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 never.take.it.for.granted. 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?

9 months from now...

And no, I'm not pregnant! But, today's cardiology appointment went so well that we don't have to return for another 9 months. Yay!

We start each appointment with a heart echo. The last 3 times, Lucas has laid there nicely, while the technician does an ultrasound of his heart. Not today. Thankfully, she was still able to get the readings that she needed, but he was not a happy boy. From another room, you might have thought she was cutting open his heart, but really, she was just rubbing ultrasound jelly on his chest. It's such a tough age, because he's old enough to have fear, but not old to understand what's going on, even with an explanation. Hopefully it will go better next time.

Anyway, his heart is really the same, which is great news. The size of the left ventricle has not increased anymore, and since Lucas has grown, the proportions are just barely above the normal range. The doctor didn't even bother to get out a new heart diagram and draw what Lucas's heart looks like compared to a normal heart, because it's the same as last time.

We were done in under an hour, which is record time. And we don't go back until April. Can't beat that.

That too?!?

Yes, that too. I was explaining to a tacky acquaintance once about Lucas's heart condition, and she responded, "he has that wrong with him too?" She meant no real harm, but her words hurt me and I have not forgotten that conversation.

When Lucas was in the NICU after birth, the doctors detected a heart murmur. They did a heart echo and discovered that Lucas has a bicuspid aortic valve, which results in aortic insufficiency (AI). The aortic valve is supposed to have 3 leaves, but Lucas's valve has 2 fused together, making it bicuspid instead of tricuspid. Because the valve cannot fully close, it allows some blood to flow in the reverse direction, causing the detectable murmur. Lucas also has a small Patent Foramen Ovale (PFO), a small hole between the ventricles, which is common in babies (and actually all fetuses have), but it's supposed to close at birth, or shortly thereafter. Lucas's has not closed yet, but is very small. The cardiologist says it's not a problem as long as blood continues to flow from the left to the right ventricle. Yesterday, we were told that the left ventricle is slightly larger (1 mm) than average, so they will continue to watch that.

The cardiologist continues to stress that Lucas's heart condition is MILD. Every time we go, they always ask us if he ever turns blue (!!??!!) or sweats excessively. No, none of the above. At this point, they just want to monitor him every 6 months. The doctor always tells us to continue to treat him like a normal child, with no limitations. But, it is not recommended that he play football, wrestle or do power lifting when he's older. Oh shucks (please sense the sarcasm). In the future, he MAY require medication, and eventually (a few decades?) he MAY need to have his valve replaced, but he also may not. WE'RE NO WHERE NEAR THAT POINT. Nate's maternal grandfather had the same condition, didn't know about it until he was in his 60s, and lived into his 80s, so that gives us hope. But sitting in the cardiologist's office yesterday, with his CI processor on, I know people were thinking, "that too?" Yeah, that too. It hurts me very badly to think about it. I often want to cry when I meet new kids who are perfectly healthy. Even though I know it's ridiculous, I continue to wonder what I did wrong.

Hearing loss is not life threatening, but rather "lifestyle" threatening. The heart is a different story. But his hearing loss is a much bigger deal right now. It threatens communication, which is at the very center of human existence. We visit the audiologist at the "Center for Childhood Communication," not the "Center for Childhood Hearing." Our goal is to provide him with multiple ways to communicate, so that he doesn't miss out. That's why he has a cochlear implant. That's why we're learning to sign. That's why I'm home right now, teaching him to listen.

Progress with the CI is slow, but expected. Because of his age (13 months), I can't expect him to belt out words, considering he probably wouldn't be speaking even if he could hear! He continues to turn to loud sounds, and I constantly point to my ear and ask "Do you hear that?" I also try to talk constantly to him, to expose him to the spoken language he's missed for the past year of life, plus 8 months in the womb (he didn't spend 9 months there). I sandwich signs with words - say the word, say the word and sign it, say the word again. And, we're still meowing at the meow meows all the time (my favorite... it will never get old!). His speech therapist and teacher of the deaf are great. I look forward to speech therapy today for some new ideas.

I'm anxiously waiting for him to make more sounds though. He used to be so chatty, but it stopped around Christmas, and now (other than his crying/fussing sounds) he makes this one strange sound that's indescribable. It's a guttural sound, that sounds like he's clearing his throat, or sick, or choking or something. It's awful, and kind of embarrassing. My sister thought he was going to throw up, my grandmother thought he was choking, and others just don't know what he's doing. I can't wait until he gets rid of it.

I don't want Lucas to grow up too fast, but sometimes I wish I could see 10 years ahead, and know that everything will be alright... that he can talk, that he can walk (not quite there yet), that his CI is successful, that his heart is still on "monitor-only" status. But I know I can't, so I continue to cling to hope and lots of CI success stories to help me through.