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!!