sentiment in a nutshell. "Happy Birthdaymas". It feels like Christmas, it looks like Christmas, it sounds like Christmas and it smells like Christmas. I guess that's the way it will always feel. It was especially fun to sing to him this year, because he sang along, with his own version: "happy cake to you..."

He asked for a brown cake... so he got one!

getting ready to sing...

family shot

Today Lucas was supposed to have his 3-year pictures taken, but that fell through, so we decided to continue the celebration at the Strasburg Railroad. It was chilly, but so much fun. His reactions to the big trains were absolutely priceless. He got to see Santa, and there were strolling carolers and musicians on the train too. He kept asking where Thomas was though...

pointing at the other big trains

trying to get the window open

getting tickled by Daddy

riding the cranky train

We also visited the Choo Choo Barn to see a huge indoor toy train display. That was quite impressive.

I can't believe he's all but 3. My how the time flies...

after a week...

2010-12-18T19:30:00.000-08:00

The first week post-activation was not particularly easy for Lucas. But I think we're getting somewhere. Maybe it's the fact that he's on program 4 now, or that he has had a week to adjust to new sound, or maybe a combination of both, but we saw a great improvement in his willingness to wear his 2nd CI today. Maybe it's also because today was his birthday party (more on that later), or because all of his favorite people were at our house today, but he didn't even try to take it off and hand it to me.

We're making progress.

On Friday, when his wonderful AVT was here, he even wore his new CI all by itself for an entire hour. That might not sound like a big deal, but it really is. We noticed that he was okay wearing it until we made him listen, and then he would get frustrated. He was responding to sound, but not really speech, but he repeated "ore" when he heard the word "more." I was seriously excited when I heard him say that.

We're looking forward to Tuesday, when Lucas has a new mapping session and 4 more programs to work through.

red stop, green go

2010-12-14T19:11:00.000-08:00

Lucas is at that age when it's really fun to take him places, and he benefits a lot (in terms of language) from new experiences. Being out in public = lots of curious stares. We're used to it by now, but that doesn't mean it still doesn't get to me from time to time. I haven't handed out any of my Lucas cards lately, but I'm finding my voice more and more when people stare.

Up until last week, people especially noticed his ear when it was dark. Why? Because the Cochlear Freedom blinks red, very red. Please understand that adult cochlear implant users turn this option off (and we will eventually also), but most pediatric users utilize it so that we, the parents, know whether or not the processor is working. But, why did Cochlear choose red? Red means stop, warning, caution...

I guess we weren't the only ones who thought the red blinking light was a little much, because the N5 doesn't blink red, it blinks green! When I'm not ~~bribing~~ encouraging Lucas to wear his new processor, I'm admiring these new green-blinking processors. Not only are they smaller, thinner, lighter and sleeker, but they no longer blink red. Green is much subtler and more natural. To me it means go and be happy, not stop and stare.

Other features that I love about the new N5s are the tamper resistant batteries and, of course, the increased water protection. As much as I wish he could have gotten his 2nd implant a while ago, the N5 has certainly been worth the wait.

lose and find, repeat

2010-12-12T18:28:00.000-08:00

Little Lucas had breakfast with Santa on Saturday morning, and thoroughly enjoyed sitting on his lap. When asked what he wants for Christmas, he responded "presents." I guess he will be easy to please.

We are on day 4 of post-activation bliss, and it's going... I would estimate that Lucas is wearing his new ear about 80% of the time. He won't wear it in the car, and it keeps falling off his ear, so that's not helping things. Then, there are the times when we're not looking and he takes it off and hides it. It's good that he's so verbal that he can find it for me when I ask where it is. I found myself telling him several times today, "you have until the count of 5 to find your ear..." We NEVER had this problem with his old ear, because he is so attached to it. He simply cannot stand to be without it. 2nd CI... not so much.

I've asked him what it sounds like, just to see what he might say. He responded, "beep, beep" and "silly." Interesting.

He will let me work with his new ear alone a little bit. When his SLP was here on Friday, he was in quite a silly mood. He wanted to keep turning on this little music box that plays for about 10 seconds then turns off, so we played along and would freeze when the music stops. Then I suggested to him that we try with just his new ear. He played along for a little bit, but kept putting the old ear back on. But, then he initiated the game himself by voluntarily playing with just the new ear. It was great.

Before bed, I've been trying to condition his new ear with the Ling sounds. I will face him without covering my mouth, while he's still wearing both ears. I'll pick a ling, say it with both ears, remove the old one so that he's listening with the new ear alone, and then say it with both ears on again. I'm kind of sandwiching the sounds so that his brain learns to recognize them. I realize it's still premature, because he doesn't have full access to speech with his current settings, but I feel like it's a start.

So, things are still going well, but it's a little bit of a struggle still. We'll get there though, we'll get there.

and then there were two

2010-12-09T20:22:00.000-08:00

We had... a GREAT day. I'm exhausted, and am a bit in overload, but we couldn't have asked for a better 2nd activation experience.

We started out early and even went out for breakfast to start our day. Lucas's audiologist was running a little bit late, because he had another activation this morning. We got to see that family as they were leaving, with two sets of grandparents in tow and everything. I engaged them in conversation, because they were excited to see that Lucas had a CI too. When we were in those early stages, I always wanted to talk to people in the waiting area, but others were not always as interested in talking to me. The father asked me how Lucas is doing, and I started crying... you know, that quiet cry that you try to hold in to no avail. All of the emotions of our almost 3 year journey to bringing sound to Lucas rushed to me in that moment, and I was unable to hold it together enough to express to him how well Lucas is doing. Words came out, but were not exactly what I wanted to say. There were really tears of sheer joy and gratitude, and he sensed that, but I wanted to say so much more. I wished them well and they were on their way.

Lucas did really well all day long. He looked a little concerned in the car as we talked about going to the hospital to get his 2nd ear. We assured him that there would be no ouchies, no jammies, and no going to sleep. He then grinned from ear to ear and his body language changed dramatically. Phew. We talked to him about how his new ear might sound silly, and how his old ear would have to be connected to his head, but not on, and how that would be temporary. I guess it worked.

I promise that I dress my child in more than an undershirt when it's 34 degrees outside, but inside this mapping room it was 90 degrees. He really had some great reactions to the new sounds he was hearing. You could tell that he was somewhat unsure, as his eyes would often just move to the side when he heard the beeps. But, other times, he would say "beep, beep". We thought that was really neat. He wasn't so sure about all of the new sounds, but he was definitely a good sport. Hopefully I'll be able to edit our video footage and post a highlights video this weekend.

He was pretty happy to build this tower...

side view...

rear view...

I love the N5s. There is such a marked difference in size. See for yourself. The side by side view does not look as different as the back view, but there really is a big difference on his head!

I never said I was a hand model... please excuse my very dry hands!

This is the very sleek remote control, that I still must learn how to use!

So, our day went as well as it could have. I felt like a little girl on Christmas morning with all of my excitement. We love the new N5s, but I'm admittedly a tad overwhelmed with figuring out how to work the remote in coordination with both implants. I need to check out the online tutorial this weekend and practice. I think it's a great feature though.

Lucas did amazingly well today, and took it all in stride. I told him how proud I was of him tonight before he went to bed. I must tell him that pretty often, because the other day I overheard him telling one of his bears, "I'm so proud of you." Priceless!

I will admit, however, that Lucas is not super excited about the new implant. He's tolerating it well, but he expressed several times today, "I don't like it." He always says it calmly though, and there haven't been any tears or tantrums about it. While driving this evening, I removed the new ear because I knew that he would take it off as soon as I shut the car door. We keep telling him that he must wear it so that it stops sounding silly. He happily lets me put it on his ear, and then he runs off to play and forgets about it. I can't ask for much more right now. He must adjust to having sound in this ear for the time, well... ever. I'm looking forward to his ear healing completely too, so that he can go back to wearing wig tape to keep it on his head. For now, we're just using the snugfit, but it's not nearly as effective as the wig tape.

We have four programs to work through until we return in a little over a week for a new mapping session. He definitely has access to sound right now, but it's very quiet, and he's unable to discriminate speech. The goal is for him to get used to wearing the processor and to gradually increase his maps so that he has full access to sound.

Over the next few weeks, we will try to spend some time each day with his new ear alone. We will start again at step one... sound detection. We will teach him to recognize the presence and absence of sound. Then we will be move up through the 4 levels of auditory development to discrimination (hearing the difference between 2 different sounds), identification (recognizing and labeling sound), and comprehension (understanding the meaning of sound).

I am pumped and ready to work with this new ear! But first, some sleep, and time to let this all sink in. It will take some time to get used to seeing two processors on his head. They will always be there. They will never go away. Sometimes, even on the best of days, it's hard to really digest that reality. But then, he will walk into the room and say the most magnificent sentence in the clearest, sweetest little voice, and it makes it all worth it.

Our baby is a BILATERAL bionic boy. Happy hearing birthday to your new ear, little Lucas.

nervous

2010-12-08T19:43:00.000-08:00

Tomorrow's the big day! Lucas's 2nd CI will be activated. My emotions are just about everywhere... I'm nervous, anxious, thrilled, elated, excited, worried, relieved. I feel like we've been waiting so long for this day. I still remember his first activation day, and asking his surgeon when we could schedule the 2nd surgery. He told us no time soon. I was crushed, seriously crushed. I never gave up hope though, and here we are, 1 month short of 2 years later, and Lucas is about to get bilateral access to sound. I can't wait to see how the 2nd CI enhances his hearing abilities. can.not.wait.

I believe that he hears with his current ear as well as he can absolutely, possibly hear. It is utterly amazing to see what he can hear, what he can understand and what he can discriminate with that one bionic ear. I'll say it once, and I'll say it again - I never in a million years thought that he would hear this well. Never ever. You really have to see it to believe it. It's indescribable.

In so many ways, I'm worried that he will have a difficult adjustment period to his new ear. He will not be able to hear well with it tomorrow. We are seriously starting from scratch. It will be beeps and buzzes. I've been told that it will take less time for his brain to make sense of this new electronic sound than the first one did, but it will still be an adjustment.

I'm totally up for the challenge though. In some ways I miss the fervor with which I approached teaching him to listen the first time around. I lived it and breathed it for so long, and then it clicked. We've just kind of been coasting along lately, because he's doing so well. No complaints. I'm ready to pull some old tricks out of my sleeves and get to work though. But, I need a cooperative almost 3-year-old with which to work. When we were at CHOP in October, Lucas would not let the audiologist map him. He could not stand for the magnet to be on his head and not be turned on, even when I explained to him what was happening. There will be a lot of that tomorrow. I've been told that 3 is a magic age though, so we'll just wait and see, and hope for a good day.

What can I bribe with with? I know... Baja Fresh. Wait, that's for me!!!!!!!!

countdown to...

