Tuesday, December 9, 2008

Catching Up!



Courtney continues to amaze all of us. At her last hearing test she was almost hearing at the normal range across all frequencies. We all got a little emotional because we just couldn't believe it. She is now waving hi and bye bye with no visual cues. Shakes her head no when you say, "No." She babbles mama, nana, moo, ah ah, and screeches at the sight of her brothers. Tonight she heard our clock sing for the first time - I have waited a long time for that! And, she pointed and waved up to her baby dolls when I said, "Night night baby dolls." (No visual cues) She really can hear! I haven't done a very good job documenting her progress, I better get on it for 2009.

We did have a scare a few weeks ago since she is 15 months and still doesn't have any teeth. However, x-rays confirmed she has teeth, she is just taking her time getting them in! I was freaking out! Just to reassure me, the receptionist at the dentist office sent me a copy of the x-ray. I am tempted to frame it! Ha! Other than an upper respiratory infection a few weeks ago and a current ear infection she is doing great!

Jeremy continues to love school and is reading better and better everyday. He loves all of his teachers and is still quite the story teller. He is so good with his brother and sister - always helping them from putting Courtney's coils back on to putting on Logan's socks and shoes to go outside. I can't believe he is already half way through kindergarten! Where has the time gone!

As for Logan... he is a mess. We can sum Logan up in one story that I will make short. While he and Jeremy were eating a snack he decided to get on top of the dining room table and jump. When he did his head hit the light fixture which is like a giant bowl, and it shattered into a billion pieces. Somehow, we didn't have to go to the ER even though Jeremy sparkled with glass, including his ears! Just a few, and I mean a few, tiny cuts between the two of them and one GIANT mess to clean up! Logan is always into something if it isn't jumping on the table when no one is looking it is baby powdering his room, breaking ornaments, or hair spraying our room! We still love him all the same!

We also found out last week that Logan will be having eye surgery in BOTH eyes the day before his birthday on January 30th. It is an outpatient procedure and should take between an hour and a half to an hour and forty-five minutes. After Courtney's six hour surgery I feel like I can do anything! They said he would be fine to have a party the next day, just his eyes will be red. That is definitely reassuring!

For Christmas this year the kids made a special request for Santa to come this morning since Daddy had to work today until tomorrow. They thought that was pretty cool and can't wait until Bryan gets home tomorrow to open up the rest of the presents under the tree. Since I am off for a few weeks I am hoping to post a few pictures soon.

I hope everyone has a very merry Christmas!

Sunday, November 9, 2008

Still Sad

I wish I could say that I was one of those moms who is totally okay with Courtney's hearing loss and has accepted it and moved on, but I am not. I know she will be okay, we will do everything in our power to make sure of it. She has her CIs, she is making progress, but my heart still aches when I see her big, round, beautiful, hazel eyes absorbing the world around her. At least once a day I say to myself, "I can't believe you are deaf Little Girl."

It almost seems that the calm after the storm has hit and I am finally feeling again. We went 90 miles per hour from diagnosis to bilateral CIs all in a matter of 3months. I am getting used to all of the stares and questions (which I appreciate so much more than the whispers), but it isn't easy. I don't know if it is because she is so small and has so much equipment on her head or if it is because the equipment we have lights up?

I think it is the small things that make me sad. When she snuggles up and leans her head to "give love" the coils fall off and she can't hear us. When she doesn't feel good and wakes up from a nap upset, she can't hear me soothe her. She can't hear us come in anytime when she wakes up for that matter. If I want to rock her, the coils fall off. She can't hear the kid songs in the car because the coils fall off. Fall off, fall off, fall off!

I know that someday this daily lump in my throat will one day disappear, but for today I am still sad.

Wednesday, November 5, 2008

Behind

I am a little behind on my blogging life and I have to say I miss it. Things around here seem to have slowed down for the moment so I am taking advantage of the time I have. Courtney is doing amazing and we are very anxious to see how she does at her hearing test next week. Here is another clip of her and her growing receptive vocabulary. We realize that she may not be understanding exactly what we are saying, but she is definitely correlating the inflections in our voices to mean something without visual clues...

video

Halloween was a great time. We went to our church trunk or treat the Wednesday before Halloween where all three kids humored their mother by dressing up as Dorothy, the Scarecrow and the Tin Man. They were so cute. On the actual day of Halloween, however, Jeremy was convinced by his little friend, Malia, to be Superman and she would be Super Girl. There was no convincing him otherwise. So, on Halloween Jeremy went as Superman, Courtney as Dorothy and Logan as the Scarecrow. We went over to Mike and Angie's for dinner and then off to trick or treat with quite the gang!

On Saturday Bryan decided to take the boys camping at Canyon Lake. They had the best time. They rode their bikes, swam, roasted marshmallows and even got to sleep in a tent! Next time Courtney and I will have to go!

I am having technical difficulties with my computer and I am not able to upload any pictures of Halloween and the camping trip, but as soon as I can I will get them up.

Friday, October 31, 2008

New Sounds!

