Happy New Year!

On this, the first day of 2013, I find myself looking ahead to the new year and wondering what it will bring for our family. Hopefully more blogging.

Lucas just celebrated his 5th birthday. The weekend of his birthday fell exactly the way it did at his birth, so I did a lot of reflecting - the crazy blur that was his birth 5 weeks too early, and of course, all the health issues in the days and weeks to follow. If only I knew then what I know now, I could have saved myself so much heartache. The only word I can use to describe my feeling of understanding is perspective. Five years have brought me a lot of perspective when it comes to parenting and hearing loss.

I was home to celebrate with him on his big day (because it was on a Sunday!), and celebrate we did. We spent the afternoon at Dutch Winter Wonderland, with our dear friends who live down the street.

Nora is 14 months and is a really sweet little girl. I'm having so much fun watching her grow! Her natural language milestones are also incredibly fascinating to me, along with her acquisition of Spanish. We're teaching her ASL signs with Spanish, and she uses quite a few already: milk, water, cheese, grapes, eat, daddy, cat, more, bath, sleep, all done, please and monkey. She doesn't talk much, but says mama, dada, "ga" (for gato = cat), up, hi, uh-oh and tickle. She growls for a lion, and quacks like a duck. She waves hi and bye, likes to give butzers (raspberries), LOVES to read books, and is obsessed with our cats. She just started walking (as her chosen means of getting around) at Christmas, although she's been knee walking for about 2 months. Check it out... it's pretty amusing:

We had family portraits taken at the end of October. Here she is at 12 months:

Lucas celebrates his 4th hearing birthday in just 8 short days. I haven't decided what we're going to do yet, but something fun. I don't know why, but I'm even more excited for his hearing birthday than his real birthday. It makes me almost giddy just thinking about it. Lucas continues to progress beautifully. He was tested this fall and is scoring at and above age appropriate levels in all areas of language. He will start Kindergarten in the fall at our local elementary school, and will be completely mainstreamed. This is what we've been aiming for for the past 5 years. 

I would really like to blog more this year, and I'm going to try and find time to do so. I want to chronicle Nora's bilingual journey, as it is almost as fascinating as Lucas's hearing journey. Lucas is learning Spanish too, just not the same as Nora. In the middle of the night the other night, he asked me for "más agua" (more water). 

May your new year be blessed with new experiences!

advocacy

dyeing Easter eggs!

Wow, it's been a long time. There are no excuses, but several explanations for my blog hiatus. Although I have SIGNIFICANTLY more time on my hands than if I were working, having two kids is keeping me very busy! Mostly though, Lucas's hearing loss journey has slowed down. It has peeked and plateaued. We are right where we'd like to be.

Despite the missing processor that we are still desperately searching for, Lucas continues to progress remarkably well, and especially thrive in his mainstream setting. He continues to take swimming lessons and has started playing soccer. He has lots of friends with whom he communicates brilliantly. He is doing everything that I would expect of a typical 4-year-old boy.

Our biggest buzz word around here lately is advocacy... in several different contexts. I like to believe that I moved into advocacy mode when I stopped grieving his hearing loss when Lucas was 6 months old and I began this blog. Before that, I couldn't read about other children with hearing loss, because it was just too painful. Thank goodness I got over that quickly and began advocating for my child. I believe that this advocacy mode will last for a long time to come, at least until he goes to college and I now longer have much input. He will then have to fully advocate for himself. And those are the skills that we have begun to work on... NOW.

Prior to re-writing his IEP this year, Lucas received services at home from a teacher of the deaf once a week for 3 out of 4 weeks a month, with the 4th visit being at preschool. She now pushes in to his classroom every other week, with her goal being to teach him self-advocacy skills. He is learning to speak up when he doesn't hear, to ask others to repeat themselves, to position himself strategically in the best location in the classroom (away from loud objects such as radiators or music, as close as possible to the teacher). These skills are important LIFE skills, and will be most important when he enters grade school.

Although we're teaching him self-advocacy, I'm still advocating for him from the sidelines. I have mastered the 1-minute here's-what-you-need-to-know-about-his-ears-and-his-needs speech. This has been helpful for swim lessons, soccer practice and church. It goes something like this:

"Hi, my son's name is Lucas and he's deaf. (pause and let it sink in)... But, he hears and speaks really well with his cochlear implants (pause longer this time for the processing of an illogical concept)... I have two tips for you... get his attention before you speak to him, and be as close to him as possible when you do. Don't worry if one of the magnets falls off, because he can put it back on himself, but if the processor falls off, he may need some help positioning it back on his ear. Okay, thanks, bye... and good luck."

I'm also advocating for our local children with hearing loss. By starting a support group, we are helping each other advocate, informing each other about how to give our children the care and services they need and deserve, every step of the way.

