Wearing his CI's

I've gotten asked quite a few times about how Landon is wearing his CI's and the setup we use so I figured I'd post the pictures here for everyone. We use the babyworn setup so the part on his ear is smaller and slide the controllers into pockets on the back of some onesies my sister made for him. I'm no seamstress so lucky for us she is.





Once we put his shirt on, it helps hold the cables on and keeps them hidden so they don't catch on stuff and pull his ears off.




We had trouble with the clips that came with the babyworn catching on things or brushing against stuff and they kept popping off. This has worked out great for us.

Happy New Year!!

Is it 2008 already? What happened to 2007? This past year has flown by. This time last year, we had a road full of hurdles ahead of us. Landon had his hearing aids but that was it. We still had the CT scan plus other hearing tests to run to make sure he was a candidate for CI's. We didn't even know what surgeon we were using.

It seems like the first part of the year drug on because we were just waiting to hear from the surgeon that he could get the CI's Then came gathering information to get insurance to approve bilaterals - which surprisingly they did very quickly. Then the year started flying. It seemed like in no time surgery was upon us. It was definitely harder on us and our family than it was on Landon. By the night of the surgery he was back to his old self. I think it took the adults a little longer to get over it. I know the biggest hurdle is ahead of us - teaching him to understand sound and to talk - but it feels like the worst part is behind us. Hopefully 2008 won't be as stressful as 2007 was.

It's amazing to think how much can change with just a little time. If Eric or I would have been born deaf, we would have been raised in a world of silence with limited communication - only being able to talk with those who know sign language. Fastforward to now and we are living in a time where children born deaf are able to learn to hear and speak and have no limitations on who they communicate with. If you check out Rachel and Jessica's blog in the blog list, Rachel is a gifted college student who is also fluent in French. Did I mention she was born deaf? She was in the trial group that received the first CI's and she recently went bilateral. She spends her vacations from school traveling in France. I took 4 years of French in high school and could probably count on both hands the words I can say. It is amazing to see how far these kids can go.

In just the past year the CI world has changed. When Landon was first diagnosed, we met with a CI audiologist (not the one we are using) who showed us the implant and how it worked. When we asked if they would do one or two ears, we were told surgeons only did one ear, that no one did both ears. You had to save an ear for future technology. By the time we learned Landon was for sure a candidate, it was pretty much a given he would be getting bilaterals. The only question was one surgery or two. Now it is getting to be the norm to have simultaneous bilaterals. What a difference a year can make. I'm sure in a few more years the CI technology will probably get to the point where the whole device is fully implantable. It will be interesting to see in 20 years what the norm will be for babies born deaf.

Hope everyone has a great 2008!

Quiet anyone?

I had to share this picture. I put Landon in his bouncy seat watching Baby Mozart so I could mop the kitchen floor - without his help:) This is what I found one of the times I checked on him.
I guess he decided he wanted some quiet for his nap - I usually leave his ears on from the time he gets up until he goes to bed at night.

Post-op

We just got back from New Orleans. The rain and the traffic made for a long trip. As his dad said, everything looks great. Dr. Molony took the nasty tape strips off and now we are just waiting for activation day. This time last week he couldn't sit by himself at all. Now he crawls everywhere he wants to go (and some places you don't want him to.) He can also go from crawling to sitting and back by himself. You can no longer put him on the floor with some toys and think he is going to stay there and play. He takes off following you wherever you go. It's amazing how far his gross motor skills have come in just a weeks time. The doctor asked if he was having any balance problems after the surgery and was surprised when I told him it was actually the opposite - all his balance problems cleared up after the surgery.

Everything Looks Great

Landon has just completed is latest checkup and has received a clean bill of health from the Dr. Moloney. He still has a small bit of swelling in the neck area, but it seems to be decreasing on a daily basis.

On another note, Landon began to belly crawl and sit up 2 days after surgery. I am astounded at his progress over the past 4 to 5 days. Last night while I watched LSU beat Flordia again, he was able to sit up own his own from a prone position. It is really exciting to see his progress...

Bouncing Back

It's amazing how fast these babies bounce back from surgery. Landon is pretty much back to his old self again. He does have a lot more separation anxiety - he won't go to anyone else but me right now. He is back to playing on the floor with all his toys - as long as I'm sitting right there with him. Of course the last time he was taken from me they cut his head open so I'm sure it's just a side effect of that. Every day it gets better so he'll be back to his friendly self before long. We gave him the tylenol with codeine the first two days for the pain and then just went to regular tylenol. So far today he hasn't needed anything for the pain - he's been happy and playing all day.
We have noticed a few things that have changed with him since the surgery. He no longer does the scooting on his head with his back arched. He crawls on his tummy with his head up. He also doesn't throw his head back like he did when you hold him. He is doing a lot better with his head control and sitting by himself. The surgery has definitely made a difference in his balance issues.

This is the day after surgery - one of his ears sticks out a little but the other one doesn't.

The first side they did.

The second side. You think they could have at least shaved the same amount. Oh well, it is already starting to grow back so it won't be long.

We're Home!

We just got back in from our stay in New Orleans. Landon was able to have his surgery yesterday - he still had a little fluid in the right ear but the doctor said it wasn't enough to need to cancel. It actually went a lot faster then we thought it would - he was only away from us for 4 hours. We got to pre-op at 6:15 and they took him to the OR at 7:30. At 8:30 we got the message that surgery had just started and at 10:30 Dr. Molony came out and said everything was done and the audiologist had just gone in to do the NRT testing. By 11:30 we were back in recovery with him. It took him most of the day to sleep off the anesthesia (and the small dose of morphine they gave him right after to help until the tylenol had kicked in) He would wake up, take a bottle, and then go right back to sleep. Around 10:00 last night he woke up wanting to play. He kept trying to roll over but couldn't because of the large bandage on his head. We went for his post-op this morning and the doctor took off the big bandage so he just has the tape strips over the incisions. We talked with the audiologist for a minute and she said they got full insertion of the electrodes on both sides and that everything tested perfectly. He was playing peek-a-boo and pat-a-cake in the office so he is pretty much back to his normal, happy self.

Back in the hotel following surgery - he ended up spending the day in a diaper and towel because he kept soaking through everything after all the IV fluids they gave him.

Leaving the hospital to come home

On the way to his post-op in front of the Cochlear Implant Awareness Month display. Louisiana finally does something to be proud of. They are the first state in the nation to declare October as Cochlear Implant Awareness Month. Landon was the first surgery done during this awareness month and the first simultaneous bilateral CI surgery done.

Keep your fingers crossed!!

We took Landon to the pediatrician for his pre-op today - his surgeon is on vacation this week. We had a little surprise - he has a slight ear infection. He started yesterday with a clear runny nose but seemed to be feeling fine so we were hoping it would go away on its own. They took his temp when we got to the doctors and it was 101 - while he is laughing and playing peek-a-boo with the nurse. His right ear was red with a little fluid so they put him on an antibiotic. They checked his white blood count and said it was normal. As of right now we are still on for surgery. I spoke with the nurse at the doctor's office and she said to go ahead as scheduled (as long as his fever doesn't go any higher). On Monday Dr. Molony would look at it and make a decision one way or the other if he can have the surgery. He hasn't had fever since we left the office this morning so hopefully it will clear up and we can go ahead with the surgery. I thought for sure when I told her there was fluid in his ear she would say we needed to reschedule but she just said we'll see on Monday morning what his ear looks like and as long as he isn't running fever he would probably have the surgery. Like we weren't stressed enough over the surgery now we have to worry if he is even going to have it or not or if we will have to go through all the worry again a few weeks from now.