2010-12-01T19:29:00.000-08:00

We are counting down to several things these days... activation on his 2nd CI is 1 week from tomorrow. I'm so excited to begin this new stage of the journey. I'm ready for the challenge.

We are also counting down to Christmas, starting today. I realize I'm not alone in this, but Christmas is my absolute favorite time of the year. From cutting down our tree as a family to decorating our house and tree, I look forward to December every year. Last Saturday we ventured out to pick out the perfect Christmas tree. After a ride in a horse-drawn wagon, we cut it down amidst the snow flurries. So fun!

set up tree...

add lights & an angel...

add ornaments and tinsel...

and it's done!

Lucas also has his own Christmas tree and nativity play set (great language opportunities!) in his playroom. I'm not quite sure who's more excited about the little tree, him or me. :)

Then, last week I got this great idea from one of my favorite money-saving blogs, Saving with Shellie. The idea was to make an advent calendar out of baby/children's socks and place a small gift in each sock to count down the days until Christmas. I found most of my supplies at the Dollar Tree, and some at a local crafts store, and in about 45 minutes, I had this set up:

I used red ribbon, mini clothes pins, various Christmas-themed socks, and little dollar store toys. Each sock has a number sticker on it.

It was so much fun to make, and I can't wait to open a sock with Lucas every day until Christmas. I think it's a great way to make Christmas more tangible for a child his age. It provides many language rich opportunities also. We will count the days, and look at the numbers, and talk about what's on the socks and in the socks.

How do you kick-off the holiday season?

a good decision

2010-11-26T12:16:00.000-08:00

When we met with the surgeon Monday morning, he asked us whether we wanted Lucas to be implanted with the N5 (sticking with the same company as the old ear), or whether we wanted an AB (different company) implant in his left. We joked about it for a few minutes, thinking that it would be silly to have two different devices, but he told us that some people seriously do have one ear from each company.

I thought about it for a moment (and really just a moment), thinking about the possibilities of having the benefits of both devices. Advanced Bionics implants are advertised as giving increased musical benefit to recipients, which I see as a big drawing point. We originally chose Cochlear, mostly because of the versatility of the babyworn processor to go easily between being clipped to the body and being worn completely behind the ear. We've been pleased with our decision, but I'm sure we would have been happy the other way around too.

On Monday, we decided to stick with status quo, as I've been dreaming of the Nucleus 5 device ever since it was released. I also am a big fan of symmetry. Having 2 different external processors brings more attention to his ears, in my opinion.

Well, I believe we made a good decision. The day after Lucas's surgery, AB voluntarily recalled their HiRes 90K implant, and retrieved all unimplanted devices in distribution. We would have missed the recall by a day. Apparently there have been 2 reports of recipients experiencing severe pain, overly loud sounds and/or shocking sensations at 8-10 days after initial activation. You can read the press release here. This may have caused Lucas to be explanted. I'm not sure what they would have recommended, but I'm very thankful that I don't have to deal with another element of stress in this whole process.

I've heard many, many good things about this company, and I sincerely hope that the problem gets solved soon, for both the company and the recipients.

a Thanksgiving message

2010-11-25T20:29:00.000-08:00

This message is brought to you by our little turkey himself!

We spent a relaxing Thanksgiving day today at my parents' house. Little Lucas is back to his joyful, silly self. We are managing his pain with acetaminophen now. He got to take a bath today too! Lucas had a busy day! He...

... watched Daddy carve the turkey ...

... broke the wishbone with Daddy ...

... ate lunch with a turkey on his head ...

... showed Opa Mommy's new toy ...

... played intently at Oma's train table ...

... spent time with his (and my) Nanny ...

... and was a good sport while posing for lots of pictures ...

We are so thankful this Thanksgiving for everything in our lives... our health, our jobs, our new home, our loving and supportive family, and our beautiful son.

It's hard to imagine what life would be like without Lucas. At his first Thanksgiving, we were anxiously anticipating his 1st cochlear implantation. At his 2nd Thanksgiving, we were celebrating the miracle of his access to sound. This Thanksgiving we are celebrating successful 2nd implantation and are awaiting the arrival of surround sound to augment his already awesome ability to listen and speak. I don't think we can top this next year. I will be content with a quiet holiday, and I look forward to looking back at Lucas's 1st bilateral year.

We continue to be unbelievably grateful for all of the healthcare professionals who have shaped and continue to shape Lucas's outcome. From his weekly therapists, to the audiological and education team at CHOP, to his talented CI surgeon, we feel very lucky to have such amazing professionals working with him. Cochlear implants change lives. We are thankful today, and e.v.e.r.y d.a.y for this medical miracle. 2nd activation is in 2 weeks, and counting!

second time around

2010-11-23T20:00:00.000-08:00

Yesterday morning started very early, just like we like Lucas' surgeries to start. We left our home at 4:30 for a 6 AM arrival time. By 8:10, Lucas was being taken back to the operating room. It was 4 hours... 4 long hours before we would see him again. Nate and I decided to go to the cafeteria and grab some breakfast, because we knew it would be a long morning.

We returned to the waiting room before 9 AM, just in time for our first nurse update. During the second update we got, she reminded us that she wouldn't be entering the OR from that point on because of the ear being exposed, and the risk of germs. She got a thumbs up from the surgeon though, so we took that as good news. At around 10:30 AM, we spoke with the audiologist who tested the implant. He reported that it was working great and the surgeon was just closing up. We got some relief from that news. Around 11 AM we saw the surgeon. He said that surgery went as expected - he was able to get a full electrode insertion, but he also hit a CSF gusher, just like last time. He was not surprised by it. Luckily, he was able to manage and control it quickly, so it shouldn't be a problem.

After we spoke with the surgeon, he told us that they were taking an x-ray (to make sure the implant was placed properly), and then they were going to do the heart echo. Yes, another heart echo. Because of Lucas's heart condition, he has a heart echo every 6 months. He had one in June, during his trigger thumbs surgery, so I decided to call his cardiologist and inquire as to whether he wanted to do another echo under sedation. He decided it was a good idea, so we scheduled another "two-fer". Hopefully we'll get a good report.

We got to see Lucas around noon, and he was discharged at 1:00. We were surprised that Lucas's head was not wrapped, like it was last time. They wanted him to be able to wear his processor, so they didn't wrap it. I was concerned that his incision was exposed and that he would pick at it, but so far, so good. It is well sealed with Dermabond.

Lucas never really woke up before we left, and he slept the whole way home. The nurse said he only needed to be "wakeable", which he was. She kind of rushed us out of there. We were worried that he would throw up on the way home, but he saved that until he got home, but certainly made up for it. The anesthesiologist gave him "double" anti-nausea medication, but it definitely wore off by the afternoon. Lucas slept on and off the entire afternoon/evening, only being awake for about 10 minutes at a time... long enough to beg for juice and crackers, throw it back up, and go back to sleep.

The discharge instructions said to call the ENT resident if Lucas threw up 3 or more times at home, so I did. She was very nice, and called in an anti-nausea medication to our local pharmacy. We couldn't give Lucas his pain medication or antibiotic if he was just going to throw it back up! CVS told us it would be an hour before the prescription would be ready, so I gave them my "sob" story, and they had it ready in 20 minutes. I'm glad I spoke up. We gave him the med, but didn't wait long enough to give him food/drink/medicine, so he threw it up anyway. But, that was the last time (7:30 PM) he has thrown up, and he ate pretty well today.

He actually slept through the night, but with me sleeping next to him, and both of us on the floor of his bedroom. I set up a little bed area for me, and he wouldn't leave my side, so that's how we slept. He woke up at 6:45 AM, and went strong all day, playing, walking and running. I have not noticed any increased balance issues or dizziness, so we're really grateful for that. I'm very happy to report that Lucas is pretty well back to normal.

Yesterday we really felt the effects of major surgery, but today you would barely know it. Other than the fact that Lucas would not take a nap today, even after 2 consecutive car rides during which he fell asleep, he had a great day. He expressed to me that his ear hurt when he woke up this morning. I was surprised that he was able to express that to me so well, but also very thankful.

Yesterday was no walk in the park. My stress and anxiety were really high. I couldn't concentrate on anything for more than 3 minutes at a time. I spent a lot of time pacing, and updating my Facebook status on Nate's iPhone, which is time consuming because it's not my phone. Several day surgery staff told us that we looked familiar. You know you're there too often when... This surgery was just different than the other surgeries though. We knew what we were in for, we knew what we were up against, and we knew what we had to lose. So far, the outcome has been as good as we could have asked for, minus the gusher. We are unbelievably thankful for that, and attribute it greatly to all of our wonderful local family/friends and our worldwide CI friends, who were praying for and thinking of our little Lucas. With 5 surgeries, 2 sedated MRIs and 3 hospitalizations in less than 3 short years, we're hoping this is our last major procedure for a long time.

Lucas's incision site looks great right now, and I believe it will heal quickly. The N5 implant is remarkably less noticeable on his head than the Freedom. I can barely feel it! The Freedom protrudes. The N5 looks much for comfortable. But what do I know.

Now the countdown begins! Activation is scheduled for December 9! At that time, he will get 2 N5 processors (one intended for back-up), but he'll wear them on each ear! He'll then have the Freedoms as back-ups. He'll be hearing with 2 ears before his 3rd birthday and before Christmas! YAY!

long day

2010-11-22T17:50:00.000-08:00

Here's the short version... tomorrow I will write a longer post. Hopefully Lucas will be feeling better then, and I will have gotten some rest.

It's been a very long, rather stressful, but successful day. We are home. We were discharged at 1 PM. The surgeon was able to fully insert the N5 electrode array, and it is working appropriately. It's been a long afternoon/evening though, because Lucas has not been able to keep anything down. He wants to eat anything and everything, but much to his dismay, he can't. I'm happy to report that he can walk though, although he's a little bit wobbly from the anesthesia. I hope he has a good night, and I'll write more tomorrow. Thanks for all of the prayers and well wishes.

meet Graeme

2010-11-21T18:53:00.000-08:00

Meet Graeme:

Graeme was born at Build-a-Bear last weekend. He, of course, was named after another famous Graeme. Graeme got two "cochlear implants" last weekend too.

Meet Lucas:

Lucas only has one cochlear implant, but will be getting one tomorrow, just like his bear friend, Graeme.

I can't believe this day has finally come. It's been an emotionally rough week for me leading up to this point. For every good reason I can give you for getting the second implant, I can give you a good reason for not.

What it comes down to is this. We want the very, very best for our son. We want him to hear the very best that he can, to make the rest of his life easier for him. We don't want to ask ourselves for the rest of our lives, "what if...?" If we're going to do, it has to be now. So, here we go. I can't wait until it's over. Please pray for an uneventful day, strong, steady surgeon hands, and a quick recovery.

Lucas will be a bilateral bionic boy tomorrow. Wow.

giving back

2010-11-13T19:03:00.000-08:00

Lucas is not thriving right now just because he got a cochlear implant. His access to any sound at all is made possible solely through the miracle of the cochlear implant, but his ability to discriminate that sound and mimic what he hears through speech is all thanks to the hours upon hours of therapy he has participated in.