Recently I visited my local state senator to speak to him personally about supporting oral deaf education in Pennsylvania. The idea was not all my own, but it made me feel incredibly empowered, like I could truly make a difference on a broader level. What was really cool, is that I took Lucas with me, so he could speak for himself. He certainly left a lasting impression on the senator, who was thoroughly impressed at Lucas's ability to express himself. I got to do some educating on cochlear implants (one of my favorite things to do), and the senator gave me a 100% commitment to writing a letter of support, which was my request. I also encouraged him to continue to support Medicaid in PA, without which Lucas may not have one and would certainly not have two cochlear implants. We would be paying for that first surgery for the next 50 years, and would probably both have 2 additional part-time jobs. He agreed that it was worth every penny the state spent.

Life is good, and we are immensely blessed by this hearing loss journey. It has opened many new doors and experiences, and we've met so many people whose paths we never would have crossed.

"Alone we can do so little; together we can do so much." ~ Helen Keller

Ten on Tuesday

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!

1st day of preschool

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. 

Cooperative or uncooperative? That is the question...

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...

how cool is that?

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...

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?

3 months out

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

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.

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

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.

master lip reader

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.

sounds like garbage

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*

home, sweet (new) home

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!

transitions

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.

final thoughts on our JTC experience

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.

a long overdue update

It's been a while, to say the least! I'm a little sad about it too. I wish I could blog every day. I have so much to write about! Life is just busier than ever before! We are... trying to sell our house/buy a new house, finishing up the school year (2 weeks to go!), taking 3 graduate courses over 6 weeks, fighting a few small educational battles, working on our local United Way campaign for next year, and preparing to go to JTC this July! I can't wait for this summer, so that I can blog more regularly, especially to chronicle our trip to LA!

Here are a few updates on Lucas:

1. Lucas is finally having his thumb fixed on June 16. Surgery has been cancelled twice this spring, first because he got pink eye the day before the first surgery, and second because he had a fever of unknown origin for several days before the second surgery. Please pray that he will finally have his trigger thumb fixed.

2. Lucas's health this spring has been rocky, to say the least. He had pink eye, which cancelled the first surgery and he was subsequently put on Augmentin for 10 days. 2 days after he stopped that, the pink eye came back, so then we gave him 7 days of antibiotic drops. A few days after the drops ended, he got sick and was vomiting. For 10 days after that, he had a moderate fever with absolutely no other symptoms. So, they ran a whole gamut of tests: urinalysis (by catheterization, poor kid!), blood work, chest x-ray, strep throat test - all negative. If he hadn't been acting so normally, they would have hospitalized him. Because of the 30 times higher risk of contracting meningitis that he has because of his cochlear implant, our pediatrician consulted the ENTs at CHOP and it was recommended that Lucas go back on Augmentin for 10 days. So, we did. Even though they didn't believe the problem was bacterial, but rather viral, they wanted to err on the side of caution. Throw in lots of awful diaper rash and many, many sleepless nights for the little man (and Mommy!!!), and it made for a pretty crappy springtime. Luckily he's been well since shortly after his re-scheduled surgery was cancelled on April 30. Please knock on wood.

3. We had a good experience with his new cardiologist. We really liked him, which is sooooo important to us. Lucas's heart condition has not improved, but does not seem to have gotten much worse either. Since it is a new doctor with new perspective, his take on things is a little different. This will be our baseline from now on. He was unable to get an accurate heart echo because of Lucas's cooperation level, so he's going to take advantage of Lucas being under general anesthesia during his thumb operation and get a good reading then. We will anxiously await more accurate details of his heart. For now, we're just glad that he has no activity restrictions and is a happy little boy.

4. Lucas is now in a toddler bed. During all of his sick days, he first figured out how to crawl out of the pack-n-play at my mom's house, and then climbed out of his crib at home. We went into "operation big boy bed" mode, and set up the toddler bed on a Tuesday night. We felt that we didn't really have a choice. We didn't want him to hurt himself. It's gone really well. He LOVES it, and wants to show everyone who comes over his "new bed". We're glad that he can't yet manipulate the door knobs in his bedroom, so he's at least confined to his room for now. I've also learned how helpful a video monitor is, as I can see whether or not Lucas is sleeping in bed. He has a tendency to fall asleep at the door or on his glider rocker.

 5. I think that Lucas was a fish in his former life. This kid loves to swim and has NO fear of water AT ALL! He and his cousin, Ryan, have enjoyed some hot days in the kiddie pool in the backyard. We took him swimming at an in-ground pool Thursday night, and he was crazy! He kept dunking his head and trying to swim back and forth between us. I think we will continue to encourage this interest of his, because we too love to swim! I love that he can hear while he swims too!

6. When and if we finally do move, we will really miss being able to walk to 2 great parks! Lucas enjoys the park, and it's great physical therapy for him. Although he's doing really well physically, we can still tell that he has weaknesses with his balance. When we put him down after holding him, for instance, we have to hold on for a few seconds to help him get his balance, or else he falls right on his hiney. He's still working on running and jumping, and we're practicing walking on uneven surfaces and stepping over things. The park is great for all of that!

7. We've been enjoying some community outings when Lucas has been feeling well! A few weekends ago there was a little fest in our town, and Lucas had a blast on the barrel ride pictured above. Last night we went to a popcorn festival in a local town too. I hope that we can go to more!