Since Courtney's activation on October 3rd she has begun to make baby noises. It warms our hearts every time we hear her!

video

Wednesday, October 22, 2008

Activation Clip

video

This is a clip of Courtney during her initial activation. It was a long day, but she did great! At this point during the mapping they were adjusting her second ear (left). She was hooked up to a computer so only she could hear the sound. After several times of all of us pointing to the screen when we heard a sound, Courtney did it all on her own. It was amazing! She now points up every morning when we first put on her CIs and throughout the day when she hears specific sounds. She is also beginning to make more baby gurgling noises, and it feels so good to hear them! It truly is an amazing journey!

(Be sure to press stop on the music bar on the right before you play the clip.)

Sunday, October 12, 2008

A Week of Firsts

This past week has been a week of firsts. We started off on Saturday in a bit of a frenzy getting ready for Courtney's birthday party. Bryan was on shift and Jeremy had a soccer game at noon. After Mom's quick run to Walmart we loaded the kids in the car and headed to Jeremy's game. I dropped Jeremy and Mom off and went on a food run. I returned just in the nick of time to see Jeremy score his first goal! Oh, he was so cute!! He threw both hands up in the air and cheered with excitement. He quickly scanned the sidelines and found us - just beaming from ear to ear. I wish I had it on film! They also won for the fist time, too!


After the big game we came home, cleaned up, and wrapped up the finishing touches for the birthday party. We had a great turn out. 25-30 of our friends came to celebrate Courtney's birthday. I know first birthdays are usually more for the parents, but this one really was. Even if Little Girl didn't give us a reaction when we all sang happy birthday to her, we knew she could hear us.



On Sunday Jeremy learned how to ride his two wheel bike! He had such a good time with Bryan and now wants to ride his bike everyday after he gets home from school.


To round out the last few days, Courtney got her first goose egg on her forehead! Logan didn't have any firsts, but he sure loves to play with his brother! I have so much more to update, but out of time and energy. I am working on getting the video clips of the activation and a few others up on the blog for all to see. It has been an emotional, exhausting journey, but amazing all at the same time.

Sunday, October 5, 2008

Activation Day

Friday, October 3rd was activation day. What a day! That morning we met with Dr. Syms so he could take a look at her incisions and clear her to go to Sunshine Cottage to be "turned on". Everything went well and we will return to see him on the 17th.

We had a few hours to kill in San Antonio before our 2:30 appointment so my mom, Bryan, Courtney and I had lunch and bought an internal battery for our video camera so we could capture the moment. We thought we had all of this time until one hour before the big moment we turned on the video camera and saw nothing but a black screen! Thank goodness for Best Buy!! By 2:10pm we were plugged in and charging up our new camcorder!!

We all felt pretty emotional walking into Sunshine Cottage. I became flooded with many of the same emotions I had the first day Bryan and I went there with Courtney. It all seemed surreal again. I felt my emotions brewing. I didn't want to have high expectations in the event that she didn't respond at all or cried, I just was unsure about it all. At the same time, I couldn't believe in 3 short months all that had happened. My mom finally was able to experience and feel the hope that this little school for deaf children gave us. She was touched by the "normal" chatter and excitement of a Friday at an elementary school. It definitely wasn't quiet!

There were 7 of us in the little tiny audiology office for Courtney's big day. I wasn't sure where to watch or what to do, but luckily they have a mirror so we could see her face no matter where we were sitting. Before we began we were informed that all 22 electrodes were in and all 22 functioning!! Very good! After a few adjustments on the computer, Jacque, our audiologist, told us she may hear something. She did and we absolutely scared her to death. I didn't know if I should cry with her because she was so scared or cry because I was so happy she was hearing something! I was able to keep my composure and we all were told to put our happy faces on while Jacque adjusted the levels.

Besides it being totally impossible to keep the processors on, Courtney did absolutely amazing! We were able to do the first mapping of the right ear and will return on Wednesday to do the left. After about 2 hours into it and all of us pointing to our ears when we heard the sound and then to the screen to start conditioning her, that little girl heard something and pointed her little finger all by herself to the screen. At first we thought it was a fluke, but then she kept doing it, it was AMAZING!

After about 3 hours of mapping she was exhausted, we all were. By this point overwhelmed was an understatement! Saturday didn't go so well and we only were able to keep the CIs on for 2.5 hours. Today, however, was great! A little toupee tape goes a long way! Courtney is so little that none of the baby accoutrements fit her, but we are hopeful that once her incisions heal it will get a little easier.

Here are a few pictures from post op to today!

Sunday, September 28, 2008

Surgery and Recovery



Surgery was a success!

It was definitely a long day, but in the end it was successful. We arrived to Methodist in San Antonio at 6am. While we were waiting we learned that Courtney's surgery wasn't until 10am and we could have arrived at 8am. Luckily Julie, our Parent Advisor with Sunshine Cottage, arrived with the most delicious cinnamon rolls ever. We all decided we wouldn't have slept anyways so it was no big deal.

