let the countdown begin...

Countdown to what, you might ask? Why, our trip to the John Tracy Clinic, of course! One week from today we head to sunny Los Angeles! I think we finally have everything together. All the paperwork has been sent, hotels have been booked on both ends, and I found a great car rental deal last night. Now, we just have to pack! That will be the tricky part.

I remember sitting outside at Laurie's wedding in Southern California last May and talking about coming back this summer to attend JTC. I was only dreaming about it, and I can't believe that it's actually going to be a reality! I am already really grateful for this amazing opportunity. I've been getting even more hyped up about the trip from this blog I found, thanks to Leah!! It's fun to read about some things that we have to look forward to.

Summer really began when my last grad course ended last Friday. Lucas and I have been having a lot of fun spending quality mommy/Lucas time. I've been dragging him around with me everywhere, which I don't always do when Nate's around. It's been kind of fun. Lucas has also gotten to spend a lot of time with his cousin, Ryan! We spent a couple of days at his house last week, and then he and Aunt Kristin came to visit Oma & Opa (and us, I like to believe) this week.

They're so much fun together these days, because they look forward to seeing each other, and they no longer practice parallel play exclusively. They actually play together and pay attention to each other! I hope these boys grow up to be best friends. And they're only 1 month apart.

But, I also had a lot of bad luck this week. First my car battery died, and then it was towed to the wrong garage. A few days later, my car was egged and mustard was smeared all over it. Very deliberate. Then, a tree fell on our house (causing very minimal damage, thank goodness). Today it was removed. I'm so happy that Nate is coming home tonight! I can't wait to see Lucas's excitement tomorrow!

I hope to blog every day from JTC! That's not a promise, but a strong wish. I also want to tweet while I'm there. You can follow me on Twitter @mommytolucas. I will have to approve your follower request, but please do request to follow me! The more followers I have, the more motivated I will be to tweet!

the Lucas card

I got this idea from a fellow blogger mom on the cicircle yahoo listserv. There was a string of discussion on how to deal with rude people and their stares/comments about CIs. She mentioned that she created a card that she gives out when people are being curious or rude. It reminded me of this post and my struggle also to deal with the stares. To give an update, I am finding my voice when it's appropriate, but I feel empowered by this idea of creating a card about Lucas's CI.

Being the bargain shopper that I am, I caught wind of this deal at Kodak Gallery for 50 free "mommy cards" (you still pay $3.99 shipping) and I decided to create my own Lucas card. I'll put one in my pocket when I go to the park, and I'll keep one in my toddler bag (no longer really a diaper bag). I'll let you know how it goes. I just got them in the mail on Friday and I think they look really great.

What do you think of my card?

Father's Day 2010

Unlike last year and the year before that, Nate was HOME this year for Father's Day... until tomorrow when he leaves for another Europe trek with students. We'll see what next year brings! Anyway, it was nice to have him home.

I believe that any man can be a father, but it takes a special man to be a daddy. And Lucas has a daddy whom he adores. I think Nate will be the first to tell you that hearing Lucas call him "daaaddeee" in his sweet little voice melts his heart. Lucas asks daddy to give him a bath every night, Lucas asks daddy to build duplo towers with him, Lucas loves to go on walks to the park with daddy and Lucas loves to wrestle and tumble with his daddy on the floor. He is a patient, wonderful father who adores his son too. I'm not sure on whom this travel separation will be harder, Lucas or Daddy.

Happy Father's Day, Daddy! Lucas and I love you very much!

totally on the mend!

Lucas is doing really well. If you didn't see his fingerless glove-like bandages, you'd have no idea that he had surgery this week! I'm so glad that he bounced back so quickly!

Friday at Dutch Wonderland was a wonderful way to end a stressful week. This amusement park is geared toward younger children, is the right size and has the perfect amount of trees for shade. If you ever decide to visit the park, let us know and we'll join you!

Here are some pictures. He did pretty well with his ear all day. We only had him remove it once, because we were afraid it would fly. He kept asking for it though, while he was waiting for the ride to start. Our boy loves to hear, that's for sure! We spent the day with Oma & Opa, Aunt Kristin, Uncle Mike & Ryan, and we even saw Aunt Liz, Uncle Chris & Lydia later in the day. Lucas got to ride rides with both of his cousins. The joy on Lucas's face while he was on the rides was absolutely priceless. He especially liked "The Whip"! We hope to go back again some time in August.

two thumbs up

June 16, 2010

3:45 AM - my cell phone alarm went off for the first time.