Last year I was asked to be my school district's United Way representative, because Lucas receives services from United Way funded agencies. I was thrilled to share his story, and share the miracle of the cochlear implant. I wanted to show people that deaf children really can listen and speak, and what early identification and aggressive intervention does for young children. Lucas accompanied me to many district faculty meetings, but couldn't come to all, so I made this video to chronicle his journey.

Our local United Way agency caught wind of this video and asked if Lucas could be the star of this year's campaign video. We were really happy to continue to share his story with an even broader audience this year - the whole county. It's been really fun meeting strangers who recognize Lucas, and hearing from friends who have seen Lucas's video. One friend in another school district told me that they exceeded their donation goal for this year, thanks in part to Lucas's story.

Lucas is my miracle baby. He is an inspiration. He has changed my life. I hope his story touches yours.

a trick-or-treating kangaroo

2010-10-31T19:34:00.000-07:00

Lucas went trick-or-treating for the first time Friday night. Yes, I said Friday night. For some reason, our county decided to trick-or-treat on Friday night because Halloween fell on a Sunday. We went with it! The last 2 years, we just dressed Lucas up and gave out candy. This year, we went door to door in our little cul-de-sac. It was perfect for a little guy. He seriously had a blast. He would scuttle up to the door, ring the doorbell (if he could), and say, "knock, knock, trick or treat." He got to go with his cousin, Ryan, too. They were quite the duo.

HAPPY HALLOWEEN!

recovering...

2010-10-26T19:29:00.000-07:00

I was too tired to blog last night, so here's an update on Lucas's surgery. I'm happy to report that surgery went well and no tears were shed at the hospital. He's pretty well back to himself today. For the first time (unlike the previous 3 surgeries), Lucas was not the first surgery of the day. So, instead of arriving at 6 AM, we arrived at 8:15, so we hit traffic on the Schuykill. He was the second in line for surgery, so we had to wait until the first surgery was over. They didn't actually take him back to surgery until about 10:30. That was the longest part of the day - entertaining a busy toddler for 1 1/2 hours. Right before surgery he was pretty out of it, thanks to the giggle juice, so he didn't really mind when they came to take him back.

We said our good-byes, checked in at the waiting room, and headed to the cafeteria for some grub. When we got to the cafeteria at 10:40, it had just closed at 10:30 to prepare for lunch. So, we waited until 11:00, got something to eat and then headed back up to recovery waiting. We promptly got an update from a nurse who reported that Dr. K was done with the first ear, and was starting the second. A half an hour later, we got called back to recovery. Because of how he woke up during the last surgery, we let him sleep for 2 hours, hoping he would wake up more pleasant than hysterical. It worked. He was a tiny bit cranky while the nurse removed his IV, but as soon as he got his sippy cup, he was a happy boy. AND he didn't vomit at all either. It was a much better recovery.

So, we headed home shortly thereafter. He didn't have to pee to be discharged like he did in June. He did, however, pee plenty on the way home. We wondered why he was so fussy near the end of our trip home, and when we got home, we figured out it was because he was wet to his knees. Although he certainly has the language ability to tell me things like that, he just doesn't. He's a boy.

He had an uneventful evening at home, and went to bed pretty easily. However, a few minutes after I put him to bed, he was calling for me at the door. He had scratched off some of his dermabond. I think it was itchy for him. It wasn't bleeding, so we put a bandaid on it and he went back to bed and he didn't touch it anymore. He spent a quiet day at home today, recovering with daddy. He got to have a bath tonight too! We don't have to technically follow-up with the surgeon, because his CI surgery will be our follow-up!

Here are some pictures from our day:

playing doctor

stamped by the surgeon and ready to go

bossing around Elmo & doctor bear

getting cozy before surgery, thanks to giggle juice

sleeping off the anesthesia

doctor bear got a hospital bracelet too!

Now it's time to start ~~worrying~~ thinking about CI surgery. Somehow I can't believe that we're going to go through it all again. I know it will be worth it though. We have an activation date: December 9! His first activation was January 9, so that will help me remember. It will be 1 year 11 months to the day. Thanks everyone for your prayers and well wishes. It meant a lot!

pumpkin fun

2010-10-24T18:32:00.000-07:00

hay tunnels...

digging corn...

hayrides...

pumpkin pickin'...

pumpkin posing....

pumpkin painting...

CI pumpkin...

barrel riding...

positioning...

decorating...

pumpkin fun 2010!

before THAT surgery...

2010-10-22T19:37:00.000-07:00

As excited as we are for Lucas to get a 2nd cochlear implant, we haven't begun to think about it much yet. Why? Because he has another surgery scheduled for this Monday. When we met with his CI surgeon about the 2nd implant, we also inquired about his "ear pits" that discharge and sometimes get infected. He decided he wants to remove them prior to CI surgery.

For surgical purposes, they are classifying these ear pits as branchial cleft cysts. I would love to take a picture of them, but they're almost too small to photograph. It looks mildly similar to this, although Lucas's placement is slightly lower and more to the left.

this is not Lucas's ear...

They're really quite unnoticeable. In fact, when we took Lucas to see the geneticist for testing, the doc missed them during his examination. I had to point them out to him as being "abnormal." The pits are a congenital birth defect, and were at first thought to be just divots. But, the holes are actually canals that lead to sacs, and they drain, and sometimes even get infected. The infection part is worrisome, as he needs no extra risk of infection in his head. That's why they're being removed.

Surgery is on Monday. I got our arrival time this afternoon... 8:15 AM. I am thankful for the early time. I'm actually pretty nervous about this surgery. After his last surgery in June, I have concerns about how he will react to the anesthesia again after surgery. As he ages and develops more language, he becomes more aware too. 4 months ago he didn't ask too many questions, but I don't know how he'll act this time. I've gotten out doctor bear and the doctor kit, and we're going to role play. That's the best I can do to prepare him.

Your prayers for an easy procedure and a quick recovery are appreciated. I'll blog about how it goes.

home, sweet (new) home

2010-10-13T19:52:00.000-07:00

We are pretty well settled in our new home. We will be there three weeks on Friday. It has been a bit of an adjustment for little Lucas. We had our other house well baby-proofed, but we have had to double our efforts in this new house. Almost every door knob has a cover on it, we have locks for all of our cabinets, pantry, refrigerator, and we were forced to anchor his new dresser to the wall, because it almost toppled over on him. He has been less "destructive" this past week, but we're still glad the house is extra safe for him.

He just started sleeping through the night again. I had quite a few long nights sleeping on the floor, using his bear as a pillow and 3 of his blankets to keep me warm. I had to get him a new night light, because he was pulling the traditional light out of the socket and making me very nervous. Luckily he never broke a bulb, but I wasn't willing to take that chance anymore. This one also sheds less light, and I believe it has contributed greatly to him sleeping through the night again! Here's what it looks like when it's lit. It's cordless too - you just have to charge it during the day. I love it so much, I want to buy it for every mommy I know!

Lucas is enjoying his little pre-preschool class three times a week. He comes home every day with a fun art project and new language. He seems to be doing well in the classroom. Members of his "team", both current and transitional, are observing him in his school environment to see what his needs are. His IEP transition is going pretty smoothly also. Last Friday began his testing, and after a few more evaluations, we will meet for his formal IEP meeting. I can't wait to make my book!

Lucas helped Daddy build a bookshelf last weekend, and was just thrilled to use real tools! (he looks so serious & grown up here!!)

He thinks it's pretty fun to ride his "motorcycle" around the house. He uses it as transportation too, to get him from one room to another.

He likes our new driveway too... especially in the rain with an umbrella four times his size...

He has asked us to get one of these, but that will just have to wait. It sure was fun to play on it at the farm show though!

We were sad to leave our old house for about.... an hour. We love it here soooo much. Seriously though, that house holds a lot of memories. I can remember my highest of highs and my lowest of lows in that house. Every event in our life as a family so far has occurred in that house. Lucas celebrated so many firsts there too, especially with his CI. But, we are ready to move on, to start over, to spring forward, to create new family memories. There's no turning back!

Lucas is getting...

2010-10-01T18:27:00.000-07:00

* A SECOND COCHLEAR IMPLANT!!! *

Barring any insurance problems, Lucas will be bilaterally implanted with a Cochlear N5 implant in his left ear on November 22, 2010. Surgery will be at CHOP with with the same surgeon who did the first surgery. We are excited, nervous, anxious and just so incredibly thrilled to give him surround sound! More details to follow, but we just wanted to share our very exciting news!

and preschool begins...

2010-09-20T18:52:00.000-07:00

Lucas started preschool today. I'm so very sad that I couldn't be there, but we're thankful Oma can take him instead. I started to prep him on Saturday for going to school. If I had started too much earlier he would have been disappointed each and every day he didn't go. I had hoped to make an experience book ahead of time, but I settled for several books about school. It certainly prepped him for today. Oma took some great pictures today, and I will now make an experience book with pictures of him in it.

Reportedly there were few tears, and Lucas enjoyed playing in the play kitchen and with the train table. It was an abbreviated day, but I would call it a success.

This morning when I asked him who he was going to play with, he answered Nolan, and two of his teachers from John Tracy. Although it still breaks my heart, I'm excited that he still has strong, positive memories from our 3 week adventure in Los Angeles.

Lucas won't be back to school until Friday, because we have an appointment at CHOP on Wednesday. I can't wait to see what the rest of the school year brings for our little Lucas!

eternal gratitude

2010-09-19T19:05:00.000-07:00

We will be forever grateful to the founder of the cochlear implant, Graeme Clark. This week he won the international Lister Medal, which is one of the most prestigious honors a surgeon can receive.

This man has transformed the lives of hundreds of thousands of people around the world with this innovative technology. If you asked me 10 years ago what the best medical invention of the twentieth century was, I would have answered the contact lens, because of my personal vision needs. Now, of course, I know without any doubt that it is the cochlear implant. Not a single day goes by that I don't marvel at Lucas's ability to hear, to understand me when I speak, and to speak for himself. Although his success is certainly not thanks to the technology alone, it would absolutely not be possible without it.

At this summer's CHOP picnic I spoke with a Cochlear Corp rep about the annual Cochlear celebration. She mentioned that they fly Dr. Clark to the celebration every year. I hope to attend this event some year when Lucas is older, especially to meet this extraordinary man and thank him for changing Lucas's life.

You can read the full article here. I love reading about his inspiration for inventing this technology (his father), and how he finally figured out how to physically make the implant happen (with blades of grass in a shell while at the beach). I hope you can get through it without crying, because I certainly can't.

transitions

2010-09-12T19:12:00.000-07:00

So much to write about, so little time.