We waited together (Bryan, myself, Julie and my mom aka Momo) on the 9th floor in the surgery holding area where we were to come later and finish recovering. Courtney was in good spirits despite not having eaten since 6pm the night before. She took a little nap and by 9am they took us down to sub-level 2 for surgery. Momo and Julie went to the surgery waiting area and Bryan and I took her back. After about 30 minutes we felt like something wasn't quite right. Sure enough they had it in her chart that she was allergic to penicillin and she is not. Once we got all of that straightened out we met with the Dr. Syms, the anesthesiologist, and the nurses. After I met everyone I felt much better and confident in the hands I was giving her to. One of the nurses was pregnant and due in November so I felt like Courtney had a little friend in there with her!

After the doctors left I put on my marshmallow suit and walked her back to the OR. I could feel the emotions brewing, but when I laid her down it almost felt like I was laying her down for a nap at home. She turned her little head to the left, started sucking her thumb and that was it. One of the nurses walked me out to the waiting room where I met Momo, Bryan, Julie and our friend Kim aka Wright. Just about all of us cried.

The nurses were great. They called when the surgery actually started which was about an hour after I took her into the OR and every hour to two hours there after. It was a long wait. We talked, ate, slept, played a word game, and laughed to get us through. The last hour was the worst. I became anxious and had an overwhelming desire to see her. First the audiologist came out with two big boxes from Cochlear Corporation and a koala bear (complete with a CI). He told us Dr. Syms was finishing up and she did great. He also tested the implants and had a response in both ears. About 15 minutes later Dr. Syms and his nurse came out and said everything went great as planned. RELIEF!! A few minutes later the anesthesiologist came in and escorted me back to recovery where I could finally see my sweet baby girl.

She was definitely out of it and didn't look like her, but none the less it was good to hold her. While I was back there they needed to take two x-rays. During this process her IV ripped out of her foot, but she seemed to be okay and didn't need to put it back in at that time. She threw up a few times even after a dose of fenagrin which is when the craziness began.

At first the nurses were tyring to convince me that it was normal to be throwing up and it was just phlegm. I wasn't buying it. I remained calm and they eventually took us back up to the 9th floor where she continued to vomit after yet another shot of fenagrin. About an hour later she started to run fever so they decided to admit her to Children's. Thank goodness. She had a difficult time with the medicine and anesthesia that made her vomit which in turn made her dehydrated and run fever.

Since she became dehydrated they had to put another IV. After a LONG night and a lot of fluids she bounced right back! We were thankful we were admitted because she bled more than normal in her right ear and had to have the bandages changed. She cried more during that than redoing the IV - it was awful! Luckily by Saturday morning she was almost back to her normal self! Dr. King, Dr. Syms associate, came in and gave us a thumbs up to go home. By 12:30pm we were on our way home.

I am so amazed at how great she is doing. My mom and I gave her Tylenol not because she was acting in pain, but because we thought she had to be. I know I would be if someone cut into my head, but she is doing awesome! I haven't allowed myself to even think about activation day, and now that I know she has made it through surgery, it is all I can think about! I simply can't wait.

Thank you all so much for your kind words, prayers and happy thoughts. We couldn't have done it with out them!

Thursday, September 25, 2008

Tomorrow's the Day

Okay, it's official I am nervous and freaking out! I know in my head everything will be fine tomorrow, but I keep envisioning handing my baby girl over to complete strangers. I am just not sure how I am going to do it! At the same time, it is so exciting how close Courtney is to hearing. We have planned her birthday party for October 11th so she can hear us sing to her. A special request by her daddy.

I will call those that I can and the rest please check back for an update tomorrow night or Saturday morning. The boys will be well taken care of with Bobpa as they are headed off to the county fair tomorrow. Thank you Momo and Bobpa!!

Wednesday, September 17, 2008

Wednesday, September 10, 2008

We won!

For the past two weeks we have been battling the insurance company to cover simultaneous bilateral cochlear implants and we finally won!! After involving my husband's employee benefits manager, more than one UHC manager, the UHC account representative for my husband's employer, Let Them Hear, our doctor, family and several friends we appealed and the decision was overturned. It was definitely an emotional rollercoaster!

In the end Baby Girl will get her CIs as scheduled on September 26th. Yahoo! Thank you all for your many prayers and positive thoughts. Mom...I can't thank you enough for everything you did from daily phone calls to research to just being a mom. Thank you!

Wednesday, August 27, 2008

Denied

We are on quite the journey! I prepared myself that we would probably have to file an appeal with our health insurance to cover simultaneous bilateral cochlear implants. I did not, however, think that they wouldn't even cover one! I have a plan. I know what we need to do, and will do it. She will have her surgery on September 26th and they will cover both of them that day. I will fight, I will advocate.

What I don't understand is the justification for denying the coverage: Sensorinueral hearing loss is not a medical condition. As for the simultaneous bilateral portion, that is because they claim that the treatment is not consistent with published clinical evidence. Bilateral CIs are unproven.

Not a medical condition? I just don't understand!

Monday, August 25, 2008

Jeremy's first day of kindergarten!