3:50 AM - I groggily got up and jumped in the shower.

4:10 AM - I headed downstairs to gather everything, got Lucas's ear ready and went to wake him.

4:25 AM - I opened Lucas's door and he stood up and walked over to me... not what I was expecting!

4:35 AM - We were on the road and only 5 minutes late. Not bad for us.

5:55 AM - We arrived at the Children's Hospital of Philadelphia. It's unbelievable that one day it takes us 2.5 hours and the next day 1 hr and 20 minutes.

6:00 AM - We arrived at cardiac registration. We no longer go to the regular surgery registration because Lucas now needs cardiac anesthesia.

6:30 AM - They finally called us back. It was a little annoying to have to arrive by 6, but not do anything until 6:30. Our nurse's name was Lauren. We enjoyed chatting with her all day. Lucas was in really good spirits, and not afraid at all of his surroundings. He enjoyed watching Elmo on his personal tv.

6:45 AM - The IV team arrived to place an IV in Lucas's foot. During the last two surgeries, they put Lucas under before putting in his IV and I was VERY glad for that. I was not pleased with the reverse decision, and I made it clear to the nurse, especially considering what a hard stick he is. Luckily, they found his vein on the first shot and he only shed tears for a few minutes. I was hoping for none though.

7:05 AM - The nurse gave him "giggle juice" and he went to his happy place. He just chilled in his bed and watched Curious George.

7:15 AM - The orthopaedic surgeon came to chat with us and examine Lucas's newly triggering right thumb. Nate and I signed off for his right thumb to be fixed too. He signed Lucas's palms and away he went.

7:30 AM - They came for him and away he went. He didn't even notice that he was leaving us. I guess that was a good thing. We decided to send him away with his ear. We thought it was important that the doctors and nurses be able to talk to him. I was a little nervous, but they assured me they wouldn't lose it.

7:40 AM - Nate and I went to the cafeteria to get something to eat. We decided to just eat there. Breakfast was really good. They had made to order omelets and pancakes. I was thoroughly impressed.

8:05 AM - We headed back to the cardiac reception to wait for news. We thought we would hear by at least 9 AM.

8:50 AM - We spoke with the surgeon about the thumbs surgery. He reported that everything went well, but his left thumb might take some time to completely straighten out, as it has been bent for so long. He said that neither thumb will ever trigger again! Lucas was now having his heart echo done.

10:30 AM - They finally came to get us. The heart echo must have been really thorough!! I'm not complaining though. Lucas continued to sleep for another hour, although he kept wiping his face in his sleep. Very strange.

11:30 AM - Lucas woke up happily for about... 1 minute. Then, he was absolutely hysterical. He wanted his hand bandages OFF and nothing would calm him down. Nothing. He kept flailing his arms, so I held him, Nate held one arm and the nurse held the other arm. It was a long 15 minutes. We gave him some oxycodon and he finally took his sippy cup and calmed down. I've never seen him act like that before in my life. I think he was in a strange state with the anesthesia. I'll be happy if we never experience that again.

12:00 PM - We started getting ready to leave. Everything looked fine and Lucas had been drinking and keeping everything down. Now all he had to do was pee. No problem... or so we thought.

12:30 PM - Still no wet diaper.

1:00 PM - Still no wet diaper.

1:30 PM - Still no wet diaper.

2:00 PM - Still no wet diaper.

2:30 PM - Still no wet diaper. Lucas was very active this whole time too. He entertained the nurses all afternoon with his funny sayings and actions. Even though he was tired, he would not sit still for more than 20 seconds. At least he wasn't crawling out of his bed, but he did keep trying to stand up.

3:00 PM - Still no wet diaper, but Lucas wanted to be held by me. Lucas's bladder was visibly very full, and he was doubled over in pain. We debated whether we should catheterize him or not. Lucas still needed to pee on his own. But, since he was in so much pain, we decided we needed to help him. So, the nurses got all of their materials out, put on their gloves, I laid him down on the bed and.... we had a WET DIAPER. We were thrilled. So, we started the discharge process.

