not quite as expected...

Lucas woke up Tuesday morning with pink eye. Yes, my healthy boy, who has been illness-free since before Christmas, woke up the day before his long-scheduled thumb surgery with pink eye. Bringing bacteria & infection into the OR is not a great idea. Surgery was canceled, and the perfect timing that I had planned for was thrown away with it. Had it been a few days beforehand, we would have been good to go. What crappy luck. Can you tell I'm a little upset? Understatement. I don't know yet when surgery will be rescheduled. His surgeon only operates on Wednesday afternoons, and that's terribly inconvenient with a full-time work schedule. We might just wait until June now.

Yesterday we headed to CHOP for Lucas's 1-year post-CI evaluation. Yes, 15 months after activation. Why you might ask? Because we had to cancel because of snowmageddon, and this is the first we could reschedule. Thank goodness we didn't have to reschedule again because of pink eye (the pediatrician cleared us). Everything went well, and we even ran into Mikaela and her family! It was a little stressful, because Lucas had his own agenda all day, but he performed decently well for his speech eval, and we were able to get some booth test results. His audi changed his map a tad, and reported that electrodes 11 & 13 still need to stay deactivated, although no more need to be turned off (knock on wood). We head back in 3 months (right before we leave for LA) for an audio check.

On the bright side, during our doctor visit this week, we were able to get some tests/paperwork completed for our trip to JTC this summer! Lucas got his TB test, and I got copies of his immunization records. Now, Nate just has to get his TB test (because I already I have mine), and we'll be ready to spend July in sunny southern California. So excited! We're looking forward to meeting Nolan & family too, in addition to the program!!

We're enjoying the beautiful spring weather this Easter weekend. Monday we are headed back to CHOP for cardiology. This is our 9-month follow-up visit. We had to switch providers, because Penn State Hershey no longer accepts our public insurance. So, we are now going to see a cardiologist at CHOP. I've been wanting to migrate all of his specialists there anyway, so it kind of worked out. It will make future surgeries much easier for getting cardiac anesthesia clearance too, since for each of his surgeries so far, we had to get Hershey to fax his info to the surgeon, who then sent it to cardiac anesthesia for clearance. Now, they can just make a phone call. Luckily, we only have to go to the King of Prussia office, which is about 2/3 of the way to the main hospital. It cuts out an hour of round-trip travel time. Please pray for continued status quo with his heart condition. Maybe they won't want to see him back for a year!

So, although the week turned out to be not quite as expected, we're making the best of it! We look forward to spending time with family tomorrow! Happy Easter!

big french fry

Although he was never really gone, I feel like I finally have my husband back. For the last 9 months, Nate has been working hard on his National Board Certification portfolio, an advanced teaching credential. As soon as he drops it off at the post office tomorrow after school, he will be DONE! Then he has to take a test in June to prove his proficiency in Spanish and wait until November to hear the results. It's not exactly over, but his weekends spent working on the portfolio are over, so we went out to celebrate!

We went to Chili's, because we knew it would be Lucas-friendly and pretty quick. Lucas did really well too, and even sat in his high chair the WHOLE TIME! That doesn't always happen. We ordered him a kid's meal with broccoli as his side, because we knew that he would have a couple of Nate's french fries. Sure enough, as soon as Nate's burger came out, he asked for a french fry. But he was not happy with the small french fry he was given. He wanted a "big french fry." We weren't sure we heard him right the first time, but sure enough, that's what he was saying, and he was not happy until he got a "big french fry". He's definitely 2.

I am thrilled that Lucas is age appropriate right now in both receptive and expressive language. But, I always fear that he won't maintain that level. Our ongoing challenge in the coming years will be to keep it that way. Well, tonight confirmed for me that Lucas continues to progress in his language acquisition and usage.

Lucas is quite the flirt when we're out in public. He waves to people as they arrive and says bye-bye as people leave. Older people especially enjoy his waves. As one couple was leaving the restaurant tonight, a gentleman waved back and told him that he liked his "flashing light". It was very nice of him, and at least he didn't mention contacting outer space...

On the way home from dinner, I caught a little video of what Lucas regularly sounds like when he's narrating his own play. There are a few intelligible words, but mostly jargon. He's usually more understandable than this, but he is definitely trying to tell a good story here about the sun. You should be able to understand "bye-bye & sun". I also hear him reference a snowman at the beginning. Enjoy!!!

*Don't forget to turn off the music player to the right. This video is not captioned, because I don't know how I would caption jargon..."

spring is in the air!

Today I was reminded why springtime is my favorite time of year. I love not having to wear a coat, I love the sunshine, I love hearing the birds, and I love not being couped up inside. I feel like springtime is a time for new beginnings and new life; it gives me a more positive outlook on life. I look forward to spending lots more time outside with Lucas and the wonderful new language opportunities it will bring!

Lucas enjoyed his first trip to the park in about 5 months. It was so much easier now that he can walk well! It was great PT too, walking on uneven surfaces. He could climb up himself and slide down by himself, both improvements from last summer. He even willingly gave me his ear before going down the slide when I asked for it.