I don't think I have seen a kid more excited for school than Jeremy. He could hardly wait to get to Mrs. Bowers class. There wasn't an ounce of hesitation in him. He seemed to have had a great first day and is most certainly looking forward to tomorrow.

Sunday, August 24, 2008

From Dad

This is my first post to the Blog. Karen and I decided to add some music for your listening pleasure, and that's where I come in. I LOVE music, and all kinds as you can tell by our playlist. It breaks my heart every day that my daughter won't be able to enjoy music the way that I do. I ask myself all the time "Why Courtney?" How can this little angel not hear me when I tell her goodnight and and I love you, or when I play the radio in the car, how did this happen?? I think about it on my drives to the station ( about an hour ) and it just breaks my heart. I know with CI's that she will be able to have a great and fairly normal life ( thank God for technology ), but it still makes me want to cry when a great song comes on and I know that Courtney won't be able to hear it like I do. I know that this may sound somewhat trivial to some, given the fact that she'll be able to hear and aquire language with the CI's, which I am so thankful for that words cannot express. I guess I'm just a little on the sad side that I may not be able to share my passion of music with her like I do with my boys. Reality can be tough sometimes. I know this post was on the random side, but I felt like yappin' a little bit after we did the playlist on here. The songs on here just reminded Karen and I of our times together when we first met up to the present time. They jump all over the place, but I felt this Blog just wasn't complete without some music. Thank you all for replying to my wife on here, I know it really helps.

Saturday, August 23, 2008

70dB

Last Thursday Courtney had a hearing test. I was a little apprehensive about going by myself because the last time she had one was one week after we found out about her hearing loss and it was all I could do to keep myself from sobbing. I knew she had been hearing somethings, but I didn't want to get my hopes up.

At our session at Sunshine Cottage on Tuesday we discussed the speech banana. For those who don't know, the speech banana represents the range needed to acquire speech. I have included a sample audiogram that illustrates the speech banana and other levels of hearing. Normal hearing is in the 0-25dB range which would mean that a person could hear everything from 25dB until 110dB and beyond. Each level of hearing loss has a range and Courtney, being profoundly deaf, is in the 90 -120dB range. When she had her ABR done she had no response in either ear at 125dB. She can't even hear herself let alone a jet plane!

Typically, with hearing aids you can move up about 30dB's. It is also much easier to hear the low sounds (staying to the left on the audiogram) such as the hum of a lawn mower, or for speech the "mm" and "baba" sounds. Courtney, with her hearing aids on, was able to respond to speech sounds at 70dB! This explains why she heard a vacuum, hairdryer, bells, and occasionally, Bryan's voice. After we celebrated her hearing a sound in the booth, she would ever so sweetly look up and smile as if to say, "Mommy, I did it, I did it!" It was amazing. She went up by over 50dB, way to go girl! She has also been making a lot more noises, including "mmm". Most likely it is because aided she can hear herself making that sound.

As you can see, she is only at the 70dB level which isn't enough to acquire speech, but does means she is still a prime candidate for cochlear implants. The hearing test confirmed our decision to do simultaneous bilateral cochlear implants and the fact that she is hearing something. This is stimulating her brain and laying the pathways for when she does get her CIs. Basically, when we turn her on, it won't be the very first time for her to hear anything at all. They think that it will help her to be more successful with the CIs when she gets them.

So, if we can get through to the insurance company to see if they will pay for bilateral simultaneous CIs, we will be good to go!

Tuesday, August 19, 2008

September 26th

The surgery date has been set! September 26th, 7:30am at Methodist Hospital in San Antonio. We decided to go ahead and do simultaneous bilateral CIs. Bryan and I have agonized over what the best thing for Courtney would be, and we feel confident that doing two at the same time is what is right for us. I almost feel relieved to have made the decision and can move forward and mentally prepare for the 6 hour surgery.

We have been attending Sunshine Cottage regularly and have a new Parent Advisor, Julie, who is wonderful. The past few sessions have been about CIs, audiograms, and the infamous speech banana. Bryan and I both still feel so thirsty for information. I honestly don't know how anyone could get through all of this without the help of a school such as Sunshine Cottage. What a blessing to be so close to such an amazing place!

Jeremy will start kindergarten on Monday. I can't believe it! He has been counting down the days and absolutely cannot wait! He and Bryan had a father son weekend and went to Houston to see an Astros game, went swimming, school clothes shopping, and no trip is complete without a visit to the Bass Pro Shop. Thursday is meet the teacher night so we will go, drop off his school supplies, and meet his teacher.

Logan is our little stink! He is nothing but trouble! He is talking more and more and still loves to play baseball. We go back to Dr. McCash on September 2nd to find out if the 2 hour patching prescription is working. I sure hope so because I can't imagine trying to get him to wear it any longer!

Bryan and I are doing well and certainly keeping busy! My company will be doing some work out in California for at least the next 3 years so we are very excited about that. I am definitely enjoying being able to stay home with Courtney Tuesdays and Thursdays, but I know next week will be a rude awakening for all of us having to get up so early for school!

