Saturday, December 24, 2011


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

Tuesday, November 8, 2011

Dear Lucas

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,



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.

Tuesday, October 11, 2011

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!

Monday, October 10, 2011

language sample - 3 year 9 months

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!

Monday, October 3, 2011


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 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.

Monday, September 12, 2011

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. 

Friday, June 24, 2011

brought to you by the letter "s"

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.

Thursday, June 23, 2011

Thankful on Thursday

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 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?

Wednesday, June 22, 2011

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...

Tuesday, June 21, 2011

the next day

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!

Monday, June 20, 2011

behind us

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 I called the pharmacy for advice and they said they could add flavoring & decrease the bitterness, but he 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!

Sunday, June 19, 2011


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 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.


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!

Tuesday, June 7, 2011

Ten on Tuesday

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!!

Tuesday, May 24, 2011

Ten on Tuesday

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...

Sunday, April 24, 2011

Happy Easter!



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

Happy Easter!!!

Tuesday, April 19, 2011

Ten on Tuesday

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.

Saturday, April 16, 2011

it's baaaack...

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!!