He giggled with delight, like I haven't heard him giggle in some time. It's going to be a great spring.

mommy jacket off!

Oh blog, how I've missed you! It's been a while. That's not to say that nothing exciting is happening though! Here's an update on what's going on in the life of Lucas.

Lucas is starting to string together 2 & 3 word phrases, and his jargoning is starting to make sense to me! On Friday, when I took him to Nate's mom's house before work, he wanted me to stay, and he kept saying "mommy jacket off!" His 2 word combinations are much more spontaneous, and no longer consist of just "_____, please", etc. His vocabulary must be 300+ words now.

Did I mention that he's testing age appropriate in language? At the end of January, he was re-tested for his annual IFSP review, and the results were outstanding. I can't believe that he made up 2 years of language in 1 year! Now the trick will be keeping it that way! The language journey is far from over.

Lucas is definitely 2! And he's so much fun! It's really enjoyable to watch him engage in pretend play. He picks one of his animal "friends" and he'll read to them, cook for them, take them for a walk, etc. He even wanted to give his bear a bath the other day. He will also imitate situations, like conditioned play and being placed in time out. He'll take the peg puzzle I use with him to do conditioned ling responses, and hold up the pieces to his ear as he says the lings (unprompted). He'll also take his "time-out" chair, put it against the wall, sit in it, and yell "no, no, no"! It's definitely time to carefully watch what we say and do around him!

His music class must be paying off, because today I noticed that he was singing the isty, bitsy spider. I got it on video... so enjoy his *singing*! You will have to use your imagination a little bit, but you should be able to understand "itsy", "spider", "sun", "wash", "out". I think the spider gets washed out a little much in his version though, LOL!

On March 31, Lucas is finally having surgery at CHOP to repair his trigger thumb. We were waiting to see if we could combine it with another surgery he was going to have, but ended up not needing (yay!). I'm all about the two-for-one surgeries. Your prayers for an easy procedure and quick recovery are appreciated! (both are anticipated)

you know your child has a cochlear implant when...

This post is dedicated to my fellow mommies and daddies of kiddos with cochlear implants. I've been thinking about this list for a while, and it's my way of expressing what has become our "normal". I know many of you will be able to relate, even with a special kid without a cochlear implant. Please add to my list in the comments section!

You know your child has a cochlear implant when...

...his hearing aids made better chew toys than amplification devices.

...you're on a first name basis with the employee at Sally Beauty Supply, because you buy so much wig tape.

...you momentarily wonder why anyone would try to teach the alphabet in the bathtub when your child can't hear in the bathtub, and then you remember...

...you worry about rough play, tumbles, jumping, etc. because his coil might fall off.

...you have a fear of plastic slides.

...you carry along static guard and dryer sheets when you go to the park.

...you find yourself pointing out every sound that you hear (while pointing to your ear), even all those lovely potty sounds.

...you pop his coil off once and a while and yell really loudly, to make sure that he really can't hear without it.

...you've ever gotten strange looks or questions while in public.

...you know what "ear gear" and "critter clips" are.

...you never leave home without extra batteries, a back-up processor, a remote control, or extra wig tape.

...you've discovered a contraption, like an aloksak or food saver bag, to allow your child to hear while swimming.

...children without cochlear implants start to look stranger than those with cochlear implants.

...you decorate your child's CI to make it look "cool".

...you've ever been driving and gotten hit in the back of the head with a flying processor.
...you've had to search high and low for a processor that your child has mysteriously hidden somewhere, maybe even having disassembled first.
...you know few, if any, other kids (or even adults) with cochlear implants. You've made most of your connections through the blogging world, or on facebook.
...you've traveled far and wide to meet up with other families of children with cochlear implants.

...you've taken the John Tracy Clinic correspondence course.

...you are a member of the Alexander Graham Bell Association for the Deaf and Hard of Hearing, Hand and Voices, or the American Society for Deaf Children.

...you've ever received or know of others who have received hateful comments from a member of the Deaf community.

...you check the Ling sounds every day, and get worried if your child doesn't respond.
...you refer to his processor as his "ear".
...your child takes off his "ear" because he's mad, frustrated, or doesn't want to hear you anymore.
...you spend at least 2 hours a week in formal therapy, but all playtime is unofficial therapy time, and you're always looking for a teachable moment.
...you narrate everything that you do, and even elicit strange looks at the grocery store from your repetitive comments like "up, up, up you go", "do you want a piece of cheese? hmmmm, cheese? I like cheese. Do you like cheese?"
...you marvel every day at how the simple act of attaching the magnet allows your child to go from 0 to 95 in an instant.
...you've adopted the "I love you" sign as your family symbol, even if you don't use sign language with your child.
...you can't imagine life for your child without it.

