Some genetics

We found out this past week the cause of Alex's hearing loss--it is genetic. Spencer and I both have a recessive gene, conexxin 26, which results in hearing loss. It is so strange to find this out. We had a 25% chance with each pregnancy to have a baby with hearing loss. Luckily, I didn't know that during my 5 pregnancies! Also, we don't see hearing loss in our family lines, so we never would have guessed that we had this possibility. There is a positive side to having this information. I'm glad to know that I didn't "do anything wrong" while pregnant with him. For Alex, we know that his hearing loss isn't caused by another syndrome that could cause more problems for him. This is a great relief. And now we move on.

What we've learned so far...

Spencer has wanted me to post what we've learned about having a deaf/hard of hearing baby so far--he's only 4 months old, but someone searching for information on a just-diagnosed baby may find this helpful. First of all, order the free video from oraldeafed.org. This will be the best video you'll ever see--and I dare you to watch it without crying. Second, get hearing aids before three months of age. These hearing aids need to be put on with tupee tape--they'll NEVER stay on without it. Plan on getting new molds every month--pay the extra for overnight shipping. Now, for what to do. Talk, talk, talk, talk to your baby. When you're done with that, sing, sing, sing. Nursery rhymes and a sing-song voice are great. Touch your baby's arms, legs, tummy with a touch that goes with your voice--tap him when making a "Bbb" sound, stroke his arm with a longer sound. Take turns conversing with him when he/she babbles. Intervention needs to be provided to you by an AV specialist--contact your state's school for the deaf and blind. You may want to register for the online classes at the John Tracy Clinic--it's free for parents. I hope this helps. I wonder if those reading this blog who have older deaf/hard of hearing children will laugh at how little we know now, but I plan to know as much as is available before Alex hits kindergarten--in his mainstreamed classroom.

Christmas pics

We had a fun, fun, fun Christmas. Anna was VERY surprised to get a digital camera from Papa--she'd planned to use her own money to buy one in the after-Christmas sales. The girls were beautiful in their dresses from Grandma Ann. The boys loved their toys and having the whole day to play with them.

Alex talking

We've been really trying to figure out what to do for Alex. We definitely want him to speak well, which we have been assured can happen. However, there is quite a difference of opinion out there on the use of sign language. We've decided to learn sign language for now--it'll be practical for when he can not wear hearing aids, and it will be good for the rest of us to learn another language. (Although I'm feeling intimidated by it.) Meanwhile, it is FUN to see that Alex is enjoying hearing his voice. He now laughs and smiles and carries on baby conversations with you. (Enjoy the video!) The hearing aids were a nightmare at first because of ill-fitting molds. It's slightly better now, but I still don't think that we have a great fit on the molds--so they make that very annoying whistling sound. The other kids didn't know how to hold him at first--I struggled too --because you didn't want to make the hearing aids squeal or squish into his head. We're all getting more used to them now. My hats off to Alex, he's putting up with all of this with extremely good humor.

Christmas is Coming!

I was NOT feeling in a hurry to get out all of the Christmas decorations, but what do you know, the whole family helped put them up on Saturday. It looks great, and I'm especially enjoying the lights that Spencer designed outside. I took this picture at dusk so that you could see the lights--as well as the flowers still blooming in December! I am looking forward to Christmas, and I know it's time to kick it up a notch to get everything done by the 25th. Happy Holidays!

Alex

Alex is smiling and cooing at us now. What a cute guy! Lance is a GREAT babysitter. He can sit and talk to Alex and keep him entertained while I do dishes, laundry, etc. We received very disappointing results on Alex's hearing last week. The audiologist and ENT now call his loss severe to profound. He is on the borderline for if hearing aids will help him or not. If not, we hope he will be a candidate for a cochlear implant. This has been a very emotional time for our family. We were advised to learn sign language for his beginning development. Today I called the State School of the Deaf about loaner hearing aids and they signed me up with the State's early intervention program. Those are things that I never imagined doing. Thankfully, such programs exist. Having a child with a disability is completely overwhelming. I'm glad there's help out there. The doctors want us to do genetic testing and a EKG to determine the cause of his hearing loss and rule out other possible problems. Alex is in for a lot more testing and our family is in for lots more time in waiting rooms.
We're excited for him to get his hearing aids so that he can get to know our voices and the noisy and mostly happy sounds of our family. We shyed away from the blue hearing aids and went with the modest translucent ones. Fun to have a color choice in your hearing aids!

Halloween!
All dressed up and ready to go!