Friday, August 15, 2008

Poll

On Tuesday we returned to Dr. Syms for our CT scan results. Everything seemed to check out normal and Courtney is definitely a candidate for cochlear implants. We discussed the risks and benefits and once again came across the gut wrenching decision as to do one or two.

For parents of those who didn't have the option to do simultaneous bilateral CIs and could do it again would you do one or both? For those parents who are waiting until 12 months to do a CI, what would you do? And for those individuals who have gone from one to two, do you recommend it?

Any feedback would be great!

Friday, August 8, 2008

Ring, Ring, Ring!

Yesterday we saw Courtney, officially, turn in the direction of sound! Little Miss Sassy Pants turned to the sound of two different types of bells and one set of small symbols while we were playing a listening game at Sunshine Cottage. I was so focused on what my part of the game was - to point to my ear and say, "Mommy hears a bell. Ring, ring, ring," that I almost missed the moment! I never seem to be one that gets emotional in the moment, but when I reflect back I realize that that was the first time we have ever seen her respond (turn her head) to any type of sound. Hope!

We need that hope because we have made the decision to do simultaneous bilateral cochlear implants pending the CT scan results next week. We will keep you posted!

Tuesday, July 29, 2008

Much Better

The hearing aid vs. teether war might be coming to an end with the glorious help of a bonnet! Thank you to all who responded with tips and ideas, it certainly helped! It's too hot for pilot caps, but not for bonnets!

Today we had another excellent meeting with Lisa and Jacque at Sunshine Cottage. Everyday Bryan and I find ourselves with more and more questions. It is so nice to know that every week we are able to have answers to our many questions. One question that Bryan and I continue to struggle with is whether or not we should do one or two CIs in September. There are good reasons and research to support both options. I keep coming back to the idea that we do have two ears for a reason! I just don't know.

On another note we think that the hearing aids might be providing Courtney with some benefit. We discussed how unusually tired Courtney has been this past week, especially after she has worn her hearing aids for a while. This may be because she is hearing. However, distinguishing the sound is something different. The way that Lisa explained it was turning on a static radio all day long and having us try to make sense of it. We would be tired too! Courtney also turned two separate times when Bryan called out, "No, no, no!" from behind. It was as if she heard something, but wasn't sure what or where it came from.

Only time will tell what benefit, if any, Courtney is receiving from the hearing aids. Even if it was a fluke it was a welcomed glimmer of hope.

Logan is doing fabulous with his eye patch! He wore it for 3.5 hours the past two nights when he only has to for 2 hours! I figured it wouldn't hurt and if it wasn't bothering him, I wasn't going to take it off! So far a much better week for the Kohlers!

Thursday, July 24, 2008

HELP WANTED

Okay, I am taking it to the people.... How do you keep the hearing aids in a 10 month old? What about while driving by yourself in the car? Do you even try? I put them in and she takes them out at least once before we even leave the driveway. When we received them yesterday they told us the left earmold may need to be re-done and we may get a lot of feedback. We do, so do I continue putting that hearing aid on? Has anyone had this problem? Are we sure all of this poking and prodding isn't hurting?

Any help would be GREATLY appreciated.

Wednesday, July 23, 2008

New Look

It is only Wednesday and this has been a big week for the Kohlers. Two of the five have a new look! On Monday we took Logan to the Pediatric Opthamologist to follow up on his esophoria. As it turns out we will now begin treating amblyopia (lazy eye). This develops when one eye is used more than the other, causing the less used eye's vision to become weak. To treat it Logan will have to wear a patch on his good eye (left) for two hours every day to try to improve the vision in his right eye. Once the vision is equal to his good eye they will, more than likely, do surgery to straighten his right eye. Apparently there are two issues, poor vision and alignment. If we correct the vision through patching he will have a greater chance of his eyes working together after surgery. Fortunately, we don't have to worry about glasses anymore, just the patch!

The first day we only made it 45 minutes and an hour and 15 minutes today. The only way we could get him to do it was to use a timer. If he was still wearing his patch when the timer went off he could pick out a treat. Jeremy joined in the festivities and has been a pirate right along with Logan.

My Pirates

Today Courtney got her hearing aids! She did great! I had a lot of anxiety about what they would look like, what would people think, how she was going to do, how I would feel, etc. While we were at Sunshine Cottage we practiced putting them in and taking them out several times. She didn't seem to mind at all. We were all quite impressed with her. It wasn't until we were driving home that we caught her with them in her mouth. Once all of the fun distractions were gone, her tiny fingers would creep up and snatch one out. I would take it away, she would cry until she would find the other one and put it in her mouth. We did two rounds of this before we decided we should wait to put them in again until we were at home where we had better distractions.

Overall, she did awesome! We go back to Sunshine Cottage next Tuesday for more techniques and strategies. This week we are to focus on keeping the aids on and not asking her, "Can you hear that?" You don't realize how bad you really want to say that, it's kind of funny! Here are a few other things we are to do:

  • Keep a happy face on when putting the hearing aids on - we want Courtney to associate them to something positive.
  • Point to our ears when we hear something and say, "I hear a ..., that's a ....." so she will begin associating sound to ears.
  • Label everything auditorally (i.e. call Jeremy and Logan by their name not The Boys)
  • Don't use pronouns - everything has a name.
  • Don't panic!

