Saturday, May 29, 2010

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!