Happy Holidays

Hope everyone had a Merry Christmas. Christmas is actually a multi-day event for us. We had a party at the beginning of the month with one side of Eric's extended family. We spent the 23rd with Eric's immediate family, 24th with my immediate family, and the 25th with Eric's other side of the family. And if that wasn't enough stuff for the boys, Santa stopped by. As you can tell by the picture, it looks like Toys 'R' Us exploded in our living room. The boys didn't know what to play with first.Landon was right in the middle of it all. He has actually been wearing his CI's as full BTE's. He had a bad diaper while we were out the other day and I didn't have a spare bodysuit with me - he was wearing the battery part in pockets on his undershirts instead of with the babyworn clips. The only way I could keep his ears on that day was to make them the regular BTE's. We thought it would be a few years before he could wear them like this but they are actually staying on better like this than when we separate it and use the babyworn setup.
Landon is getting tooth #5. His top 2 teeth just broke through last week but he was still gnawing on everything so I looked in there tonight and one of his back molars on the right has broken through. He is cruising along all the furniture and thinks he's big stuff when he lets go with both hands- even if it is only for a second. The boys have started a countdown for Disney World. They can't wait until we go. We are definitely ready for a vacation.

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.

National Championship Game

For those of you who requested it, here's a picture of Landon in his LSU uniform and our internet friend Drew in his OSU uniform (thanks Jenny for letting us post him here). We met Drew and his family through the CICircle yahoo group. Drew was born 3 days before Landon and was blessed to receive his bilateral implants at eight months old. His mom has been a wonderful source for help on our journey since she is going through everything before me. I got the idea for the undershirts for Landon after seeing the setup they were using for Drew's bodyworn processors. My sister Cindy has been the sewing queen for me making a bunch of them and they are working out great. It's a lot easier than the babyworn clip that we initially started with.

We've "met" quite a few families on the CICircle that have young kids with implants and they have all been so helpful - any time we have a question or problem we just stick it out there and I always get tons of responses. You can check out some of the kids stories on their blogs - down on the right under CI blogs. I check them constantly to see how the kids are doing. I've been going back to some of the older posts on Drew's so that I can have an idea of when he was responding to certain things and it gives us an idea of what to expect from Landon. I know this is all off topic from what the picture is for but just wanted to send a Thank You to all those moms out there that have been down the CI path for keeping up their blogs and helping all of us newbies out.

As far as the picture - looks like Drew and Landon will be on opposite sides for this one. All I can say on that is Tiger Bait, Tiger Bait :-) The boys will probably sleep through the game anyway. Good Luck Buckeyes - but Go Tigers!

GEAUX!!!!!!

GEAUX Tigers!!

Nanny Tammy got Landon his Christmas outfit. Only in Louisiana does purple and gold work for Christmas. Hopefully he'll be wearing it as we celebrate a National Championship for LSU.

Littlest Tiger Fan

Santa visit

We took the boys for their picture with Santa. This year the mall went all out with something called Santastic. First, they have the kids write a quick letter to Santa with what they want. Next, they drop it into a mail box that is linked directly with the North Pole - when you open it cold air and snow fly up in the air. The kids then have to hit the Naughty or Nice button to find out if they've been good - Connor refused to do this. There was a big sign next to the picture setup that was a warning for those with pacemakers. When I asked the photographer about it he said there was a really strong magnet on the left arm of the chair. Needless to say we sat Landon on the right. I didn't know we would encounter problems with his implants and Santa Clause.
Landon didn't know what to make of him. It was a change from last year - when he was just staring off into space. This year he looked when the photographer shook the bells.
Garrett is our fearless one. He ran up first for his picture. Definitely not a shy one!
I think the only reason Connor took a picture was because I told him Santa wouldn't bring him any presents if he didn't. He wouldn't talk to him though - he said he wrote what he wanted on the letter so he didn't need to tell Santa.