We are in a time of transition right now in our family. Nate and I have returned to work full-time, Lucas starts preschool 1 week from tomorrow, and we move in less than 2 weeks. Little Lucas is not sleeping so well, and I wouldn't be surprised if it lasts a few weeks until we get settled into our new home.

The other night he woke up and toddled to the door (which he can't open) and said in the most clear, pleading voice: "Mommy, open the door, please." He repeated it several times. How can you resist that? When I opened the door, he said "I want sleep Mommy's bed." We don't do that very often, but I decided to anyway. He was not happy just sleeping in between us though, he insisted that I have my arms wrapped tightly around him. It was super sweet, but I realize that it's not normal behavior for him. All of these changes are taking a bit of a toll on him, I believe. And we haven't even started next week yet, when he starts school, has CHOP appointments, sleeps at Oma's house and moves to a new house. It won't be pretty, but this too shall pass.

We've been working hard on PT goals this month, which include jumping and doing steps independenty. We've spent lots of time at the playground, and I signed him up for a gym class through the winter. He can finally step between our dining room and our family room without holding on. Yay! Check it out! He's pretty proud of himself.

He continues to make language and speech strides, and I just get so fascinated watching him acquire new language and grammar structures. Can you say linguistic geek? I'll save those updates for another post.

For now, wish us luck with our move. We will have more time to ourselves after we move, right? We can only hope.

speech sample

2010-09-03T20:37:00.001-07:00

When we were at the John Tracy Clinic this summer, we had the opportunity to look at Lucas's language skills with more depth. I had stopped keeping track of all of his words, because there were too many to count. But, with the help of one of their vocabulary books, we counted how many receptive and expressive words Lucas has. We came up with close to 500 expressive words, and 900 receptive words.

At a chronological age of 2 years 8 months, and a hearing age of 1 year 8 months, here is a speech sample of Lucas. I just love the Bill Martin / Eric Carle bear books (brown bear, polar bear, panda bear), but I especially love Brown Bear, Brown Bear, What Do You See?, for its simple animals and colors. When I read this to him, I pause to let him fill in the blanks, then I let him read the entire last page. I think it's great that the books are always summarized on the last page. He just belts it out, so I decided I needed to get it on video.

I just love his sweet little voice, and his intonation and enthusiasm for what he's saying. It's not exactly a random language sample, because he's just making a running list of images he sees. But, I think it gives a good glimpse at how well he speaks. I think it's so cute that he adds "y" to most of the animals (ducky, froggy, etc.). I'm not quite sure why he says "black fish" instead of "black sheep", but "sheep" is actually the first word he says on the video. There are still a few articulation substitutions that he makes (doddy, instead of doggy), but he's not even 3 yet, so we're just going to wait for some of the later sounds to emerge. You can also see him sporting his new blue and white hearing aid mold (just in time for Penn State football season). It fits so beautifully and doesn't give feedback at all now. We will continue to encourage him to wear it, to stimulate that auditory nerve and see what it can do for him!

We are incredibly, incredibly proud of him and how far he's come. We never dreamed in a thousand years that he would talk this well, this soon, or even ever. To say that we are eternally grateful for this life-changing technology is a huge understatement. I still marvel every single day.

Here.. We... GO!

2010-08-26T20:16:00.000-07:00

Tomorrow is a big day. Tomorrow is the first meeting in preparation for Lucas's transition from Part C (early intervention) to Part B (school-age) of the federal government's IDEA law (Iindividuals with Disabilities Education Act), enacted in 2004.

The purpose of this meeting is to discuss the transition process, discuss a transition outcome, and develop a transition plan, which includes a Multi-Factored Evaluation (MFE) and an IEP meeting before Lucas turns three in December.

I am prepared with my (full) 3-inch binder, containing all of Lucas's reports and relevant information, and statements about our hopes/dreams, concerns, current supports, upcoming appointments, and plans for him when he turns 3, as requested, as per the agenda we were sent.

I'm a bit nervous, but I'm bringing a special someone along to be an extra set of ears. She's the best of the best. (Thanks, you-know-who)!!!

Here's what the front of my binder looks like.

I made the word splat using a web 2.0 application called Wordle. It's very user-friendly, so check it out, if you're interested!

I'm still working on my binders for everyone at the actual IEP meeting, which is still a few months away. I have lots of great ideas, thanks to JTC, Drew, and Nolan. That binder will be unveiled later this fall.

For now, wish me luck!

a matter of semantics

2010-08-23T19:33:00.000-07:00

I did not take this one, for the record...

In the past when people have asked me what's on Lucas's ear, I usually would tell them that it's a cochlear implant and that it helps him to hear. I also typically use the word help with children, because it makes the most sense to them.

I've been thinking about it lately, and I don't believe that the word help does the cochlear implant nor profound hearing loss much justice. The cochlear implant doesn't just help Lucas to hear, it allows him to hear. Without it, he hears nothing. Period. There's no helping involved. Helping is like being half-way done and someone lending you a hand. Hearing with a cochlear implant is like going from zero to 95 with the attachment of a magnet. It's pure allowance.

So, today when the cashier at the coffee shop told Lucas she liked the flashy thing on his ear, then proceeded to ask me what it is, I told her it's a cochlear implant, which allows him to hear. She then asked me if he can hear without it. Nope. Then she asked me if he was deaf from birth, and commented on how amazing technology is these days (INDEED). She thanked me for sharing (which was nice). Conversation over and mission accomplished.

I guess it was a matter of semantics.

the last days of summer...

2010-08-22T13:33:00.000-07:00

We're soaking up the last few days of summer, and trying to fit in some last minute activities before we start the school year. On Friday, we visited the Please Touch Museum in Philadelphia, which was pretty phenomenal. Lucas thoroughly enjoyed himself, as did Oma and I. I scored a great deal on Living Social (daily deals @ up to 90% off) for tickets to the museum, and am so glad I did. Here are some pictures from our day!

Yesterday we joined our friends and visited Lake Tobias Wildlife Park. When we visited last year, Lucas wasn't even walking yet. Time has really flown! The highlight again this year was definitely the safari tour, but Lucas enjoyed all the animals. We saw lions, tigers, bears, monkeys galore, zebras, ostriches, alligators, capybaras, wallabies, prairie dogs, emus, llamas, and more! Check this place out if you're ever in Central PA!

we tried to warn him...

I hear crickets

2010-08-16T19:16:00.000-07:00

my boy got a buzz

This week I've been thinking a lot about those first few weeks after Lucas was activated, and how we spent all of our waking moments connecting sounds with meaning. It was absolutely amazing to me to watch him make those connections, and I happily chronicled those moments on video and on this blog. Check one of my favorites out here. We're at a much different place now, watching his expanding expressive vocabulary each and every day. But, we haven't forgotten where it all started.

As we learned at JTC, there are 4 levels of auditory development: detection (presence/absence of sound), discrimination (difference between 2 sounds), identification (recognizing/labeling sound) and comprehension (understanding meaning of sound). Since Lucas is speaking in 4 & 5 word sentences, he has made his way through those 4 levels pretty well by now. But, we still always revert to identifying sounds, like any good AV parent. I still always point to my ear when I hear a new sound and say "I hear that". Lucas now points to his ear and says "I hear" when he hears something new too.

I do have a point here.......... Lucas detected, discriminated, identified and comprehended a new sound the other night, when he heard the little creaking of crickets outside on a balmy summer night. He laughed his giddy little giggle when I explained to him what he was hearing and that they were little bugs "singing" in the bushes. Then, when we were driving home from my parents house, Lucas asked to "hear crickets", so I paused just a little longer at a stop sign, put down the windows and just sat and listened to the crickets with him. In that minute I paused and let it sink in that Lucas can hear the crickets and he loves it. It makes it all worth it. It's the little things that we don't take for granted anymore.

We haven't forgotten where we've come from with Lucas, and we're oh so happy about where we're going. The journey to hearing with a cochlear implant is constantly changing, evolving, moving. It's never stagnant. And it's oh so exciting.

final thoughts on our JTC experience

2010-08-09T20:25:00.000-07:00

at the beach in Santa Monica; photo courteous of Leah

Wow! Today marks 19 months that Lucas has been "hearing"! I just noticed at the top of the blog. It's been worth every moment.

I wanted to write down some final thoughts about our experience at the John Tracy Clinic this summer. First off, I can report that my crying episodes have just about stopped. I think after a week we are finally back into our home routine, and I am less sad for Lucas. It actually makes me smile when he mentions his friends & teachers, as opposed to cry. Big step. Lucas has taken almost an entire week to re-adjust to east coast time. I think next time we fly to the west coast we'll be taking the red eye back.

This past week I've had the opportunity to let our JTC adventure sink in. I've gotten to tell others about our magical 3 weeks in LA. I've also gotten to see others' reactions to Lucas's progress over the past month. I didn't really expect Lucas to make big gains in only 3 weeks... but, he did. Here's what I've noticed:

1. His sentences are coming out more complete, and now include many more verbs. He's using verbs like have, want, need, to express his needs. He's also using 4 & 5 word sentences consistently. I think our favorite sentence in LA was at the aquarium when he said, "Come back orange Nemo, please." We counted the number of words on our fingers right then and there, and wrote the phrase down because we were so excited.

2. His use of noun articles like the, a has increased. Where he used to only say "open door," he now says, "open the door."

3. His expressive vocabulary has increased tremendously. The deliberate exposure to vocabulary in the classroom coupled with some great outings to the beach, zoo, aquarium, children's museum, science center, etc., all really improved his vocabulary. We will continue to provide him with language-rich outings.

4. He sings all the time now! Before we left, he would "sing" itsy bitsy spider, happy birthday and that was about it. I would venture to say that he learned about 20 new songs/rhymes, and he just belts them out whenever. I'm glad that I learned them too, so I can help facilitate them. The song packets & CDs they sent home with us help a lot too. When I ask him what he wants to sing, he always answers "slippery fish." I think it's my favorite too.

5. His social skills have improved. I've always thought that Lucas had pretty good social skills, but after spending all day long for 3 weeks straight with the same 6 kids, he really learned how to interact with peers of his age. I see him initiate little "conversations" with his friends, and even random kids at the playground. Today I heard him tell a little girl "show me" and grab her hand to lead her where he wanted to. I was so thrilled with the age-appropriateness of his behavior. Social skills are often tough for kids with hearing loss, but he really seems to be thriving.

6. Lucas has transformed from a toddler to a preschooler right before our eyes. He made tremendous growth in 3 weeks in terms of separating from us. I believe it was a huge step for him, and will help him in the coming years with entering school. I believe that JTC taught us to interact with him more as a preschooler and less as a tot, which will in turn encourage more sophisticated language usage.

7. Lucas's use of spontaneous, creative responses to questions has appeared. His most amazing SLP asked him on Friday, "Where's your car?" She was referring to a little motorized bike we have inside. He thought about it for a moment and responded, "It's outside." She then asked, "What do you do with your car?" He paused and answered, "I drive it." Conversational exchanges are definitely emerging. When we first started to work on questions & answers with him, we taught him some rote phrases. Q: "How are you?" A: "I'm fine." Q: "What's your name?" A: "I'm Lucas." Q: "How old are you?" A: "I'm 2." Now he's answering questions spontaneously.