Our hope now is that we don't find Jeremy or Logan with a hearing aid on or Courtney wearing a patch! It will be a miracle if we can keep everything and everyone straight! Tomorrow we are back to San Antonio for Courtney's CT scan.

Daddy and Courtney

Courtney's New Profile


Friday, July 18, 2008

California

We had an amazing time in California, but definitely did not want to come home! Going a day early gave us even more time to spend with friends and family. We started off our adventure with one night in Santa Rosa, picked up Jeremy who we hadn't seen for 6 weeks, and were off to Clear Lake for some R and R, visit with Aunt Pam and friends and Jeremy's 5th birthday. Unfortunately, it was so hot we just about melted and felt like we were back in Texas! It was even 109 one day!

After a few days in Clear Lake we came back to Santa Rosa and then headed up to Sonora to see Gigi, Grandpa, Aunt Debbie, Uncle Pat, and cousins Ryan, Matt and Mark. While we were there we went up to Pine Crest, one of Bryan's old camping stomping grounds. For some reason we have ALWAYS had some fluke thing happen to us while we are on vacation. This time we had a bat incident. Not a baseball bat, but a black bat with wings and all! To make a long story short a bat flew or fell, we aren't sure, into our spot at Pine Crest near the beach. After Bryan and Mark tried flicking it away with a sand shovel, the darn thing took a flying leap onto Jeremy who was in the water! Complete panic hit us all. Fortunately, Jeremy had a life jacket on and Bryan and Mark moved a lightening speed to get it off. There were no bites and in the end the bat tested negative for rabies so no shots. Yahoo!

After our bat adventure we went to Concord after stopping for lunch with Uncle Dave in Tracy. In Concord we were able to see Grandpa Charlie, Aunt Brooke, Aunt Jennie and cousins Zak and Maddie. We were even able to zip over to Sacramento for a quick dinner with Grandma Courtney. To finish out the trip we ended up back in Santa Rosa where we hung out with Aunt Tiffany, Aunt Kathy, Uncle Kevin and cousins Riley, Laney and Baby Kyle. We arrived back in hot, humid Texas late Wednesday night and are back to the daily grind!

Next week we have an eye appointment for Logan, two appointments for Courtney, one of which we hope she will get her hearing aids (Sunshine Cottage and ECI), a CT scan for Courtney (sedated) and I have a dentist appointment! Nothing like a little dose of reality when you return home from vacation!

Here are a few of our favorite pictures from our trip. Enjoy!









Friday, July 4, 2008

Off to California

We had several appointments this past week and got the "okay" to go to California! We decided to leave a day earlier so I will make this post quick and to the point. The appointments went well. We absolutely LOVE Sunshine Cottage and the people there. It is truly an amazing place. We are even contemplating sending not only Courtney, but Jeremy and Logan there if that is the route Courtney will be able to take. On Wednesday we went there to enroll in the Parent Infant Program. They gave us a lot of wonderful information and did hearing aid molds for Baby Girl. They took a picture of Courtney while they were doing this, she was so good and it looked like she had pink bubble gum coming out of her ears. As soon as I receive the picture I will post it.

We also met with Dr. Bonilla who followed up on last week's procedure and diagnosis. Her official medical definition is Profound Sensorineural Hearing Loss (PSHL). Basically, we were gently handed over to Dr. Syms (Neurotologist) who we met with yesterday.

Thursday was a bit more emotional as they did several hearing tests which Courtney failed. My head knows she will, but my heart still isn't communicating properly with my head! We have many options, but he will do a cochlear implant the week of her first birthday if we decide. Dr. Syms feels strongly that we should only do one implantation because after that she can only ever have a cochlear implant in that ear. The key isn't hearing, it is if she can hear well enough to acquire speech. If she can with one implant then we will wait because there is some amazing research and they have re-created the inner ears on several animals and then passed ABRs. Of course, if she isn't doing well enough before theses medical advances and technology, then we will implant both. As long as she is acquiring speech we can keep one and save the other!! The window of opportunity for the cochlear implants is from 1 year of age to 3. However, we want to do the cochlear implant at 1 if she is still a candidate.

So much for a quick update! We return to Dr. Syms in August and will have a CT scan before we see him to determine what our next steps will be. Because of Courtney's profound hearing loss the hearing aids may not work, but again, we have to exhaust all options.

That is it in a nutshell. Yahoo, we are off to California!

Saturday, June 28, 2008

Positive


It seems as if an eternity has gone by since Wednesday. We have learned A LOT about ears, auditory nerves, hearing aids, cochlear implants, evaluations, hearing tests and the list goes on! However, we are feeling positive and optimistic about Courtney's situation, at least right now...