Landon reacting to sound

This is a clip we had made of Landon reacting to sound. His brother Connor is the helper. It also shows Landon mimicking the AAhhh sound. Now he can mimic the Aahhh and Mmmm sounds in both long and short - Aaaahhhh and Ah, Ah, Ah, Ah. We've also noticed he has gotten a lot louder just in general these days. Whether he is making sounds playing or even his crying, he is definitely showing a difference with the implants on. In the morning before we put them on and in the evening after we take them off he becomes very quiet again.


We went for another mapping Thursday. We are going slower through these programs than the first time. With his first map we could go through all 5 steps on a program in a day and it wouldn't phase him. With this one, if we bump him too soon you can tell he gets a little agitated and fussy like it is bothering him. We have gone through program 1 and are almost done with program 2. We go back on Dec. 10 for his next mapping. She told us when we get those that it would be closer to his NRT (the testing they did in surgery). She will also do a booth test to see what levels he is hearing at.

Amazing!

Two weeks ago we could have taken Landon to the airport, sat him on the runway next to a plane taking off, and he wouldn't have blinked an eye. Fastforward to today - he can be playing with a toy and if you hit the drum or shake a rattle behind him he will turn around to find the sound. He is also trying to imitate some sounds. If you say Aaahhh - he will say it back to you; this is a new game for him. We can go back and forth for ten minutes and he'll keep doing it. He has also said Mmmmm a couple of times when we are feeding him. He did it with Eric first, and then a couple of days later repeated it when I said it. He had his first speech therapy since activation last Wednesday. Our ST was impressed with his motor skills - the last time she had seen him we were debating doing PT. He also turned to different sounds for her. We go Thursday morning for his next mapping session. I wish they would do another booth test so we could see where he is hearing at.

Trick or Treat

The boys had a blast trick or treating. Landon was only interested in his glow stick. Afterwards they helped MaMa and Aunt Tammy give out candy to the other kids. If their costume was too scary, Connor wouldn't give them any - he made Garrett or his cousin Gavin do it.

Landon's new trick. The day after activation he started pulling up on things to stand. Before he would stand there if you put him but now he pulls himself up.

Landon's Activation!

We went for Landon's activation today. He smiled when they turned him on. They did the left first and then the right. Now comes the fun part of trying to keep them on him. He hasn't tried to pull them off too much, but his ear is so small it is falling off just with him moving his head around. I had to ride back next to him in the van because every time he turned his head it would pop off.

Landon's Left Ear



Landon's Right Ear

One year ago today

One year ago today our lives took a detour to a new journey. Landon had failed the newborn screening in the hospital and of course we got the typical speech from the nurse in the hospital - it's probably just fluid, give it a few weeks, it will clear out and go for a retest. This was the day I took him for the repeat OAE - that was supposed to come back fine. By the time we went for this test, we pretty much knew he had a problem. Being that he was #3, we knew he wasn't responding like he should. I remember being in the hospital after having Connor and seeing him turn his head in the direction of my voice at only a day old. Garrett could run through the living room screeching and Landon wouldn't flinch an eye. Nobody can be that sound of a sleeper - Garrett can wake the dead with his high pitches.

The audiologist ran the test, told me he didn't pass again; but she wanted to run a test to see if he had any fluid in his ears. After that, all she could tell me was that he had some type of a loss, but that we wouldn't know the degree or type until we ran an ABR test. At the time, we didn't know there were degrees or different types of hearing loss. We just thought you could either hear, or if you were deaf, you couldn't. Has our world - and vocabulary - changed over the last year.