Besides getting Lucas a cochlear implant, I believe that spending 3 weeks at the John Tracy Clinic was the very best decision we have made for our family. It brought us closer together, and gave us a real sense of empowerment that we will be the biggest factor in Lucas's outcome. We have so many tools to use as a result of the program, and we've made many life-long friends from all over the world. We will be forever grateful to JTC, and their dedicated, professional, hard-working, very giving staff. It is a magical place there. I'd like to bottle it up and carry it with me everywhere. If you can make it happen for your family, do it. You will not be disappointed.

So much for an end to crying episodes.

re-adjusting

2010-08-02T21:11:00.000-07:00

Well, we're home. Yesterday was a long day of traveling, but we made it home to our beds by about midnight. Unfortunately, Lucas is still on west coast time. Last night he went to bed at 1 AM (10 PM), woke up at 10 AM (7 AM), napped from 3-5 PM (12-2 PM), and wouldn't got to bed until almost 11 PM (8 PM). The west coast times don't sound quite as ridiculous. Hopefully we can get his schedule situated soon!

I bet the halls of JTC were empty this morning without the pitter patter of little bionic kid feet and the coffee brewing for knowledge-hungry parents. Lucas still asks about his teachers & friends all the time, and it makes me cry. Tonight before bed he said bye-bye to everyone in his class. I think he gets it. But, it's hard for me not to be able to take him to see his friends.

We're trying to adjust to the super humid weather around here. I now understand why Southern California is so densely populated. The weather is just spectacular. I feel like I live in a tropical rain forest without the fun rain forest part here in the northeast.

I think it was easier adjusting to life there than re-adjusting to life here. I will admit that it was comforting to get back into our crossover at the airport and drive home; it was comfortable to sleep in our own bed; it was exciting to see our cats & family. But, it's back to reality. It's time to buy a house (since ours is sold). It's time to get ready to go back to work (that's school for us). It's time to seek another opinion about a 2nd implant for Lucas. It's time to get Lucas a new earmold for his hearing aid. It's time to reconnect with friends and family. It's time to prepare Lucas for preschool. AND... it's time to put everything we learned at JTC into practice. Since it's our goal to "integrate listening into our child's personality", we must now integrate our new skills into our daily routines. Like I said at support group one day. "We're not going to change what we do as a family, we're just going to change how we do it." Let's get this party started.

bidding farewell on day 15

2010-07-30T14:58:00.000-07:00

I think today at the John Tracy Clinic was the shortest Friday of all, because it just flew by. It was wise for me not to wear any makeup, because the tears flowed freely. We enjoyed our last circle time with our kids, had a few closing remarks from the wonderful people who organized our adventure, then had a support group meeting with the entire group, where we were given the opportunity to say our closing remarks. We then went to a lovely closing ceremony where we all got certificates and some closing remarks. We picked up our kids, headed to the big tree, and had one last photo taken. Then we said our farewells.

We all expressed open door policies to everyone in the group, so there might be some future reunions in various parts of the world. But if not, we will all stay in touch through facebook or e-mail or some other media. One thing's for sure though, we will never forget the friendships we've forged over the last 3 weeks. Living together in the same apartment building and spending valuable time on the lawn in the evenings brought our lives together for these 3 weeks with one common theme - to help our d/hh kiddos reach their fullest potential, and make sure that we are the most informed part of that equation. We especially cherished those evenings on the lawn when our kids could just be kids without any explanations or funny looks and we could talk about anything we wanted, including hearing loss.

We've said our goodbyes, expressed our immense gratitude and now we are packing and cleaning up while Lucas takes a nap. We are off to a hotel for the weekend, and we fly back on Sunday. It feels strange to leave our home-away-from-home and go to a hotel. We feel happy and empowered to take on the world and spread what we've learned. As the tip of the day said today:

day 14, our last full day

2010-07-30T08:08:00.000-07:00

I can't believe we're here already - the last full day. We've been kind of trying to prepare Lucas for going home, but it's been pretty tough on me. At school today, I saw that they made a poster with a car and an airplane going towards a house, then each of the kids put their picture next to which way they're getting home. Lucas talked about going on a plane when I picked him up, so he at least knows something is up.

This morning we had a session on phonological speech levels and how to give optimal conditions for carryover of speech skills. We were encouraged to stay positive (not: no, you're saying that wrong, but rather: listen, mine's different) when correcting words. Also a great way to correct words and put them back into the auditory loop is just by repeating them correctly in a meaningful context.

We had our last small group support group meeting.

We ate lunch for the last time in the sunrise courtyard with our blogging buddies. Then we met with Lucas's SLT to review his testing results and get a copy of a draft report. The report looks amazing, and is very detailed. I can't wait to get the final copy in a few weeks!

This afternoon's session was on supporting siblings & family relationships. Although we don't have a sibling for Lucas (yet), it was interesting to learn about some of the difficulties that typically developing kids have when they are the sibling to a special needs brother or sister. I will keep my notes handy for the future. We also got some suggestions on children's books about kids with CIs and hearing loss.

Our last session (ever... sigh) was on cognition. The classroom teacher who presented it did a really great job of giving concrete examples and showing a video of her class to illustrate her points. She mentioned the scary statistic that if children don't develop a language system (oral or sign) by age 5, they will likely have cognitive impairments.

We ran some errands after school, and then spend the rest of the evening on the lawn with the families. Everyone stayed out later than usual, soaking in our last evening together. I won't be wearing any makeup tomorrow, because I'm anticipating a lot of tears.

an academic day 13

2010-07-29T23:27:00.000-07:00

We started our day off with an appointment with audiology. We got some great results last time, and this time, she wanted to test Lucas's left ear with the hearing aid. Much to our surprise (and delight), Lucas got some measurable results while aided. He still doesn't hit the speech banana, which means that he can't hear any speech at all, but he's definitely getting some environmental sounds with it. He's still an excellent candidate for a 2nd cochlear implant, but it's very exciting to us that his hearing aid may be able to help a bit! When we get home, I'm going to make an appointment with our local audiologist to have a new earmold made. He's also been tolerating the aid pretty well. We will continue to encourage him to wear it at home.

We had a very academic schedule today, with four lectures. The first was about social interactions and the child with hearing loss, then phonetic speech level, then advanced auditory skills and then mainstream & inclusion.

Social interactions and the deaf child was interesting. Many of the social skills that hearing peers develop are not as natural for hearing impaired kiddos. We were given a checklist to reference and use to see how our children are doing socially. At this time, we feel Lucas has some pretty great social skills, but we have some things to work towards as he gets older.

During the second lecture on phonetic speech level, we learned that speech is an acoustic event, that we speak BECAUSE we hear, and that we speak WHAT we hear. So... it's important that our hearing impaired kiddos are properly amplified and that we acoustically highlight what we want them to hear. Practice sometimes makes permanent! We learned that all speech sounds can be taught and acquired through vocal play, and that we may not ever need to do speech drills with our kids. Lucas's SLT also conducted some speech assessments on Lucas, so we know exactly which sounds he can produce, which ones are still emerging, and which ones he cannot yet make.

The first afternoon session was on advanced auditory skills. We learned the four parts of auditory training are detection, discrimination, identification and comprehension. We learned 11 principles to auditory training, and were given a checklist of auditory skills to track our child's achievement, that we can continually reference.

The last lecture was on mainstream and inclusion, which we are very interested in. Although we are not even close to ready to think about Lucas entering Kindergarten, we are able to apply much of what we learned to transitioning him to preschool right now. We also got a helpful list of skills that hearing-impaired students need to succeed in the mainstream, and ways parents can help them. Mainstreaming is what we're working towards for Kindergarten.

After school we met with Ms. B., Lucas's classroom teacher. She is so wonderful, and we enjoy talking with her and hearing little anecdotal stories about Lucas. She really encouraged us to keep doing what we are doing (and more!). She seems very pleased with Lucas's PLOP (see yesterday's post) and feels that he will benefit from a preschool placement this fall. I'm so glad I have one lined up, you have no idea!

Lucas, of course, fell asleep after school today as soon as we got home, because he didn't nap at school. We let him sleep for just a little, then we headed to our favorite playground. We had dinner with some other families and then played on the lawn. Thursday will be our last full day.

day 12 and the IEP

2010-07-29T08:26:00.000-07:00

I'm a little behind with my posts, but I'm trying hard to catch up. Tuesday was one of my favorite days that we've had so far. Today during morning circle time, Lucas got to be the teacher's helper. I think it's his favorite time. He certainly enjoys the attention. We started the day with support group and a lively discussion about the film that we saw yesterday and the meaning of the word "deaf" to various families.

Then we were off to participate in a school age panel of two successfully mainstreamed boys and JTC grads. This was the highlight of my day. My tears flowed, and I again hung on their every word. What struck me most was the sense of normalcy that these boys have. These early years are so full of wonder, doubt and simply the unknown. The boys were articulate, smart, funny, and oh so normal. Don't take that word the wrong way. I just mean that their hearing loss is just a part of who they are, what they do, what they like. It no longer drives everything they do, like it seems to when they're young. The one boy even said (when introducing himself): "Basically I lead a normal life and I carry my own weight." One interesting tidbit of information I learned was that the one boy shared that he doesn't know how loud he's being when he talks, so sometimes he has a little cue with his mom (that he came up with) to tell him to turn it down a little bit. They talked about their experiences with FM systems - one likes using it, and one doesn't. It was also interesting to hear that when they listen, they have to try to concentrate on one voice so that other sounds don't become too distracting. I thoroughly enjoyed the panel.

We checked in on Lucas before our afternoon sessions started, and but 1 of the six kiddos decided to take a nap for the second day in a row. I hope it's not a foreshadowing of the rest of the week! The topics for the afternoon were US laws and deafness and the IEP, both of particular interest to us as we embark on our first IEP adventure in the next few months. We were given resources and websites to reference and even saw a role play of what not to do. We got to see examples of binders that parents put together about their children for the IEP meeting. My wheels are turning as we speak and I prepare for this next journey. We learned lots of acronyms, my favorite being PLOP, Present Level Of Performance. That is one of the reasons why we're here, to determine his PLOP, so that we can move forward with plans.

We finished the day with a meeting with his SLT. We figured out that Lucas will work better if he's in a room with no distractions and has a snack to munch on. So, this session went much better.