The Sunshine Cottage has been an excellent resource for us and we have our first meeting with them this Wednesday morning. They have already sent us our enrollment forms for the Parent Infant Program which we will need to bring with us when we go. While we are there they will fit Courtney for hearing aids. We don't know at this point if they will work, but we have to exhaust all options. Any help from them is better than nothing and it should take about two weeks before we will get them. Fortunately, the hearing aids and the program are free until she is 3 years old. We just have to commit to going once per week to parenting sessions where we will learn techniques and strategies to help Courtney and our whole family. One of the Parent Infant Advisors, who has a profoundly deaf child, shared with us her story which offered much comfort and support. When I asked if Courtney truly has the possibility to be auditory and verbal, her response was, "Yes! I can tell you unequivocally, yes!" A brief moment of relief and hope.

In the afternoon on Wednesday we also have an appointment with Dr. Bonilla (Ped.ENT). We spoke with him Friday morning and he wants to wait to do a CT and/or MRI scan until we meet with Dr. Sims (Neurotologist) on Thursday. He doesn't want to radiate her until it is absolutely necessary. In the future to determine if Courtney is a good candidate for cochlear implants we will have to have a CT and or MRI to ensure all parts of her ears are atomically correct. From what Bryan and I understand, both doctors will work together and begin full assessments and a complete work up on Courtney this week. Dr. Bonilla is going to "introduce" us to Dr. Sims before our appointment and have the written ABR results to him as well.

Again, we feel very positive about Courtney's future and we are 100% confident we are in good hands. We are trying to take everything one step at a time and educate ourselves on raising a deaf child. A great resource, among many, is http://www.raisingdeafkids.org/ .




Wednesday, June 25, 2008

"Now is the Time to be Deaf"

We are definitely in a surreal world today as the Audiologist and ENT told us that Courtney has a profound hearing loss. It just wasn't what we wanted to hear. We are overwhelmed with emotions - heavy heart is an understatement.

Before the procedure the doctors told us it would take about 30 minutes. After an hour and ten minutes or so I finally had them call to see what was going on. She was still in surgery was all they could tell us. Within ten minutes the Audiologist and ENT walked towards us. I knew immediately something was wrong. They normally call you on the phone, but they pulled up a chair to talk. My heart sank and I cried.

They told us she was doing fine, they put the tubes in, but after several tests there was no response in either ear, which translates to a profound hearing loss. Dr. Bonilla discussed that we will grieve and that if we don't now we will at some point. Bryan's eyes began to water and turn red. He told us we will have to begin a series of tests to ensure that there isn't something else in her body causing the hearing loss. We have to schedule a CT scan of her head and brain and see a neurologist to discuss the possibility of cochlear implants. They reassured us that we caught it early and that technology has come a long way in the last ten years. As Bryan put it, "Now is the time to be deaf." The doctor felt that she probably was born with this hearing loss and they are looking into her records as to why and how she passed her newborn hearing screening test. Dr. Bonilla expressed that it is okay to hop on the Internet and to bring any questions, concerns, etc. to our appointment next week where we will discuss Courtney's treatment plan.

After we finished with the Audiologist and Dr.Bonilla they took us back to see Courtney. We both lost it. Seeing our sweet baby girl not awake yet from surgery, knowing that she couldn't hear us was more than we could handle. As we drove home we realized that our whole life changed today. We know that we will do anything and everything we can for her. Tomorrow we are headed to Sunshine Cottage School for the Deaf (www.sunshinecottage.org ) to get more information and sign up for the Parent Infant Program. We aren't sure what to do with ourselves, but we are certainly trying to stay positive.

Thank you all again for your thoughts and prayers. We will keep you posted on our new journey!

Wednesday, June 18, 2008

On another note...


Jeremy is having the time of his life in California! We miss him, but are so thankful he is able to have this time with Momo, Bobpa, Gigi, Grandpa and his cousins. He has swam almost everyday and loving every minute of it. We can't wait to see him in July, especially Logan. We love you buddy!

We have hope!

Today Bryan and I took Courtney to have her hearing test and ENT consult. First, we met with the audiologist to check for fluid and do a hearing test. The test for fluid was consistent with fluid in the ears. Relief. I was so worried that we were going to go in and there wasn't going to be any fluid, I needed some hope. Next, we went into a sound proof room where the audiologist checked her hearing. Again, not even a blink of an eye up to 70 decibels (the most she could do without the use of headphones). Needless to say she completely failed the hearing test which we knew she would.

We then met Dr. Bonilla, an amazing doctor, who confirmed there was fluid in both ears, maybe even more in her right ear. She has had more ear infections in her right ear than her left. He felt that because she passed her hearing screening at birth, the fact that Logan has a history of ear infections and tubes, she has had several ear infections and there was fluid in her ears that there is a good chance that all she needs is tubes. However, to rule everything out he suggested that we do the ABR test at the same time we do the tubes. He also suggested that we do this sooner than later and scheduled the procedure for next Wednesday at 1pm.

Bryan and I felt so good about Dr. Bonilla and that he made the same suggestions that we were prepared to advocate for. Again, relief! He expressed the importance of early detection so we can get the correct treatment needed if there is a hearing loss. If there is he will do a complete health overview to rule out anything else in her system that may be causing the hearing loss.

