Friday, November 20, 2009
Second Implant Is In!
We are home from Alex's second CI surgery. NO MORE SURGERY! What a relief to have it over!!!
I came home to find this journal page that Adam had written for his homework. It says:
Alexes secont ccoclere in plant today!!!
Today Alex had his secent. coclere inplant on the other sid of his head and he will still be cute when he comes back allways be cute for ever and ever!!!
Sunday, November 1, 2009
Thursday, October 29, 2009
Overheard
Adam to Lance: Lance, have you seen my sponge shark?
Lance: No, Have you checked the peanut butter?
Lance: No, Have you checked the peanut butter?
Tuesday, October 27, 2009
Happy Halloween!
Sunday, October 18, 2009
The Miracle Will Have to Wait
So, Thursday was our big day.......cochlear implant activation! We looked forward to this day since we first learned that he was going to need implants. We took the whole family to the audiologist's office so that they could be there (minus Leah who was battling hand, foot, mouth disease). Alex responded well to the noises and pointed at the screen like he was supposed to. We left with the challenge for him to work through 8 programs--which would increasingly give him more sound as he was getting more used to it. Well, we were in for a HUGE disappointment. About an hour after we left the office, his feet were covered in spots. He has a raging case of the hand, foot, mouth virus. He has had a fever since Thursday, and he can not stand to even look at the cochlear implant processor. What a huge disappointment we've had. So, the miracle is on hold until further notice, and I hope I do not run out of Tylenol and Motrin. Lance also mentioned tonight that his mouth is starting to hurt. Oh brother!!!!!
Friday, September 18, 2009
Home Again, Home Again, Jiggity-Jig
We were released from the Children's Hospital this morning around 8:30 am. He now has a state-of-the-art Cochlear Implant installed on the right side. The surgeon said it all went well and that this new device (approved by the FDA on Sept 8th) is nice and thin. This means that you can hardly feel it under his skin. Yesterday Alex was so miserable and his incision was still draining so much that I couldn't imagine that he would be ready to come home today. But, oh, what a difference a day can make. He didn't even come home with a bandage around his head. He is crawling around and back to practicing his standing up skills. His face is swollen--and continues to swell. He always needs to be careful to not catch a cold until his ear is healed so that he doesn't have any more pressure in those cavities. I'll attach some photos from yesterday and today.
Thursday, September 17, 2009
Surgery
It's in! The first implant was successfully installed this morning. It has been a hard day for all of us, but the surgery went according to plan. Alex has been a brave soldier. I have not been as brave, but now that he is alert and hungry, I'm feeling more and more relieved. We are about to get a new gauze on his head, so I'll sign out! Thanks for ALL of your prayers and concern!
Sunday, September 13, 2009
Nervous
The most exciting day is coming for Alex...cochlear implant surgery on Thursday. I should be ecstatic, instead, I am so nervous! My son has the cutest, most perfect little head. I can't stand to think about it being cut into a flap and then sewn back together. I hate the idea of walking him down to surgery and then handing him over to someone else. I know he'll be scared and confused and feel downright terrible when he comes out of anesthesia. If I didn't really have confidence that this was the best course for Alex, I would SO back out.
When Alex had his baby blessing, he was blessed that he would have many opportunities to serve, receive an education, and have the life that we want for him. Alex received this blessing a few days after he had passed the newborn hearing screening in one ear. We were so relieved! Then, the day after his blessing I took him back to have the second ear tested. Surely, that darn fluid would be gone by now. The test took FOREVER! I waited in the foyer with the kids watching Tom and Jerry cartoons while Spencer went back with the audiologist. I started to get nervous about the length of time, but then, you never know with doctors. When they finally came back, it was all bad news. Not only had the second ear failed again, but the first ear had been re-tested and failed. How could this be? My son? Deaf? What? I couldn't believe it. I remember bawling with my baby in my arms, waking up in the middle of the night and bawling some more, trying to explain to my other kids how this could be...and not coming up with any of those inspiring or thoughtful answers. I remember Googling Cochlear Implants and calling Spencer at work to tell him about it. And all I could do was remember his blessing, given by a faithful priesthood holder (his Dad) which outlined wonderful opportunities for Alex. I am so glad that Heavenly Father worked it out so that we had some inspiration before the bad news. And now, a year later, I am still hanging on to that blessing. I know that the surgery is the right choice for him. My son will hear with his CI. I know he'll still be deaf, but he will hear birds, crickets, phones, grandparents, teachers, employers, and music. I can't back out, but you'll know I'll be bawling when I hand him over to those surgeons. He really does have a perfect little head. Please pray for my son on Thursday.