Tonight we decided to head to Santa Monica again. We didn't hit the beach, but walked along the promenade and out to the pier. He enjoyed some of the little rides. We got to watch the sunset too.

an intense day 11

2010-07-28T16:23:00.000-07:00

Like the post's title says, today was a pretty intense (but good) day. Lucas barely even blinked when we left, and he's not even attached to his blanket anymore. So EXCITING! The first session today was on behavior management for children with hearing loss, which I listened to very intently. Lucas is at that ripe old age of 2 1/2, where he starts to have his own ideas about the way things should be, so I was looking for some tips. The first tip I gained was prevention, prevention, prevention. If you can prevent the behavior by identifying triggers, adapting the environment, and rewarding good behavior as opposed to always focusing on negative behavior, it can cut down on behavioral issues. The second tip I got was to maintain realistic expectations based on a child's developmental level and needs. Expecting Lucas to sit still for 15 minutes while in circle time is not a realistic expectation, for example. We also learned 8 steps to effectively managing time out, and especially that it should not be seen as punishment per se, but rather as a chance for a child to calm down and self-regulate after performing an unwanted behavior. We made two experience books, one on positive behaviors and one on negative behavior for our children. This session was most beneficial to me!!

After a short break (and a little bit of spying on our kids), we gathered again for a session on expressive language. Since Lucas is doing so well with his expressive language, this lecture was particularly interesting to us. We got lots of ideas about how to encourage further, more sophisticated expansion of expressive language, such as always expanding what you say and adding new phrases, and exposing children to a variety of language environments.

We finished the day watching a documentary called Sound and Fury. We watched it during lunch, and then watched the follow-up to it, which was very helpful. I would go as far as to say that this film is an important part of every family's journey to a cochlear implant. Nate and I saw the film shortly after Lucas was implanted, and there are a few scenes that left a lasting impression. I think it's so important, because it portrays many different perspectives regarding the CI. It portrays deaf parents of deaf children, deaf parents of hearing children, and hearing parents of deaf children. The original film kind of leaves you hanging, but after seeing the follow-up, the story comes full circle. I recommend it if you haven't seen it. Although it is 10 years old, it still provides valuable perspective.

Someone in the group shared a quote today that she read somewhere that had inspired her - "dare to have the conversations with your hearing impaired child that you would have with your hearing child." It was kind of a reminder to continue to dream big.

We spent time with the other families out on the lawn tonight. Our days with them are winding down.

LA weekend fun

2010-07-25T23:00:00.000-07:00

We enjoyed a sunny weekend just hanging around LA! On Saturday we visited the Los Angeles Zoo. The zoo was super hilly and a lot of walking, but we had a great time. Lucas really soaked up a lot of great zoo language. He especially liked the giraffes and primates.

We spent a good 4 hours there, and were planning to see a few other attractions in Griffith Park - Travel Town and the Griffith Observatory, but alas, our little Lucas fell asleep. We kind of knew it would happen, and were glad he did, because he was pretty grumpy by the time we left the zoo. So, instead we drove around the park and looked at these sites from a distance, and then headed to Hollywood. We did a little sightseeing by car while Lucas slept. It was the perfect combination.

We got pretty close to the Hollywood sign. The GPS came in very handy again. I typed in "Hollywood sign" and it took us to this random neighborhood. We kept going and couldn't see the sign any longer. Somehow the GPS knew the exact last spot where you can see the sign before it disappears out of sight because of the mountains. Pretty cool, I thought.

Today we slept in and then went to a picnic hosted by a generous donor of the John Tracy Clinic. There was an In-N-Out burger truck there, with made-to-order burgers. They even made grilled cheeses for people, like me, who don't eat burgers. It was really yummy. There was also an ice cream truck with about 20 different hand-dipped flavors, a clown magician, face painting, games and lots of fun! It was a lovely afternoon spent with all the families and staff at the clinic.

Lucas got his face painted to look like a kitty cat (his choice). He sat so still!

After the picnic, we went with a few other families back to the California Science Center. We think we might still go back another time, because there's even more to see! What a great little gem in JTC's backyard! We had hoped Lucas would fall asleep on our walk there, but instead he fell asleep on our way back, which made bedtime interesting.

But, here I am, and Lucas is asleep. He excitedly asked me if he was going to see his friends tomorrow. I'm just wondering what we're going to do next week when he wants to see them then too. We just won't think about that just yet.

Friday, day 10

2010-07-24T22:36:00.000-07:00

Fridays at the John Tracy Clinic always go by so quickly! Since we are done at noon, and the kids neither eat lunch nor nap there, the morning just flies by. After spending the first hour with Lucas in his classroom, where we practiced the tip of the day (sandwiching a word by always beginning and ending with auditory-only input) we attended a session on informal speech acquisition. We discussed such ideas as using vocal play and the learn to listen sounds to encourage language acquisition.

We also got to see a video of Lucas and us working with his speech and language teacher. JTC has done a really great job of using our kids and our sessions with our SLTs to illustrate certain concepts that they are teaching us. They showed an example of an experience book that Ms. M. made for Lucas about locational prepositions, using his favorite stuffed bear, Knut to illustrate various locations. Nate and I were really nervous to see the video, because of how Lucas has been working for M. The presenter showed a segment of the video, where Lucas is completely off task, talking about leaving the room to dump the trash from the trash can into a trash truck (he saw one on the previous day behind his classroom), instead of talking about Knut sitting next to the trash can (as was in the book). Whereas Nate and I were a bit frustrated that Lucas would not stay focused on the book, she gave it a positive spin, showing how much more language the book led Lucas to use. It's always nice to have a different perspective.

We finished our short Friday with support group, where we were given the opportunity to write love letters to our kids. The idea was to write a letter to the older children in the sibling program, and those letters will be read aloud to the siblings next week. If you don't have a child in the sibling program (like us), then we wrote a letter to our children in the program. Nate and I both sealed ours up, and I will tuck them away in Lucas's baby book for a time when he is old enough to read them himself. I will be interested to read it myself again one day too.

After school, we had half a day to explore, but Lucas desperately needed a nap. So, he took a quick nap, then we headed to Exposition Park, which is within walking distant from our apartment, to visit the California Science Center. We were thoroughly impressed by this free museum. There's a rather new exhibit on the world's Ecosystems, and there is so much to do there for little ones like Lucas! One of the areas is a Kelp Forest, with a glass tunnel to walk through hosting kelp, sharks, eels and various fish. It was like a mini aquarium. Lucas thought it was pretty cool too.

We can't wait to go back next week, because we didn't have enough time to see it all. We made a trip to Yogurtland with one of the other families then and called it a night. We're really looking forward to next week, although we're a little sad that our time is winding down. Some topics that we're looking forward to are a school age panel of d/hh kiddos, U.S. laws and deafness, the IEP, and mainstream & inclusion. Stay tuned!!!

crafty Thursday!

2010-07-23T23:30:00.000-07:00

Lucas continues to not mind when we separate from him for school in the morning. It's almost a little offensive... just kidding. Today's schedule was a little bit switched up! We started the day with support group and a great idea sharing time. Then we had a session on children's books and experience books. It was very hands-on. Although we didn't completely create any experience books (due to lack of time), we saw many examples of them and made the skeleton to create one! Now we just have to add content.

Both books are pretty unique set-ups. The large, colorful one could be used to teach pre-reading skills. Each 1-inch flap that you see can have a sentence written on it that describes the picture. The example we saw was with dinosaurs. I'm still trying to think of a good idea for this one. The second book is made out of paper "lunch" bags, which are alternated and folded in half. The unique aspect of this book is that it provides pockets. Each page of the book could have a category, and then inside the pocket could be items (from clip art or something) that fall into that category. Some categories I thought of are: clothing, farm animals, beach, grocery store, tools, etc. This particular book only has 3 pockets, but you can just use more bags to create more pockets. I'm looking forward to playing with these books when we return home!

There was a Scholastic Book Fair all day today, and although it was tempting, I refrained from buying any books. It's not that I don't love books (or to shop for that matter), but I just didn't get any. I got some great ideas though! John Tracy Clinic was selling items with their logo on it, and I bought Lucas 2 hats. Too bad his head is too big for them. I will give them away... or maybe Oma can make them bigger? (That's a hint...)

The afternoon lecture was on speech and assessments. It was fun for Nate and me to get a refresher on linguistics and the International Phonetic Alphabet (IPA) that we had to utilize in grad school. We were given a chart with all of the speech sounds and at what age they are typically acquired by children. Some sounds are not expected to be solidified until a child is almost 10. I think some parents were breathing a sigh of relief, including us! It helped put into perspective speech why some kids struggle with some sound production.

We finished the day with part of a lecture on literacy and had an appointment with Ms. M., Lucas's speech and language teacher. He was a little better for her, and she started to assess his speech production so that we have a good idea about which sounds Lucas can produce and which are still emerging. I look forward to seeing the results!

This afternoon we decided to spend the afternoon at Hermosa Beach. Lucas enjoyed himself, as usual, even if he was very cold after swimming. It's a good thing his daddy likes to take him into the ocean! We saw a blimp, and Daddy buried him to his chin in sand. He thought that was pretty cool.

On the way home we found some more great Mexican food at a small restaurant called El Gringo. Best of all, Lucas ate his entire dinner and sat by himself the whole time. That hasn't been the norm lately, so we were delighted.

half way point

2010-07-21T22:16:00.000-07:00

Today marks our half way point, and I just can't believe it! We had another busy day of learning, analyzing and sharing. We started our day with an appointment with one of the audiologists. I was concerned that Lucas would not cooperate in the booth, based on how he has been working for Miss M., but on the contrary, we got the best results we've ever gotten! I attribute that largely to the fact that JTC utilizes very skilled test aides in the booth who work closely with the audiologists to keep our kids focused (and entertained) on the task at hand. She had 6 different activities to do with Lucas that really kept his attention. Lucas showed aided responses of 20-25 dB across the board, which are results that we haven't yet seen. I'm so pleased.

She also tried to get some unaided responses from his left ear, but the results were varied, so we're going to try again another day. She did check his hearing aid though, and felt that it was set a little low, so she increased the settings a bit. We tried it on him again around 10 AM, and by the time we checked on him around noon, he had removed it, so I guess he still doesn't like it. I was trying to hold out a little hope that he might wear it if it was providing him with a little more benefit. We'll keep on trying. I can't really blame him though, if he's not hearing anything with it. He sure loves his CI though. He kept patiently asking for it in the booth while his left ear was being tested.

We were finished testing with enough time to participate in circle time with Lucas, then we said our good-byes and he didn't even CRY! What a big boy he has become in 8 short days.

This morning we had the amazing opportunity to listen to a panel of deaf adults speak about their experiences. I listened so intently to all of their words, and cried on occasion. I was most touched by the young JTC grad who is a senior in college. She was implanted as a child, and I just really hung on her every word, all of her experiences. Some of the insight I gained from them were tips on minimizing hearing difficulties. I learned that when in restaurants, they prefer to choose tables off to the side, with their backs to the wall, and stick with locations with ample lighting to facilitate lipreading. I learned that using the lapel mic from the CI kit can assist hearing in restaurants. I learned that while driving, they can't always hear an ambulance or where it's coming from, so they rely heavily upon visual cues to spot the flashing lights. Most importantly, I learned that they all want to be known as people first who have hearing difficulties, and not just deaf people. They don't like to let it define them. What a powerful 2 hours.