3:20 PM - We were just waiting for the nurse to bring us a dose of medicine for Lucas for the road, and Lucas kept asking for the wash basin. But, it was full of water, because we kept trying to put his feet in it to make him pee, so I couldn't give it to him. I guess he remembered what it was for though, because he proceeded to throw up everywhere. I'm telling you, he's one smart cookie.

3:30 PM - We left the cardiac floor and headed to the 1st floor to pick up his meds. Lucas enjoyed the atrium. It's really a beautiful hospital. I really got the feeling that "hope lives there", just like their motto says.

4:00 PM - We left the parking garage and headed to the Schuykill. Traffic was pretty bad, and what should have taken us 20 minutes took us an hour. Thank goodness Lucas was sleeping.

5:40 PM - The gas light went on. We had forgotten to fill up our gas tank after Tuesday's CHOP trip. Luckily, we were only 3 miles from the service station. We were seriously L.U.C.K.Y.

6:00 PM - We were almost to our exit on the turnpike, but we were engrossed in a story on NPR and we missed it. We're not talking like "oh just get off at the next road and turn around." We're talking "next stop: Harrisburg, PA." We had no choice. At least Lucas was still sleeping.

6:40 PM - We finally arrived at our humble abode. I went to sit down on the couch with Lucas and he immediately wiggled down and asked to watch "toys" (Toy Story). Then he requested to "build towers" (play with his legos and build towers).

9:00 PM - Lucas got a sponge bath, because there will no bath until his bandages come off in a week. I don't know what we're going to do!

9:15 PM - Lucas got one more dose of pain killers and went to sleep.

9:45 PM - I went to sleep. It was a loooooong day.

I didn't hear from him again until 8 AM, although we checked on him several times. Today he is back to his normal self AND he's leaving his bandages alone. He's doing so well that we haven't even given him Tylenol today. It's over. No more thumb surgery. Summer can begin. I give that two thumbs up!!! We are celebrating tomorrow with a trip to Dutch Wonderland. Hopefully he can keep his hands dry!

and the surgery saga continues...

Summer is finally here! But somehow it doesn't feel like it yet. My stress level usually dissipates on the last day of school, but it's still here. Why? I'll tell you.

Yesterday started the first day of my 3rd graduate course in 6 weeks. It's a really great course, and I'm learning a lot, but it's still a lot of work. When the course is over, summer really begins for me, because I don't have to think about school again until August. AMEN.

Lucas's thumbs surgery is finally going to happen tomorrow. That's not a typo, by the way. His trigger thumbS will now be fixed, we believe. Last week I noticed that his right thumb is now triggering. Go figure. We haven't seen the surgeon again, so he'll evaluate when he sees Lucas tomorrow, but he's likely to fix that one too. I guess it was a hidden blessing that surgery was cancelled twice already. We are hopefully avoiding another surgery.

Last week I got a call informing me that Lucas now needs cardiac anesthesia. I was pretty surprised and upset by this, because it's an indication that Lucas's heart condition has either worsened (and we weren't really informed of it) or his condition has been interpreted differently. The most recent cardiac letter (4.5.10) states that the reguritation (which causes the audible murmur) is probably closer to moderate than mild. I believe that's the reason for the change. Nonetheless, Lucas had to attend another pre-anesthesia appointment this morning to cover that. It was rather anti-climatic after traveling 2.5 hours to Philly during rush hour, but I got to drop off his referrals and make sure that everything is ready for tomorrow.

On the bright side, whereas the first time Lucas's surgery was cancelled he had a 12:30 PM arrival time, tomorrow we have a 6:00 AM arrival time. Yes, we have to leave our house by 4:30 AM (no fun!!!), but I don't have to deal with a hungry/thirsty toddler for 6 hours prior to surgery. Lucas's schedule shouldn't be thrown off much because of this surgery time either. I hope.

Tomorrow we're planning a three-fer: three procedures in one surgery. Left thumb, check! Right thumb, probably! And a heart echo while he's still under anesthesia. This way they can get a really good reading of his heart and we can have a baseline for the future.

Please pray for Lucas's safe and successful surgery tomorrow. It's going to be a long day...

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!