When Alex had his baby blessing, he was blessed that he would have many opportunities to serve, receive an education, and have the life that we want for him. Alex received this blessing a few days after he had passed the newborn hearing screening in one ear. We were so relieved! Then, the day after his blessing I took him back to have the second ear tested. Surely, that darn fluid would be gone by now. The test took FOREVER! I waited in the foyer with the kids watching Tom and Jerry cartoons while Spencer went back with the audiologist. I started to get nervous about the length of time, but then, you never know with doctors. When they finally came back, it was all bad news. Not only had the second ear failed again, but the first ear had been re-tested and failed. How could this be? My son? Deaf? What? I couldn't believe it. I remember bawling with my baby in my arms, waking up in the middle of the night and bawling some more, trying to explain to my other kids how this could be...and not coming up with any of those inspiring or thoughtful answers. I remember Googling Cochlear Implants and calling Spencer at work to tell him about it. And all I could do was remember his blessing, given by a faithful priesthood holder (his Dad) which outlined wonderful opportunities for Alex. I am so glad that Heavenly Father worked it out so that we had some inspiration before the bad news. And now, a year later, I am still hanging on to that blessing. I know that the surgery is the right choice for him. My son will hear with his CI. I know he'll still be deaf, but he will hear birds, crickets, phones, grandparents, teachers, employers, and music. I can't back out, but you'll know I'll be bawling when I hand him over to those surgeons. He really does have a perfect little head. Please pray for my son on Thursday.
Monday, June 22, 2009
Splish! Splash!
At the Listening Camp we attended, I learned that you could try putting a shower cap over your child's hearing aids so that they can have the fun of taking a bath and hearing all of the assoicated noises. I finally got around to making a cap today for Alex--and wish I had done it months ago! I was still nervous about trusting my 9 month old in the water with those $3000 hearing aids, so he had to wear 2 caps--poor guy. However, the sound must have gone right through because he immediately started talking, growling...and SPLASHING! He's never even tried those things before. Now, for the backyard pool!
Sunday, June 21, 2009
Update on surgery
SO....WE GOT INSURANCE APPROVAL! We will have BOTH implants covered. Hip! Hip! Hooray!
Father's Day
Happy Father's Day to all of you Dads out there. We enjoyed a wonderful day here. The kids surprised Spencer with a light saber --Yoda's light saber, for those of you in the know. We also had fun with the sandbox we made yesterday with Spencer's left-over materials from his wall. Now that the landscaping projects are mostly done, we love spending time out in the backyard admiring and enjoying all of Spencer's hard work. Happy Father's Day Spencer!
Monday, June 8, 2009
Two ears that hear, coming...September 17th!
Spencer, Alex, and I spent a long day at the Children's Hospital to determine Alex's eligibility for a Cochlear Implant. We began with the fun of a sedated MRI. I know that this is nothing compared to surgery, but I still hated watching my cute little boy having an IV inserted in his very plump foot. The nurses were pros, however, and minimized the trauma to us all. Alex's MRI showed that he had normal ear parts--and an auditory nerve. The surgeon said that he looks like an ideal candidate. Hip! Hip! Hooray! Alex will get his new ears "turned on" a month later. Alex should be able to hear birds, Beethoven, and be ready in time to answer the door for trick-or-treaters. :)
Pining Away
Anna left this morning for camp. I am one big mess! She's never even gone to a sleepover before--and now she's out of my reach for a whole week. I'm trying not to think about the lightning in the forecast or the bear incidents I've heard about. It's not working! I can't wait until she's back in one piece, showing us her pictures, and laughing about what a nervous mom I am!
Sunday, May 10, 2009
TV Star
Happy Mother's Day from Alex
We've been working with Alex to develop his hearing and speech--even at this young age! We are so VERY excited that he is now babbling consonants and vowels--and MA MA MA couldn't have come on a more perfect weekend! Thanks to Alex and Anna for making the video!
Thursday, March 26, 2009
Spring, Spring, Where Did You Go?
Off with her hair!
Sunday, March 8, 2009
Spelling Bee
Disneyland!
We made it to Disneyland! It was fun and exhausting. Our family's favorite ride was Soaring over California--very cool. I was hanging onto my seat with white knuckles. The kids couldn't believe it when they saw Bert and Mary Poppins walking down Main Street. The part that I'll always remember is getting the phone call from my friend--just as we were about to enter Mickey's Clubhouse--that the firetrucks were at our house and all of the smoke detectors were going off. That started the adrenaline pumping! It turned out fine--a dirty smoke alarm had set off the whole system. I was relieved that we had all made our beds before we left the trip since firemen went through the whole house. The miracle of it all was that I just happened to turn on my cell phone--which I usually leave off--the very moment that the firemen were about to break a window. Yes, we would have loved to have them get in the house any way they could in an emergency, but as it happened, I 'm thrilled I don't have to go window shopping right now. Here are some pics of our Disneyland trip and visit with Aunt Andrea and my cousin Phillip and wife Allison.
Friday, February 6, 2009
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!
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.
Tuesday, January 13, 2009
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
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