It was also my first experience with oral transliteration. An oral transliterator works with deaf and hard of hearing people to interpret communication. In contrast with a sign language interpreter, oral transliterators work with oral deaf people who don't use sign to communicate but utilize speech reading instead to access all information. The woman who transliterated sat right in front of me facing the panel and silently repeated (sometimes with gestures) what was being asked by the audience and what was being said by other members of the panel. One of the panel members also talked about her experiences using a transliterator and those of her daughter. It was fascinating to learn about even more options that our kids can have access to, if needed.

This afternoon we had another guest speaker - a local ENT who has been speaking to the JTC summer session parents for several decades. Amazing. He spoke about the importance of maintaining good ear health for our kids and answered many questions. He also shared his experiences as a father of a child with hearing loss. His perspective was very unique. We were able to ask him a question about Lucas's preaurical sinuses and whether we should be concerned about them. He further explained what they are, and how they are removed (if necessary) in more depth than we've ever been shown before. It was very helpful.

I'm looking forward to a session on children's books and experience books and a Scholastic book fair tomorrow (among other things)!

JTC, day 7

2010-07-21T21:35:00.000-07:00

This morning at the John Tracy Clinic we started with an appointment with Lucas's speech & language teacher, Ms. M. It was not the best session. Lucas has not been working for long periods of time for her, and seems to get off task pretty quickly. It's very strange, considering how well he works for his teachers at home. But again, he's in a new environment, so we take what we can get. We did get to talk to her alone about some of the testing that she has been conducting with him, and the results were pretty great. Expressively, he's testing at 2 years 6 months. And guess what, he's 2 years 6 months. This test is normed on hearing peers, so we're very pleased with those results. In terms of his receptive language, he only scored at 1 year 9 months according to the test, but we all believe that he must not have tested well, because there's no way for his expressive to be so far ahead of his receptive. It just doesn't work that way. After our meeting, we excitedly went to listen to a local CI surgeon and audiologist. It was really wonderful that they were willing to lend their time to educate us.

We were able to send questions in ahead of time, and I prepped them with my question about implanting Lucas's left ear. If you'd like to read about why Lucas doesn't have a second implant, you can read about it here. Basically, his CI surgeon believes there is too great a risk of complication with a second implant for him, because of a complication from the first surgery. But, I wanted a second/third opinion. The surgeon took the time to draw us a diagram explaining Lucas's cochlear malformation (which heightens the risk), and explained exactly how he would go about the procedure to minimize complications. He then told us that in his professional opinion that he would still implant. That was exactly the kind of information I was looking for. This man was so humble, yet so confident. I wish he could implant Lucas. He was kind enough to give us some guidance on how to proceed from here, so that's what we'll do when we return.

This afternoon we had a talk on auditory learning, and ways to increase acquisition of language through auditory-only means. Then we finished the day with support group. We have begun to change the format of our support group meetings to a bit of an idea sharing time, and it got a lot more people talking, including me. I was able to share with the group how I waterproof Lucas's CI for swimming. Many other families were very interested in the setup. Like I explained here, it has been a most beneficial experience for Lucas to be able to wear his ear in the water.

This afternoon, most of the families headed to that amazing playground I mentioned yesterday. There's a water area that the kids really enjoyed. Lucas was especially happy to play in the water! Here are a few pictures:

Then one of the families organized a take-out meal for everyone and we all gathered in the 3rd floor lounge. Afterwards many families played on the lawn next to the apartments. It was a great afternoon with all of the families and kids.

week 2 begins!

2010-07-20T22:54:00.000-07:00

And week 2 begins! Thankfully Lucas settled back into his John Tracy Clinic routine quite nicely. We were concerned that the break of the weekend would affect his ability to separate from us today, but it did not. He woke up rearing a ready to go see his "friends", so we happily complied!

Today's tip of the day was to talk to your child like a sports commentator, to naturally talk about what he is doing, looking at or thinking about. Although we've always been told to narrate his activities, I've never thought of it as acting like a sports commentator before. Very clever!

This morning's session was on classroom acoustics. This topic was of special interest to us, because Lucas is about to start preschool. We learned some ways to optimize his listening environment such as eliminating flat surfaces in a classroom, using carpet to absorb sound, and eliminating frivolous sounds like an air conditioner or a fish tank.

We also learned about FM systems, both personal FM systems and sound field systems. All of JTC's classrooms are equipped with sound field systems, which facilitates listening for everyone. I don't believe that the preschool class for 2.5 year olds that Lucas is slated to attend in the fall is set up with a sound field, but I will have to check. Our other option is a personal FM for Lucas. Lucas's teacher would wear a microphone around her neck, and anything she says would be transmitted directly to Lucas's CI processor. Sounds ideal and great, huh? Yes and no. If it works properly, it will help him tremendously. But, the only way to test the functionality of the FM system with a CI is to reply upon the reporting of the child. We're not sure Lucas is there yet, despite his excellent expressive skills. Then again, he might be.

We missed the session on oral-peripheral motor structures and functions. Although this would have been informational (as are all of the topics), we have no concerns with Lucas's oral motor skills (feeding, speech production, etc.), so this was an okay time to miss. Instead, we had the opportunity to meet with a member of the counseling team as a couple. We had a beneficial session, and were thankful to take advantage of this service offered by JTC.

The other afternoon session was on sensory integration and behavior. I'm always worried about Lucas's behavior, but it was affirmed to me that most of it is just typical 2-year-old behavior. Additionally, I learned 2 very interesting points during the lecture. First was information on a study conducted on 48 hard of hearing children (all with varying degrees of hearing loss) all of which exhibited abnormal vestibular responses when tested. This was affirming to us, as several professionals have refused to relate Lucas's hearing loss to his balance issues, although we have always disagreed with them. Very interesting.

The second point relates to children with hearing loss often being more sedentary. It really makes sense. Hearing impaired kiddos spend lots of time in formal therapy, in the audiological testing booth, being asked to sit and listen, and being carted around from appointment to appointment in the car. Throw in some balance issues, which may cause kids to not want to run around and play, and you often have sedentary behavior. At the very least, this information has caused me to think about how much time Lucas spends running around and playing. I think it's a good thought to keep in the back of my mind.

Lucas was, of course, very happy to see us at the end of the day. It's always a nice feeling. :)

After school, I caught up on a wee bit of laundry and we headed to Ralphs to stock up on groceries for the week. In between we visited the most amazing playground with some of the other families, thanks to the recommendation of a mama from the first summer session. We will definitely be heading back there!

Unfortunately, this is round two of writing this post (somehow the other one never saved and wouldn't publish), so today's report will have to wait for tomorrow.

a beach happy weekend

2010-07-18T23:11:00.000-07:00

It was recommended that we take it easy this weekend, so that our kids are rested and ready for school on Monday, so we decided to spend some time at the beach. It got pretty hot this weekend, with a high of about 88 on Saturday. But, it didn't feel like 88 degrees. I've come to the conclusion that 88 degrees on the west coast and 88 degrees on the east coast are not created equal. I'll take west coast 88 any day of the week.

On Friday, our half day, we visited the Aquarium of the Pacific, just as planned. We spent a little over 2 hours navigating the 19 different habitats of the Pacific Ocean. Lucas spent a good portion of his time looking for Nemo, and he was pretty happy to encounter several Nemos...

The aquarium was a great language-rich experience, as we saw sharks, eels, turtles, sea lions, lots and lots of colorful fish, sea horses, jelly fish, starfish, giant crabs, among other things. We also learned that our little monkey (as a result of a "monkey see, monkey do" experience) can swing from a bar on his hands. We learn something new every day.

We walked around the Long Beach harbor a bit, then had dinner at Taco Surf in Belmont Shore. We're lucky to have a local tour guide to recommend such places to us. :)

On Saturday, we slept in (Lucas slept until almost 9:00!) and decided to go spend the day on the beach in Malibu. We enjoyed our drive north along the Pacific Coast Highway, with many breathtaking views. We did not spot any celebrities, although we enjoyed dreaming about who might live where. We stopped at Point Dume State Beach to set up camp. We packed lunches and spent several hours there. We also stopped at a little hardware store in Malibu and bought a beach umbrella. It was a very wise decision. Lucas thoroughly enjoyed himself in the "water" and "sandbox". It was actually there that Lucas was very clever with his newly learned songs. We sang "where oh where oh where is Lucas" and he responded, "right here in a sandbox!" So we sang that question to him several times this weekend and got many different answers like "right here in a white car," and "right here in Laurie's house". Lucas loved the sand and water. So clever!

It took us much longer to get home than anticipated, as we experienced the dreaded beach traffic on PCH. But, after showers and some relaxing in our apartment, we headed to Yogurtland. Oh my, that will not be the last time we visit there. 12 different favors of self-serve frozen yogurt, with 30+ toppings to choose from, at $.30 an ounce = lots of yummy (and pretty healthy) goodness. It's a shame that the closest one to us at home is in Florida.

On Sunday we decided to head to Pasadena (which is only about a 15 minutes drive) and visit the Kidspace Children's Museum. What a delight! We were expecting an indoor museum, but it was 75% outdoors! It's a good thing we were planning to go to the beach later and had brought Lucas's swim clothes along, because he had ample opportunity to romp around in water! Again, it was a great language experience, where Lucas learned about bugs and nature and had a lot of great hands-on experiences.

I'm so glad we decided to go! We left right after lunch to head to the beach, which coincided perfectly with his nap. We didn't hit as much beach traffic as yesterday, but we had trouble finding parking in Manhattan and Hermosa beaches, so we kept driving south and hit the beach in South Redondo instead. It was a lovely afternoon spent with Laurie and her hubby. And I still can't believe she lives that close to the beach.

We had a beautiful, relaxing weekend, and we are gearing up for week 2 at the John Tracy Clinic. Lucas woke up this morning asking "friends?" again. We read his experiences books before bedtime tonight, to familiarize him with his routine. I hope that tomorrow is full of smooth transitions for our little Lucas. He sure loves this place.

a short day 5

2010-07-18T22:24:00.002-07:00

Wow, I can't believe the first week is over! Today we were finished at noon, and it really flew by. After spending the first hour with Lucas in the classroom, we had a session on behavioral regulation in children, and then support group, which I really look forward to.

Since all of the kids and teachers were outside when I said goodbye to Lucas today, I decided to take some pictures of the empty classroom. I blurred out some names and faces, in case you were wondering why the pictures look a little bit funny. Since Lucas is a bit more emotionally attached to me, I say good-bye first, and then Nate says good-bye. I get the easy job. Nate also leaves more easily. It works.