I came home and was glued to the computer for the next few weeks - trying to find out everything I could on hearing loss - even though we didn't get the official diagnosis until Nov.6 when they did the ABR. Surprisingly, his hearing loss hasn't been that hard to accept. I've never had this overwhelming grief that a lot of parents go through. I don't know if maybe it's because for the first five weeks we knew there was something wrong so I was prepared when she said he failed it again. Maybe it's because I haven't stopped long enough since the diagnosis to really focus on it. Maybe it is just naive on my part - because we haven't really gotten very far in this journey so maybe I'm not aware of everything that it entails.The main thing I've kept thinking since we found out is how lucky we are. There are so many birth defects and health problems that can effect children and we were blessed enough to have three healthy boys. Yes, one of them couldn't hear - but he could live like that. At that time we still knew nothing about cochlear implants or what they could do for someone - we just figured we would all be learning sign language. But it wasn't a life threatening birth defect. It wasn't a disease that was incurable. He would simply have to learn a new way to communicate. Imagine our surprise when we found out about cochlear implants and learned that not only would he be able to hear, but he would be able to speak and go to school just like his brothers.

It has definitely been a learning year. It has had it's rough spots - like getting through the surgery. I'm sure the next few years will have their share of challenges - teaching him to listen and talk. We can't wait for Monday to get here and get him activated. Maybe by this time next year we will have forgotten this date and instead focus on Oct.29 - his hearing birthday.

Boo at the Zoo

Landon - Little LSU Tiger

Garrett - Yoda when the ears are on; Qui Gon Jinn when he takes the ears offConnor the Power Ranger

Boo at the Zoo - with their cousin Gavin

Bath time is so much easier now that he can sit.

Countdown

Only one week to go until activation! Landon has become a crawling machine - nothing is safe. His favorite thing is to go play in his brothers' room. We are getting ready to take the boys to the Boo at the Zoo. Connor is going to be a Power Ranger, Garrett is Yoda (with his favorite color green lightsaber), and Landon is an LSU football player. We'll post some pictures later in their costumes.

One of his new things is to pat his chest. He also pats his mouth - we'll have to work on him making noise with it once he gets activated.

His incisions are healing really well.

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.

Happy Birthday Landon!

One year ago today, I was on the way to the hospital to be induced for high blood pressure. By the time we got there, I was already in labor (contractions every 3 min) and had to have it stopped so they could get the blood pressure under control. When Landon arrived 5 hours later, we thought all the surprises were over. Boy were we wrong! Leaving the hospital with our third son, we never would have imagined his first year would have flown by so fast because of the numerous doctor visits, tests, and therapy visits. I'm sure the next few years will fly by with teaching him how to listen and speak. We only have a few more days of buzzing - although I have a feeling his brothers are not going to let us change his nickname. I thought today would be a good time to take a look back at his first year before looking forward to his new journey - to hearing and beyond.

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One year check-up

This first year has flown by. We went today for Landon's one-year-old check-up and shots. He couldn't get one of them - the one for chicken pox - because he isn't exactly one year. We had to go early because he had to have the next dose of the HIB and Prevnar before his surgery. He weighed in at 19 lbs 3 oz and is 29" long. We are having his birthday party this weekend at Nanny Tammy's house. It's going to be a "learning to listen" party. We figured it would be a good time with all his cousins around to explain to them about the implant and some of the things we'll be doing in therapy. It's the Baby Sesame Street party set so one of the games we are going to play instead of stick the nose on Elmo is stick the implant on Elmo's ear. Nanny came up with the idea to make shirts for all the kids to wear that have their name and then their name spelled out in sign language. They came out so cute. We'll have to take a picture of all the kids wearing them.

Therapy this week

We went for Landon's monthly speech therapy session Friday. He's doing well with most of his skills. We still need to work on the sitting, but he is doing much better than he was. He is able to ride in a cart at the store and sit in a high chair as long as they have buckles to help keep his balance. We are giving him until after the surgery to see if this is related to his hearing loss. I've talked to quite a few who have said their kids had trouble sitting until they received their implants so we are holding off until he gets his. If it doesn't improve after that then we'll be setting up some physical therapy for him. He actually performed a couple of his new tricks - clapped his hands and waved bye-bye. He didn't do the lizard tongue - we forgot about that one. We have a few things to work on - getting him to stack blocks instead of just knocking them down, and getting him to put the rings back on the stacker instead of just taking them off.
We got the official orders from the doctor for the surgery so it's set for Oct. 1 with a post-op Oct. 2. It didn't have a pre-op scheduled so I'm going to have to contact them about that. With Dr. Molony being out-of-town the week before I'm not sure if they will want to do it a week before surgery or just check him the morning of. Luckily he's only had one ear infection so far so hopefully it won't be a problem.
Landon cut his first tooth this week. He's been miserable getting it. He's been running fever and only wants to be held by mom. Normally he's just a very happy baby so he's definitely not been acting like himself. It looks like the fever broke the night before last so hopefully he'll be getting back to himself soon. Connor's doing well in kindergarten. We are 2 weeks ahead of schedule in math and phonics. He'd probably be farther if I would let him.

