5dB

Courtney has a profound hearing loss. When she was diagnosed in June of 2008 she had no responses at 120dB. She maxed out the equipment. Now, however, with those amazing "ears" Sassy Pants can hear speech sounds at 5dB and can hear at 15dB across all frequencies!!! I am so excited I don't know what to do with myself!!! I never thought normal would be so amazing!

3 Reasons I am Thankful for CI's

1. The kids and I were at a fun indoor/outdoor restaurant yesterday for lunch with a friend and her kids. As my friend, Erin, and I were chatting away I heard the loud speaker, "Will the mother of Courtney please come to the front." I wasn't sure if Courtney was hurt or what. I walked in to see Courtney standing in front talking to a worker. As soon as she spotted me she said with both hands out to the side, "Mommy, there you are! I couldn't find you!"

While I am so happy she can say all of that, I am most thankful that my profoundly deaf little girl can say her name. No signing. She can tell someone when she is lost. She can tell them her name! She is independent. Something 2 and a half years ago we didn't know if she would be able to do. I love it!

2. This morning Courtney comes running into my room and says as she points to both of her ears, "I want my ears on." I tell her to go get a battery. Without her ears on she says back, "Get a battery?" I sleepily nod my head yes. A few minutes pass and she bolts back into my room and yells, "I can't find my cochlear implants!" Yep, at 3 1/2 she knows she wears cochlear implants and knows they are different than hearing aids. She knows when they work, when they are on the wrong ear and when they need a new battery. And she can TELL me all of that! She amazes me! I love it!

3. I love the sound of her sweet voice. Something she wouldn't have without CI's. What is funny is when I tell her, "Oh Courtney I love your voice!" She always says, "Mommy, I'm not a boys I am a girl." I guess voice and boys sound similar! It cracks me up every time! Her sweet voice the other day saw mine and Bryan's wedding picture. She told me I was a princess and Bryan was the bad guy! I love it!

Happy 3rd Birthday Courtney!

Swimming

Since we found out about Courtney one of the things, among many, is how she could swim. I know how kids swim and learn how to swim, but how would we teach her when her CIs were off while in the water. I haven't looked into the heavy duty swim caps she could possible wear with her CIs yet. I don't really understand them to be honest! So without "ears" on we have embarked on this humbling experience!

First, Courtney LOVES the water! She has no fear, which is scary! Since it has been so hot, a few weeks ago I took all 3 kids by myself to the YMCA. Yes, I know, I am crazy! The boys were awesome. They knew where to stay and always called out when I called to them. Courtney was a crazy girl! She would get out, run around, jump in. Over and over again! The other people in the pool were looking and thinking this girl does not behave as I kept telling her not to run, etc. Everyone was nice and once I explained they helped me try to contain her! While I was dying inside because she couldn't hear me, she was having the time of her life. She has also discovered if she takes her CIs off and doesn't look at me or if she closes her eyes then she doesn't have to obey. Oh, it was crazy! There was none of this I am embarrassed to be in a swimsuit on my part. I was leaping up, down, running through shallow water, up on the edge of the pool, etc. to ensure she didn't go under.

After about an hour I was exhausted! I put her "ears" back on and talked about everything we did in the pool. A few days later we went again to a friend's neighborhood pool. She did great! This time she wanted to wear a life jacket since Logan was. We stayed in the kitty pool and she go the hang of getting her feet under her, hollering for help when she needed it, etc. After 3 hours we were done and I have to admit I was glad to put her "ears" back on to talk about our day and hear her voice again. She talks a little without the CIs on, but nothing like when they are on.

I am working on an experience book to give her the language for all of the things we do and see while at the pool. Especially no running or jumping in without an adult!! I am glad we finally "dove" into swimming! You can't live in Texas and not get in the water!

Blood Work Results

After a horrible reaction to the super strong doses of antibiotics, Bryan and I decided to take Courtney off of them and call the doctor Monday. She was so sick. We just couldn't fathom giving her more when all of the blood work had been done and she may not even need the antibiotics. The infectious disease doctor is only in the office on Tuesdays, the rest of the time she works out of a hospital. Anyways, I called Monday and she happened to have a cancellation for today. Relief!

The blood work was in and things look good. Her immune system is good and intact. Her titers, however, showed lower than she would like. She said that they weren't "stellar". Basically, her body has a difficult time making antibodies to fight off some strains of the strep bacteria. So, the Pneumovax that she just had last week and the new Prevnar 13 she will need to take in a few weeks will help build those numbers. She will re-check her blood levels one month after she has the Prevnar vaccination. The culture of the drainage this time came out to be viral, not an infection. (This means we do not have to continue the two antibiotics that caused her to be so sick! Yahoo!) She feels that the drainage is part of Courtney's vicious cycle. Her eustachian tube doesn't function correctly which is why she has tubes so her ear will drain. In a non-implanted person this would not be an issue. Since there is a foreign object in her ear any drainage poses a threat. The hope is as she continues to grow her eustachian tube will develop and work correctly and will "grow out" of ear infections.

