Happy Valentine's Day

I think Spencer had this photo taken for something official at school. It turns out that I don't have pictures in my photo folder of just him--or me--for that matter, so I'll post this formal picture. (I guess we always focus the camera on the kids.) However, it's February...and time to focus on my spouse. So, Spencer, here are ten reasons why I love you.
1) You told me I looked beautiful and ready to go on a date minutes after Alex was born.
2) You are encouraging us all to learn sign--and making us use it.
3) You don't complain that we can't spend the night in homes that have cats.
4) You've only once asked me to not make a particular dinner again.
5) You loved me even after you saw what a wimpy bike rider I am.
6) You didn't give up after I ran off on Valentine's Day when we were dating.
7) You are taking us to Disneyland.
8) You try so hard to be good.
9) You can make me laugh.
10) You are so handsome, of course!

Stone Fox

Leah has been begging me for weeks to read the book STONE FOX. I thought that I was too busy for quite awhile and kept putting her off. Anyway, last week I read it and loved it--but oh, how sad at the end! I knew that Adam would like the book, so I started reading it to him on Wednesday. We finished it on Thursday at the hospital while we were waiting for Alex's hearing test. Adam and I were both choked up at the end. I could hardly finish reading it, and Adam looked over at me with his voice cracking up and said, "I love you, Mom." He then gave me a hug. I don't know if he'll remember reading that book with me, but I'll remember it.

Bad News

So, we went for another hearing test (ABR) yesterday and learned that Alex has lost more hearing. He now has a profound hearing loss. I feel like the rug has been swept out from under me again. First of all, we understood that his hearing loss due to the connexin 26 was supposed to be stable, but now they say there are always exceptions. I do not like that Alex is an exception. Anyway, we are now crossing our fingers that Alex can have bilateral cochlear implants--the sooner the better. We'll start saving our money, and we're thrilled that our insurance will help a lot. Right now I can hear Alex and Spencer laughing together in the other room. Alex is a very cute baby, and he'll soon be a cute baby with a lot of expensive hardware on his head.

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.