Monday, July 21, 2008

This, That and the Other Thing...

I think it's time for another post! This picture was taken yesterday at my nephew's baptism. We decided to get a family shot, as we don't have many of the 3 of us looking nice.

Lucas is almost 7 months old and he is so joyful! He is pleasant, curious and he doesn't miss a beat with his eyes. He can't quite sit on his own, but he's trying! I think he would prefer to stand all the time anyway. He reaches and grabs for objects, and my Nanny taught him to lift his hands if you put yours out to him. His giggle is contagious and he has a great belly laugh. And he's a water baby! He can spend an hour or more in the water and not get bored. He likes to float on his back, throw his head back in the water and kick, kick, kick! I'm so glad that he likes the water, as Nate and I love to swim. He started eating solids about a month ago. So far he's had: rice, oatmeal, barley, carrots, sweet potatoes, butternut squash, green beans and sweet peas. He seemed not to like the green beans too much, but he didn't completely reject them either. He's also teething. It looks as if his top front teeth will come in before the bottom ones. What a surprise. Not much else has followed "textbook" progression with him, so why would he start now? (big smiley face) I regularly forget that he is profoundly deaf. Then reality hits me square in the face.

I no longer feel the need to refer to his hearing loss as severe-profound, as he has yet to test in the severe range. And, the last report we got from CHOP lists his responses to speech stimuli as "consistent with profound hearing loss, bilaterally." I often think about how different it would be if his hearing loss were only moderate. He could at least hear me call his name. I know it really wouldn't be any easier, but the grass always seems greener on the other side of the fence.

We still have yet to elicit any kind of reaction from him. But, I am absolutely convinced that when I put his hearing aids in every day, he starts to vocalize within 30 seconds, without fail. My Mom has confirmed it and so has Nate, so I'm not just imagining things either. So maybe he can hear himself a bit with his hearing aids in. I would agree that he's at least getting sound awareness.

Lucas is now a celebrity! I've passed the blog along to all of the (many) healthcare professionals that he works with, and I was contacted by CHOP to see if I would allow them to use the blog picture of Lucas in their publications! How exciting! And now I'm going to praise CHOP. Lucas is enrolled in their "CATIPIHLER" program (CHOP's Assessment and Treatment Implementation Program for Infants and toddlers with Hearing Loss - Enhancing (Re)habilitation). Two of the MAJOR benefits of the program are loaner hearing aids and free hearing aid molds for the first year! If he is a CI candidate, we will never have to purchase hearing aids on our own then. Other benefits include: speech and language assessments and intervention sessions with certified AV therapists, consultation with an educational consultant, meeting with a counselor or social worker, and assistance with referrals to other specialists, if needed. It has been very helpful, especially when I'm trying to schedule more than one appointment on one day, I've contacted CATIPIHLER and they've helped me get it done more efficiently. If I have one complaint about CHOP, it's been some incompetent support staff (receptionists, etc.) and this program has helped me bypass those frustrations. I'm very impressed with the ENT and audiologist we've been working with, so CHOP gets an A so far (Can you tell I'm a teacher?). That comment reminds me of when Lucas was admitted to the hospital over Easter with RSV with an oxygen saturation level of 80%. Initially, Nate and I were like "that's not so bad, it's a low B"... haha, now we know much better! We head to the Outer Banks in 2 weeks, then we return for marathon CHOP appointments - August 11, 12, 13 & 20. Oh yeah, I hand delivered his MRI CD to CHOP last Tuesday, and the ENT we were seeing called to re-schedule with me with one of the CI ENT surgeons, so we will see him on August 13. We will know the results of the MRI by then, at the latest.


Jennifer said...

What a great picture of you guys! And I love the pipe organ in the back.
I'm glad to hear that you're feeling optimistic. It's always a good way to start the week. :-) I hope that good things continue to head in your direction.


Jennifer said...


My name is Jennifer and I found your blog as a link from another deaf child's blog. My daughter, Carys, is 2 years old and has severe-to-profound hearing loss. I thought I'd leave a comment b/c we live in the Philly region and she has been a patient at CHOP since her first hearing test at 3 weeks old! Carys got her CI last summer (activated at 15 months old) and is doing so well - she amazes me every day.

Anyway, I thought I'd pop in and say hi and introduce myself. We've so recently been through all the CI stuff at CHOP, and I know when we were preparing for surgery it was so overwhelming. If you need anything, please email me at!

Lucas is beautiful and lucky to have such great parents! I wish you the best in your journey.

All the best,

tammy said...

WOW! A lot has gone on! I can "feel" the happiness in you as I read this blog ... it sure made me smile. This is such a road trip isn't it? We've been ambushed with appts. lately too, and it can get overwhelming, but all well worth it. Everytime I hear Aiden laugh or coo it just melts my heart and keeps me going. How great that Lucas vocalizes with the aids on!

By the way, what a GREAT program for you at CHOP! I wish we had something similar here. I'm glad to hear things are looking good for you all!