Tuesday, June 10, 2008

Introduction and Welcome!

Greetings family and friends!

Welcome to Lucas' blog. We hope that we can more easily keep you updated on his progress through the use of this blog. Lucas is now 5 1/2 months old and growing like a pretty weed! He's all smiles and giggles, and he's working on learning how to sit. He loves to stand too. He's a strong little bug! He's also very vocal, which is good, as he could easily lose that because he hears nothing. His hearing loss is categorized as severe-profound sensorineural hearing loss. There is still no known cause.

Lucas was born on December 23, 2007, 4 1/2 weeks ahead of schedule. He was 5 lb. 7 oz. and 18.5 inches. He spent 8 days in the NICU: a few days on a CPAP, and a few days under the bilirubin lights. He did not pass his newborn hearing screening in the hospital. I found out later that the screening only tests up to 35 decibels. We were refered to an audiologist at the end of January for further testing. At the first ABR (Auditory Brainstem Response) test (January 22, 2008), we were told that the results were inconclusive because his ears were still so small (his adjusted age at the time was 0). Looking back on that, what occurred is that they got no response up to 90 decibels, and were hoping to blame it on his age.

We returned on February 12, 2008 for another ABR, and on that day, we received the news that Lucas' hearing loss was severe-profound, and that they had, in fact, gotten no response at the highest end of the test (90 decibels). We were referred to the Children's Hospital of Philadelphia for further testing. On March 19, 2008 we headed down to Philadelphia to meet with a pediatric ENT and a pediatric audiologist. The results were the same, but the ENT found amber fluid on his ears, which could have been affecting the level of his hearing loss. He was fitted with hearing aids, and we returned on March 28 to pick them up. I had no idea what we were in for with the hearing aids! They're very sensitive and give off feedback like a microphone if they're not in perfectly. Thank goodness they fit better now! He also doesn't mind them that much yet.

Most recently, we went back down for a hearing aid check and his 4th ABR. At that time, the ENT said that his ears were clear of fluid, so we would be able to get an accurate ABR reading. That's when they found hearing in his right at 90 decibels at a middle frequency. The test only tests up to 90 decibels, so we don't yet know where his other ear fits on the audiogram. It's not exactly hearing as we know it, but it's not a total absence of hearing either, so that's good news. Check out this speech banana to understand better what 90 decibels sounds like.

Our next visit to CHOP is June 25. At that time, we will test Lucas' hearing in a sound-proof booth. That test goes up to 120 decibels, so hopefully we'll have a better idea. He will still be young though, so we may not know that information for a while. They will chart his hearing based on his reactions, but he may not react a lot because of his age. We've been told not to get our hopes up.

For now, Lucas has hearing aids. We don't know the exact benefit of the hearing aids, because we can't exactly ask him if he hears us. Based on his audiogram, he should be able to hear some very loud sounds. However, he cannot understand spoken language because of the severity of his hearing loss, even with the hearing aids. We still wear them as much as possible though, because we just don't know.

Your prayers are always appreciated.

3 comments:

Christian's Mommy said...

Thanks for visiting my site!

Congratulations on such a beautiful little boy. He is just too cute!

Don't rule out the benefit of hearing aids just quite yet. My little guy who has a severe-profound bilateral loss as well (his right is profound and his left is severe-profound) actually did receive some really good benefit from his aids. Check out some of my videos of him speaking words like "Ball", "Hat", and "Elmo" while aided. While they didn't give him access to everything, Christian's ability to learn to listen with his aids gave him a great foundation for his Cochlear Implant.

You're in for an exciting, scary, but BLESSED journey with your son. Keep an open mind, an let Lucas lead the way!

Tina
www.livelaughlovefamily.blogspot.com

Brendan and Sandy Garrett said...

My prayers are constant.

Drew's Mom said...

Hi! Thanks for leaving a comment so I could find you!

Drew didn't receive any benefit from his aids, but he wore them each day! I think it was good for him to get used to having something on his ears all the time!

You little guy is so handsome! If you need any help or have any quesitons on this whole process, please don't hesitate to ask!