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!

the talk

I guess it's more like an ongoing conversation of sorts, than "the talk". And no, I'm not talking about the birds and the bees. I'm referring to his ear. With every passing day, Lucas enters further and further into toddlerhood and heightened awareness of his surroundings. It's the right time to begin talking to him, however simply, about his cochlear implant.

It's no longer that Lucas wakes up and I put it on his head, like when he was first implanted. I ask him if he wants it first, and usually he asks for it first anyway. He gets that he can't access his world without it. He understands the difference between when he is and isn't wearing his CI. Whether he understands that as "hearing" or not, I'm not sure.

I want him to develop language to talk about his CI, and a basic understanding of what it is. When I'm wearing my glasses, I will often say "Mommy needs her glasses to see, just like you need your CI to hear." He understands his CI receptively as his "ear". When we're at the playground, we ask for him to hand us "his ear" right before he goes down the slide. He always willingly obliges. Recently though, I've taught him to say "CI". He hasn't used it spontaneously yet, but it will come. I decided "cochlear implant" is too long and technical right now (and he won't be able to pronounce it well anyway). I also decided that "ear", while cute and appropriate within our family, is not the right expressive word for him either. "CI" it will be, until he chooses another way of describing it for himself.

Speaking of spontaneous, Nate and I heard Lucas say "thank you" today, UNPROMPTED. I realize this is just a natural toddler milestone, but we're always extra excited when he reaches them. It made me think of this blogpost over at Hopeful Parents (great website, by the way). Not that I have any common experiences with this mother, but more that she got me thinking about how we constantly prompt as parents, and then they finally get it on their own. Saying "thank you" hasn't been a point of frustration for us or anything, but it's exciting that he produced it on his own.

How do you talk to your young toddler about his/her cochlear implant/hearing loss? What kinds of words do you use to describe it? I dread the day when Lucas asks me why no one else around him has a CI, or starts a conversation like this. Those are the days that I'm thankful that we do know a few kids locally around Lucas's age who have cochlear implants. I hope that his friend, Jack, and he will grow up to be good buddies. The first time that Jack had his cochlear implant and saw that Lucas has one too, he got really excited and signed "same". It made me cry.

Until then... his "CI" it will be. And I will continue to affirm that he is my special little boy with a special ear to help him hear. Oh yeah, and I'm still meeting that 500-a-day kiss quota.

Do you know the colors of our rainbow?

Every time I talk to Lucas about his colors, this song comes to mind: Colors of the Rainbow from Signing Time. I love it. I think it has a nice tune, and I think it's fun to sign the colors. Rachel Coleman (of Signing Time) is an amazing inspiration, and she writes a really great blog here.

Anyway, back to Lucas. He knows most of his colors now (except some of the more obscure ones). He likes to name the colors of objects. Sometimes he'll even say "not green, not blue, not white, not pink, it's purple." But, recently he has taken to naming the colors for objects one step further. The other morning when I woke him up before school (7 AM) to take him to Nate's mom's house for the day, he started listing car colors for several people in our family: me, Nate, Oma, Opa, Nanny, Granddad. And I was really blown away. I just had no idea that he stored that kind of information! He would probably list more, but two of his aunts' cars are silver, so I think he just ignores them, haha.

So, here it is. I had to prompt him a little, but you can definitely see the wheels turning! "Haha", by the way, is "grandma." That's one word that he can not say yet, so that is his approximation for it. Please excuse the nudy boy. It was one of those exceptionally warm spring days, and I was letting him enjoy it!! (*turn off the music player first*)

Easter Egg fun

We celebrated a beautiful Easter weekend with family and great weather. Lucas was a good age this year to do Easter egg hunts. He has finally officially learned all of his colors, so it was an opportune time to work with colorful, plastic Easter eggs. We spent time with both sides of the family on Easter. Lucas had Easter egg hunts with my nephew, Ryan, and Nate's niece, Lydia. Lucas and Lydia matched too... how cute (thanks Aunt Sarah)! We also got to celebrate Oma's birthday!

He finally got to enjoy the candy after all that hunting!

The video is of Lucas on an Easter egg hunt with Ryan. Lucas had 12 yellow eggs to find and Ryan had 12 blue eggs to find. They were filled with M&M's, and Lucas liked them a little too much. :)

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.