8. Lucas's language continues to explode. He's beginning to ask questions, and consistently strings 3 & 4 word sentences together. We continue to be thankful for Lucas's wonderful therapists. Lucas is no longer attending Clarke PA's toddler group because of the time and distance, but we continue to hold it in high regard and wish that we just lived a bit closer. Lucas will, however, be attending a mainstream preschool for 2.5 year olds 3 days a week starting in September. We're really looking forward to that. That's also about the time when we will begin the IEP transition. I'm so glad that I have so many blog friends to look to for guidance on that process!!!

Sorry about the super long post! It was the easiest way for me to update things. Hopefully I can start blogging more very soon! Did I mention that there are only 2 weeks until summer freedom? I'm really, really, really looking forward to it!

We have to do what?

I never thought I'd be able to say this. Lucas hears and understands us so well, that we have to spell words around him. Yes. Around our deaf son, we have to spell words. U.N.B.E.L.I.E.V.A.B.L.E.

I mean, it's not that he understands everything that we say, but enough! His favorite things right now are going outside and going for a ride in his beloved car. This car:

So, we have to spell "outside" and "car". That's it so far, but I'm pretty excited about it. Again, I take nothing for granted with him.

Here are a couple of other recent Lucas observations:

He is walking much better and can even stand for extended periods of time on his own (see above picture!). I'm soooooo thrilled about that. He's not exactly functionally walking, but he's getting there!!!

The other day, Lucas was resting his head on my shoulder and the room was completely silent. One of our cats walked into the room and quietly meowed. Lucas sat straight up and looked for the sound. I was impressed.

I've been whispering around Lucas to see what he can understand. When I whisper "let's go find Daddy," Lucas signs "daddy." I'm so excited that he can hear me whisper.

I'm still waiting for a spoken language explosion, but Lucas is consistently saying "up," "down," and "bye-bye."

Cochlear implants are amazing. I really never thought his would work this well. But it does, and I am soooo grateful.

the week of appointments

Today was Lucas's 18 month well baby visit (at 19 months). Because of his CI surgery, his 12 months immunizations were pushed back a month, also pushing back his 18 month immunizations. So, it was a pretty easy appointment. For once, I didn't have a long list of questions for our pediatrician. It felt kind of nice. Lucas is in the 5% for height and weight, so he's a little guy! But, he continues to gain weight and grow, so we're not worried. And, I think Lucas is done with shots for a little while, woo hoo!

Tomorrow, we head to CHOP. Despite the long drive, it will be an easy day, with just audiology and a speech evaluation. It makes me think back to last year, and all of the days when we had 3, 4 and even 5 appointments in one day. Tomorrow will be nothing like that. I'm actually looking forward to seeing where Lucas tests in the booth. I know that he is hearing more than he tested last time.

But, I'm worried about speech. There, I said it. Lucas is doing wonderfully, but how will he really measure up? In terms of speech, he's doing very little. So, I guess we'll wait and see what she has to say.

But, I decided to make a list of what he IS doing to bring along and share, to especially emphasize his receptive spoken language, since that seems to be his strength right now. At 19 months of age, and 6.5 months post activation...

* Lucas responds to a variety of sounds, from birds chirping to airplanes flying overhead, to dogs barking from afar.

* Lucas makes a variety of sounds, although mostly the same ones he was making at 16 months: mama, dada, baba, nana.

* Lucas will blow kisses, if he is either asked to blow a kiss, or hears a kissing sound.

* Lucas will cover his eyes with his hands if you say “peek-a-boo.”

* Lucas will throw his arms up in the air if you ask him “How big is Lucas? So big!”

* Lucas will identify the following body parts on himself and on a book, and sometimes on other people: eyes, nose, belly button.

* Lucas will gesture along to “the wheels on the bus” with the horn and wipers.

* Lucas will tap the horn on his car when prompted by “beep, beep.”

* Lucas will clap when prompted by "yay!"

* Lucas’s expressive words or approximations: mama, ahhhh – airplane, dada, bye bye, bown – down, hi, muh muh – milk, buhbuh – bubbles, ba – ball, uh – up, ow - meow

* Lucas’s expressive signs: milk, eat, more, light, mommy, cat/kitty/meow, uh-oh, please, cheese, what, bye-bye, dog, all done, hi, down, book, bed, hat, bath, rain, daddy, brush teeth, fish, bird, airplane, hot, ball, monkey, mouse [He will do all of these signs with verbal cues only.]

* Lucas understands and responds to the following spoken words by a show of excitement, pointing, etc., in addition to all of the words that he knows signs for: cracker, water, up, upstairs, downstairs, outside, hungry, point to the…, diaper, animal sounds, car/ride, walk, Oma [This list is not comprehensive.]

Our week of appointments ends on Thursday with a visit to the cardiologist, for his 6 month follow-up visit. Hopefully he will remain on monitor only status, and we will return in another 6 months. Expect some updates.