Change in plans

We just found out today Dr. Molony will be out of town the week Landon's surgery was scheduled so now it looks like we'll be having surgery Oct. 1. Hopefully it won't get changed again.

Update for surgery

We have gotten a little more information on the surgery schedule. We have a pre-op appt on Sept. 26, surgery on Sept. 27 and a post-op appt on Sept. 28. We'll probably be sick of the car after that much time in it driving to New Orleans. It could be worse - I've seen where some families have traveled over 10hrs to get to a surgeon. Hopefully there won't be a lot of traffic everyday (who am I trying to kid - it's New Orleans - it's always a parking lot :) We also have a post-op Oct. 5. Landon will be a first for the surgeon - he hasn't done simultaneous bilaterals before. He said it only takes him an hour for one ear so it shouldn't be that long of a surgery doing both.

Landon's activation is set for Oct. 29 at 9:00. We are hoping to take video of it so we can post it on the website so everyone can see his first reaction to sound. We've been warned that most start crying but we have also seen some where the kids either show no response or are happy to hear. He smiles every day when he sees his hearing aids coming at him so hopefully he'll like the sound he'll get with the CI's.

New Rooms

Connor wanted me to put pictures of their new rooms so everyone could see. He picked the paint and wall decorations. It's a combination of Star Wars and outer space. Luckily Garrett is still at an age we can appease him pretty easily. He wanted a lime green room while Connor had to have blue so the compromise was green sheets for Garrett. The ceiling also has planets and glow in the dark stars - it's pretty cool looking at night.We made Landon's into a listening room for his therapy. We put pictures of the learning to listen sounds all around. We are still trying to find a couple of them but it's a pretty good start.

What a present!

We have a date. Landon will receive bilateral cochlear implants on his first birthday - Sept. 27. What a first birthday present! Let the countdown begin.

Connor had his first day of Kindergarten today. He was really excited to get started. We have decided to homeschool the boys. We are starting Garrett on pre-K activities and Landon will be having his therapy so all the boys will be having "school" every day. We can already see the benefits of having older siblings in Garrett - his vocabulary is great for someone his age (now we just need to get him potty trained!) He is like a sponge - soaking up everything that we are working on with Connor. I'm sure we will see definite benefits for Landon with his therapy by having older brothers to play with and learn from. He'll be getting extra learning time just by sitting at the table while I'm helping his brothers on their school work. I think the only trouble I'm going to have with Connor is keeping him on a schedule. As soon as he was done with the assigned pages of work he wanted to keep on going in the books. He probably would have done all of this weeks assignments today if I would have let him. I'm going to try and find some worksheets on-line that correspond with what he is learning so that he'll have enough work to keep him happy but will keep him building the skills and concepts at the appropriate rate. If I let him go at his own pace he'll be done with Kindergarten by Christmas.

We have approval!

We received an email from our case mgmt at the insurance and Landon has been approved for bilateral CI's! Now we just need a surgery date from the doctor and the countdown can begin.

Typical day - putting ears back on, and on, and on...!