In the end, he assured Bryan and I that there can be a significant hearing loss with fluid in the ears. We are hopeful that by next Wednesday our baby girl will hear us and turn our way when we call her name. Again, we thank all of you for your thoughts and prayers. We will keep you posted!

Monday, June 16, 2008

Quick Update

This morning we called the Pediatric ENT and were able to get in on Wednesday. They will do a hearing test and then we will meet with the doctor. We spoke with a lady at The Sunshine Cottage School for the Deaf, www.sunshinecottage.org , where they do hearing evaluations as well, and she said that there is a good chance it could just be fluid in her ears. She recommended that we push for an ABR test if the doctor is going to do tubes. Apparently this is a wonderful test that has to be done in babies older than 6 months under anesthesia. Through this test they can see the sound all the way to the brain and see the brain response. Along the way if there is a hearing loss, it will tell exactly where the problem is. If we can get this test done we will know sooner than later if it is a true hearing loss or not.

She also confirmed that Dr. Bonilla is a great doctor, so we feel that we will be in good hands! Thank you for all of your prayers! Hopefully we will know more Wednesday.

Saturday, June 14, 2008

Nothing

Nothing is what Courtney hears...

She is only 9 months old and has already had 5 ear infections (7 if you count the two that were still infected after one round of antibiotics) and 1 perforated eardrum. All of this prompted our doctor to refer us to a Pediatric ENT for possible tubes. At her last appointment I discussed Courtney not making any sounds other than blowing raspberries. I know you aren't supposed to compare kids, but both Logan and Jeremy were doing this long before 9 months so I was beginning to become concerned. Our NP reassured us not to worry, but to definitely schedule her 1 year check up with the actual doctor just to be sure.

A couple days passed and I couldn't get rid of the feeling that she really should be babbling more. Finally, I decided that if she couldn't hear she wouldn't be able to imitate sounds which might be why she isn't "talking". I had already put Courtney down for bed, but I just had to know if hearing was the problem. We have the never wake a sleeping baby rule at our house, but I went ahead and began a series of "tests".

I walked over to her bed and began quietly calling her name. Nothing. I tapped on the side of the bed and called her name louder. Nothing. I didn't want to wake Logan in the process of all of this, but I really had to know. I thought maybe she is just REALLY tired so I began clapping about six inches from her ear. Nothing, not even a twitch of an eye. My heart sank and the panic set in.

The next day Bryan and I called every ENT from Austin to San Antonio and couldn't get in anywhere. In the meantime I, along with my friends from work, continued to "test" her. We banged pots and pans, snapped, put ringing phones behind her, yelled, anything we could think of and she never responded. We were able to get an appointment with an Audiologist to do a hearing test Tuesday morning and I kept another appointment with a Pediatric Audiologist on Wednesday who will also do a hearing test. I know they will confirm what we already know, but we are hoping that if the eustachian tube isn't working correctly she may have fluid behind her ear which can inhibit hearing. Deep down this is what I desperately hope is the case, but I want to be prepared for the worst.

We are concerned and want to know the cause of the hearing loss so we can move forward with whatever she needs. Our hearts our heavy...the worst thing for a parent, besides losing a child, is that there is something wrong with them. She is so happy and has the sweetest spirit it is difficult to imagine that anything could possibly be wrong with her. As if she knew how sad we were, she did begin waving bye-bye yesterday to warm our hearts! Hopefully she just needs tubes, but we will keep everyone posted.

Sunday, June 8, 2008

The Masses

I finally decided to join the masses and create a blog. I figured it would be easier to keepeveryone updated since I inevitably forget to email someone when I email pictures, etc. We areall doing well and enjoying our summer, especially Jeremy. He is in California and has been there since the end of May. I had to go back for business so I brought him and Courtney, but Gigi (aka Ruthie) and my mom (Momo) talked me into letting him stay until we all come out in July. So far it sounds like he is having the time of his life and doesn't seem to miss us at all. I am not sure if that is good or bad!



Logan is definitely two! He loves baseball and carries around a bat, ball or glove almost all of the time. He is talking more and more and we have decided he will be the clown of the family. Logan still has to wear glasses, but we are going to a pediatric opthomologist in July for further treatment of the esophoria in his right eye. Other than that, he is doing great and his asthma isn't bothering him so that is a plus!


Baby girl is getting bigger everyday. Last week at a follow up appointment she
weighed in at 16 pounds 12 ounces. This is the same as what Logan weighed at his 6 month appointment and Courtney is almost 9 months! She is all girl and I love all the pink, dresses and bows. She absolutely loves her big brothers and is a very good natured baby. (After the first four months!) She is starting to inch along, but seems to be too layed back and doesn't want to sit all by herself. Pretty soon I will be wishing she was just rolling back and forth not getting into everything. We love her all the same!

Bryan and I are great and finally got to get away in May when my parents came to visit. We went to Lakeway Resort and Spa in Lakeway (near Austin) for an extended weekend. We almost didn't know what to do with ourselves, but we had a wonderful time and aren't going to wait 5 years to do it again!