If you want a really great explanation of today's session on behavioral regulation in children, please see Leah's blog. She always recaps our topics really well. I thought the topic was very interesting, although it, of course, makes me a little paranoid about Lucas's self-regulating behavior. But, I'm happy that Lucas seems to be doing pretty well. This week was not easy for him with separating from us, but each day got easier, even to the point where he wouldn't get upset and cry during transitions on Friday like he did the rest of the week. I also think that some of the behavior he exhibits can just be contributed to the fact that he is 2. If he were 4 or 5 and still not transitioning well, etc. I would be concerned. I'm happy to see progress right now though.

I wanted to say a few words about support group. On days 1 & 2, we met as a large group of 18 families, and were each given the opportunity to tell "our story". It was therapeutic in and of itself to hear all the stories - to find families with which we have very similar experiences, and to understand more where other families are coming from and the daily challenges they face. On day 4, we were split into 2 groups to make it a little smaller. On days 4 & 5, we really had an open forum to talk about whatever was on our minds. I just listened and didn't say much. Nate and I are at a much earlier stage of our journey than many of the other families, and still have so much to learn, especially concerning school decisions. Lucas is the 2nd to youngest of the entire group of 18 at 2.5, and hasn't yet transitioned to preschool age, although that will occur soon.

Week one as John Tracy Clinic is over, and I feel like it has just begun!

today is day 4

2010-07-15T23:10:00.000-07:00

Today's tip of the day at the John Tracy Clinic was "Good morning Lings!" It was a reminder to practice the Ling sounds (ah, oo, ee, mm, sh, s) with your child every morning to make sure that they are hearing all the sounds of speech. Although we do Ling checks at home, we never used to do them in the morning (but rather at bedtime), so that was a good reminder.

Today was Lucas's best day so far (and should have been). Earlier in the week, he was having trouble transitioning from one activity to another, but today wasn't as bad. He seemed to be slightly less attached to his blanket and bear today, even being completely separated from them at lunch. I really dislike that he's dragging them around with him everywhere, because he doesn't do it at home, but if it helps to bring him comfort, then I am okay with it. He has even taken a nap e.v.e.r.y d.a.y at school this week. At home, he will only sleep in his own bed, but there must be something in the air here that all the kids are napping! I snagged this shot really quickly while Lucas was sleeping:

I think that the experience books that they created for us to share with our kids about their classroom routines and teachers/classmates are really helpful to Lucas. Not only am I reinforcing what his day is like, but he can also talk to me about the pictures and tell me who his "friends" are. Here's a glimpse at what the books look like:

He apparently is quite a character in class, making up his own rules sometimes. The teachers told me that he would try to get me to come back sooner by counting to 3 and saying "mommy?" He also let them know that someone else had a dirty diaper the other day, by saying "I smell stinky diaper". If only he would tell on himself...

We're noticing an improvement in his vocabulary already. He announced "I'm ready!" before we left for the beach yesterday, and his sentences are coming out more completed, including filler words like articles and prepositions that he seems to usually leave out. The songs they sing at school are also sticking with him. Every morning during circle time we sing a welcome song, and Lucas is starting to sing it too! We sing "where, oh where, oh where is Lucas... (x3)", then he sings "right here in our circle". Thoroughly impressed. He also knows the names of all of the kids in his class. He even awoke this morning and said "friends?", as if to ask if he were going to go to school today.

Tonight before bed I talked about his day with him to see what kind of information he could provide and then I guided him through the other events of the day. He said "1, 2, 3 mooommy, daaaddy" (that's what they do at the end of the day to call the mommies & daddies back into the room to pick them up). It was pretty funny that that's what he decided to share with me.

Today in our sessions, we did a lot on audiology. We got a demonstration on how the hearing aid equipment works, the types of hearing tests that are done and how to read an audiogram. My heart was a little heavy today talking about hearing levels and audiograms. Although I was interested in and grateful for the information, I somehow still mourn the year Lucas spent without any sound (even with his hearing aids) because of his truly profound loss. Before implantation & activation, we never really got any behavioral results to plot on an audiogram. I always hoped that every time we visited the audiologist, that we might be able to fill in something as evidenced here, here, and here. Without his cochlear implant, I'm not sure Lucas would have ever learned to listen and speak because he has no residual hearing at all to use. None. It's just another reason why his CI is such an incredible miracle for him. Really, there is no other word I can use to describe it. It is a medical miracle.

Later in the day we learned about different language assessments that are performed on our kids, when, how and why. We had another session with Lucas's SLT, Ms. M, and he wasn't too cooperative (mainly due to it being at the end of the day and he being totally done for the day). I hope that next week is better for him, but today he just would not play a ling game, even by being bribed with stickers.

Tomorrow we are done at noon, and then we are off to Long Beach to visit the Aquarium of the Pacific. I can't wait for all of the great new language opportunities that will arise!

I read a quote posted on the wall from Mrs. Tracy today that I've been thinking about all day long, so I'll close with this thought: "Everything a child sees and hears. everything he smells, tastes and touches, everything he experiences contributes towards language." ~ Louise Tracy

rewind to day 3

2010-07-15T22:14:00.000-07:00

Sorry for no post yesterday, but I was totally spent. Since Lucas slept so poorly on Tuesday night, I was extra tired last night. When I put Lucas to bed, I fell asleep with him, and I didn't wake up again until late. I'm a bit more refreshed today. I think Lucas is adjusting to his schedule now, and his bedtime routine only took 1/2 an hour tonight!!! I still had to lie in bed with him until he fell asleep though. That's okay, I'll take it.

On day 3, Lucas separated a little bit more easily from us, and he didn't seem to be calling for me every time I watched him through the 2-way mirrored observation room. I was a little stressed out on Tuesday, because that seemed to be the case almost every time I looked.

We had sessions on receptive language, the anatomy & physiology of the ear (very interesting!), and the Parents Advise Learning Support (PALS) program. If you haven't ever looked into John Tracy Clinic's free distant learning courses for parents, and you have a child between the ages of 0 & 5, you should definitely do so. When Lucas turned 1, he got a special birthday letter, and every lesson we completed was followed up by a very personal e-mail. It's definitely worth your time, energy & effort, and I promise that you won't be disappointed.

We were also briefed about the sibling program. Although we have no other children (yet...), it was interesting to hear about all of the activities that go on with this program. It sounds like the siblings are getting just as much out of the school as the preschoolers. I'm so happy for the families with older siblings to have the opportunity to participate in this program!

The biggest thing that stuck with me today was the concept of "integrating listening into your child's personality." Obviously listening does not come naturally to our hearing impaired kiddos, and if we want them to acquire listening and spoken language, we need to do just that, to integrate listening into their personalities. I think Lucas is well on his way there, and I'm quite happy with that.

Tonight, we also went to Santa Monica to hang out at the beach. We stuffed Lucas, Leah & Nolan into the back of our Nissan Versa rental car and off we went to the beach! We all had a great time!

Then we stopped for *what else* but Mexican at Gilbert's El Indio. We really lucked out at this local gem, and it was most excellent. Thanks goes to Nate's iPhone for the recommendation and our handy GPS for getting us there. I'm not sure what we'd do around here without our trusty Garmin. It is very, very helpful. It's one of those gadgets you never knew you needed until you got one. Now I can't imagine traveling (or going on local Craigslist runs) without it.

We look forward to heading back to the beach this weekend!

JTC, day 2

2010-07-13T21:48:00.001-07:00

This will be a very short post, with more updates tomorrow. Lucas will not go to sleep. His day went pretty well, until he awoke from his nap and wouldn't stop calling my name. I think he's afraid I won't be here when he wakes up, just like this afternoon. He won't go to sleep with me lying in bed with him, in the bed next to him, or even rocking him. I'm taking a break right now, and Nate's on "get Lucas to go to sleep duty." But, I'm headed back into his room again soon.

This evening we enjoyed spending time with the families on the lawn next to our apartment. It was nice to get to know some of them better. Today at the John Tracy Clinic, we met with his speech and language teacher, and had an audiological consultation, in addition to support group and lectures on language acquisition, communication methods and bilingualism. It was definitely a full day. We're all pretty tired, and hoping that Lucas goes to sleep very soon. We'll see what tomorrow brings.

minor adjustments

2010-07-12T21:56:00.002-07:00

Day 1 at the John Tracy Clinic was very successful. We were a little worried about how Lucas would transition, but he did just fine (indicated by the fact that no one came to retrieve us). Lucas even took a nap during rest time. We'll see how day 2 goes! We were told today that sometimes day 2 is tougher than day 1, because the kids are anticipating the separation. We're still hoping for the best.

We learned a lot of introductory information today about what the next 3 weeks will be like. We were introduced to all of the staff, and got a brief history on the clinic, including the life of Mrs. Tracy. We were given a tour of the facility, which is quite large. We were given our intense schedule, which includes a parent support group, talks on various related topics, an adult & school age panel, guest speakers, sessions with speech, audiology and family counselors (those upon request), among other things! We were given breaks to check in on our kiddos through the observation booths. I took this picture through the window (Lucas is wearing yellow):

We are enjoying our time immensely, but are still getting used to a few minor adjustments...

1. We're living in a USC apartment, and I feel like I'm in college again (not a bad thing to me). We have to use our swipe card to get everywhere - the main entrance, the elevator, the hallways. We feel very secure though.

2. We're so glad we decided to rent a car for our entire stay. It's been well worth it already. But, this car's lights do not automatically go on, and this evening I drove half way home from my errand with them off. Oops. Thank goodness it was only beginning to get dark.

3. Although we don't completely live in the country at home, it's an adjustment to live in a big city, especially with a car. And the freeways are another story altogether. They are very efficient, but a little scary. I'm used to the Schuylkill Expressway, which is four lanes divided. Here, there are many 10 lane divided highways.

4. I'm used to being able to talk on my cell phone whenever I want to while I'm driving. Here in California, it's illegal to talk on the phone while driving. In PA, it's not. It's a good law, but I'm not used to it.

5. Nate and I are very accustomed to being able to speak to each other in Spanish all the time while we're in public, because no one knows what we are saying. Not here. We've opted for German, but Nate doesn't speak German that well, so we've opted for baby German.

6. Our little apartment is spacious, but I'm not used to one floor living. The door knobs are also the french door type kind, and Lucas can open all the doors, including the one to his bedroom. He scared me half to death when he came to our room at 4 AM and crawled into bed with me. But... I loved it. He can't do that at home.

Things to which we are adjusted:

1. good Mexican food

2. non-humid 70+ degree southern California weather

3. spending time with families who get what we're going through, and understand why we're here

4. special family time

In addition to all of the logistical information we learned today, I gathered two main points about the John Tracy Clinic. The first is that their services are free to all of their families, thanks to 5 million dollar annual fundraising efforts and donations. Isn't that amazing?!? The second is that the family is the most important component of JTC's philosophy. They know they can do wonders with our children, but if we don't carry through at home what strategies are utilized at school, then the efforts will have less effect. The parents are just as important, if not a little more important than the kids here. This is what sets them apart from the rest. I just knew it would be a special place.