Still waiting

We're still waiting for insurance to approve the surgery. I received an email from our case management worker at the insurance yesterday and they have reviewed the material (we gave them an expandable folder full of info on bilaterals) but the request from the doctors office for the surgery did not include a letter of medical necessity which they need. Of course when I contacted the doctors office he was on vacation this week and won't be able to get it to them until next week.
We had a speech therapy session this week. Landon is doing great on everything and meeting all of his developmental milestones - except for sitting. He's doing better then he was - has a lot better head control and is sitting in the tripod position. One of the physical therapist stopped by the room to get something and started playing with him so we asked her about the sitting. When she checked him she said it looks to be all a part of his balance and vestibular system being off because of the hearing loss. The back arching seems to be what is hindering him so hopefully he'll outgrow that soon. She said to just keep watching and make sure he keeps improving and if we decide we want to that she would work with him. His brothers didn't sit until 9 months and that was still with the boppy pillow to help balance and catch them. For right now the consensus is that it is a combination of just late sitters in the family and balance problems from not hearing. We'll see how he is doing in the next couple of months and go from there.

Boys check-ups

We went Monday to the doctor for regular check-ups. Landon had his 9mth visit - time has really flown. He weighs in at 18lbs 5oz and 27 1/2 in long. They started him on vitamins which he gags on every time you give them to him. Garrett had his 3 yr check-up and is 29lbs and 35 1/2 in tall. We went this morning for new ear molds for Landon. He is no longer the quiet baby who used to fall asleep while they did it. Now he fusses because he hates to be held still for any amount of time.

It's a Go

We just got the word from the surgoen that the CT scan looked fine so we have a green light for the surgery. Our next big hurdle will be to get insurance approval for the bilaterals. If they approve it right off then the surgeon will do the bilaterals in one surgery. If they only come back with approval for one and we can't get the appeals done in time then he'll have surgery for one side and once we get approval for the bilaterals he would have the surgery for the other. It would be a lot easier to have them done in one surgery and to be able to start with his therapy on both at the same time. Common sense tells you we have two ears for a reason so hopefully the insurance will get that too :) Everyone keep their fingers crossed!

4th of July

The boys had fun swimming at Aunt Tammy's on the fourth. Landon liked to watch the fireworks. We couldn't tell if he could hear them or not - sometimes he would react after a really loud one but the sound would be gone so fast you couldn't tell for sure. Next year should be really fun for him.

Where we are at

We wanted to let everyone know what we have been doing the last few months in preparation for Landon to get cochlear implants. He had a sedated ABR which tested up to 105db and he showed no response. In everyday terms, sound would have to be louder than an airplane for him to be able to hear it. He had an aided booth test where they tested him for reaction to sounds with his hearing aids on. He seemed to react around 75db so at least we know the auditory nerves are getting some stimulation from wearing the hearing aids. He had a CT scan done to check that everything internally is there for him to receive CIs. We are still waiting on the results from that - hopefully we'll hear back from the surgeon this week with the news. Once we get the okay from him and a surgery date we will be submitting everything to insurance for approval of the bilateral CIs.

Buzz's Journey

We wanted to give a little insight into how we came up with the title for the blog. When Connor was little we nicknamed him Monkey Boy because he was always climbing and jumping on things. Garrett got the nickname Meatball because he was small with these really round cheeks. When Landon was a few months old Connor told us he needed a nickname like they had. Anyone who has been around an infant with hearing aids knows the constant feedback noise the aids give off. Connor came up with the nickname Buzz because he said Landon's ears were always buzzing. Garrett liked the name because he was really into Buzz Lightyear from Toy Story - he was always walking around saying "To infinity and beyond". So that's how we came up with the title Buzz's Journey to hearing and beyond.

A little history

We have three boys - Connor (5 years old), Garrett (3 years old), and Landon (9 months old). Landon failed the newborn hearing screening in the hospital. We went for a repeat OAE at 3 weeks which he also failed. At 5 weeks he had an ABR test which showed he has profound bilateral sensorineural hearing loss. Having no experience with hearing loss, we had no idea what this would mean for our son and began to search for as much information that we could find. After looking at all the options, we decided the best thing for our son would be bilateral cochlear implants. This blog is a record of our journey to bring sound to Landon.