Snowmageddon

We were hoping for a little bit of snow this winter, and we certainly got our wish. Between last weekend and this week, our town has been blanketed with almost 40" of snow. The last time we got this much snow was in 1996. Some places are calling it "snowpacolypse" and others "snowmageddon." Whatever you want to call it, Jack Frost has certainly let loose on the northeast. I keep wondering whether it's ever going to melt. At this rate, we'll still have snow on the ground in June.

Lucas is, in a nutshell, thrilled. When he convinces me to take him outside, I can't get him to come back in. I have to bribe him with the prospect of watching Elmo's World, his most recent obsession. It's a little scary too. If he weren't so brightly dressed, I'd be afraid to lose him. It's a good thing that Daddy likes to romp in the snow and go sledding, because I'm only good for walks in his sled.

Enjoy the pictures and the video clips! I made a video out of several different clips, showing a variety of Lucas phrases: "snow", "stand up", "help, please", "cold", "brrrr", and more "snowwwwwww!" The second video is a bunch of still shots I pieced together of Lucas sledding with his daddy.


almost as tall as he is...
our neighbor's car...

total snowy joy...

ummmm... is he allowed to eat this stuff?

sledding with daddy...

playing in the snow with Aunt "Eeeeeee"

I guess the snow brought some new firsts for Lucas too... his first real sledding experience, his first cup of hot (warm) chocolate, and his first movie, "The Jungle Book." It looks like I won't have school again until Tuesday, so I'm really enjoying the time off with Lucas. Hope you're staying warm...

it will not hold him back...

It's been a very eventful day, and I have lots to say!

Being a public school teacher awarded me the day off to celebrate Martin Luther King, Jr.'s birthday. Somehow, although Lucas's "struggles" are not race related, today was a very fitting day for two amazing hearing journey firsts.

Inspired by the success that Mari has had in music therapy, I decided to sign Lucas up for a music class. I found the class through a local rec center. With 4 other 2-year olds, Lucas danced, "sang" and dabbled with 15 or so odd toddler-friendly musical instruments this morning. I find a certain amount of irony in a deaf kid taking a music class, but it was one of those proud CI momma moments.

We were the first to arrive (kind of purposefully), so I was able to explain everything to his instructor. It's kind of hard to explain that he's totally deaf, but he can hear at the same time. She asked me if he could hear and understand us talk, so I decided to show her. I said "Lucas, say hi to Miss ____". He turned, waved and said hi. Point made. I think she needed to see it to really believe it. I can't blame her, because it still amazes me every day too. She was really sweet and told the class up front that "Lucas might not hear everything like everyone else." It was perfect, and really accurate too. I can't wait for the next 11 weeks of class. Although Oma will get to mostly participate in this one too, I have 3 more Mondays off before the class is over. I'm looking forward to it.

There are mixed reviews on music appreciation with the cochlear implant. Technology is improving that link all the time, but I'm under the impression that "busy" music is what's difficult - music with lots of different instruments, singing, etc. So, I believe that isolated music - just singing, just drums, just bells, etc. should be just fine for him. In fact, I think it will be GREAT for him, especially for improving his sound discrimination. His hearing loss will not hold him back from participating in a music class.

I also got to accompany him to aquatic therapy today. Boy was he in for a surprise! He had SOUND in the POOL! Since we've been contemplating private swimming lessons in this kid-friendly pool, I've concluded that his sessions will be more valuable to him if he can hear instructions. So, for his hearing birthday, I ordered a 5"x4" Aloksak bag and a lycra swimming cap from Amazon, and I took an expensive chance. It worked like a charm. It was so funny though, because when I was getting him changed, I kept trying to re-attach his ear, and he kept pulling it off, because he knows he can't have it in the pool, and he was so intent on going swimming. I had to have a heart-to-heart with him, and ask him if he wanted to hear while he swam. Once he understood, he was thrilled. He was able to follow simple instructions in the pool today, like "kick", "push", "blow bubbles", "get the ring" and best of all, "don't splash!". It makes me cry just thinking about it. His hearing loss will not hold him back from hearing while he swims.

the set up

hearing in the pool!

Lastly, while at aquatic therapy today, I picked up some free magazines from our area that advertise kid-related events. The one is specifically geared toward special needs kids. When I got home, I found a short article on a deaf teenager. Although I found her story inspiring, I read that she attends a residential deaf school, and when she graduates she may attend a vocational school that specializes in training adults who are deaf and hard of hearing. I'm sure she is happy and thriving, and she will lead a fulfilling life. There's absolutely nothing wrong with attending a vocational school either. But, I can't help but think about how Lucas will not need specialized training like that. And we will never have to send him away to a residential school, unless he asks to go. His hearing loss will not hold him back educationally.

All of these little miracles would not be possible without Lucas's cochlear implant. It's plain and simple. We would love him just the same. We would still see to it that he met his full potential. We would work hard to provide him with enriching experiences. But he would never hear music, he would never have the opportunity to hear in the pool, and he would not have an array of educational options to choose from. No one can deny that. I am a very happy momma today.

Enjoy Lucas in the pool!!!!!!!!!