Of course, Courtney had drainage today and since she has had so many infections she is putting her in a prophylaxis for 6 months. In the meantime if we have any questions or continue to have ear infections to go back and see her. She is great!! I am keeping my fingers crossed that we can boost her immune system and that in 6 months we can stop all medications and be healthy!!! All her allergy testing came back negative except for cats!! Yep, she is allergic to cats! Thank goodness we don't have any pets, unless you count a fish!?

Plan of Action

After my last discouraging doctor's appointment, etc. I decided our best approach was to take action and make an appointment with an infectious disease doctor. In fact, the doctor we ended up seeing was a pediatric infectious disease doctor! Even better!

Two weeks ago this Thursday Courtney finished a 10 day round of augmentin and one week's worth of antibiotic drops. I was starting to either worry or hope, I am not sure which one, that her ear was going to be all cleared up and we weren't going to have any more problems. This would be good if it were really the end, but bad since we had the appointment scheduled with the doctor for today. Did the antibiotics really work? If it wasn't draining yet, would the doctor still take it seriously and move forward with an action plan? I just wanted a concrete plan.

I think with a little divine intervention, Courtney woke up this morning with drainage. I know this seems terrible that I wanted her to have drainage. It is kind of like that squeak in your car that you want fixed, but whenever you take your car in it doesn't do it! You want it to squeak, I wanted it to drain! And it did! So here is the plan!

We had blood work done today which wasn't easy, but she did it. Thankfully we did at Methodist Children's so they had tiny needles, yet it still took a stick in each arm to get enough blood for today. She has to go back again to do the rest because they are only allowed to take a certain amount of blood in one day. The bottom line is the doctor wants to check her immune system more thoroughly, boost it and find out why she can't clear up the infection completely.

To start off we are on two types of antibiotics for 14 days versus the normal 10. She is on a stronger dose of augmentin and rifampin. She did warn me, thank goodness, that rifampin will cause her tears, urine, snot, etc. to be orange so don't freak out! She is leaving drops to Dr. Not so Happy to prescribe tomorrow at our follow up from the ear infection that is already back! We will go back to her in two weeks to get all of our results and determine our next steps based on the results, etc.

In the meantime she ordered a regular ol' CBC which will basically measure the concentration of red blood cells, white blood cells and platelets in the blood. She also ordered autoimmune deficiency testing for subclasses Ig C, Ig E, Ig M, Ig I, Ig G, and Ig A. In addition to that she did the pneumococcal titers (14 serotypes). This will determine if Courtney fails to make an antibody response to any of the 14 serotypes. One of the tests we have to still do is the allergy RAST test which will determine if the drainage is allergy related and the infection is really a secondary infection. Apparently this test alone takes up the one day allotment that can be taken from Sassy Pants. After the blood draw, she got a dose of the pneumovax! The thought behind this was to boost her immune system and cover more types of pneumococcus. And last, but not least she ordered a streptococcus pneumoniae urine test. From my understanding this will test if streptococcus pneumoniae is in her urine, but I don't know at this point, why that is important! This by the way, has to be done on a non potty trained little girl and taken to San Antonio on ice within 4 hours after she goes. Okay Heavenly Father, a little more divine intervention might be needed here!! Timing this between the commute to school, work, doctors appointments and a non cooperative 2 year old should be interesting!!!

The only other thing she would like to do is to have her vaccinated with the newly FDA approved Prevnar 13. This was just approved February 24, 2010 and will cover 13 strains of bacteria versus the 7. Because Courtney had the other vaccine today she wants to wait for one month.

Okay, that was more medical talk than I know what to do with!! I feel really good about this plan and really good about this doctor! She wants a handle on this, wants to know why she continues to have these ear infections AND she has a plan!! I will keep you all posted!

Reaching Out

I haven't been the best blogger, and I don't know who all reads this, but I need help. This is our situation.

Courtney has chronic ear infections with drainage. We do countless rounds of oral antibiotics, and I think we have gone through at least a half dozen bottles of antibiotic drops. It will clear up and then within a few weeks to a month, at the most, it will begin draining again. It is always the right ear, we are on our second set of PE tubes and have done an adenoidectomy. We have ruled out a biofilm and an infected implant due to two cultures a year apart, but both came back with the pneumococcal bacteria.

This past week we went back to Dr.Not so Happy with Him Right Now and found out the recent culture showed pneumococcal bacteria. He prescribed oral antibiotics and drops and sent us back to our pediatrician - what? You are the ear doctor!! He said that he was not okay with the situation, but since the implant wasn't infected we needed to go to the pedi to explore blood work for an immune deficiency and possible discuss seeing an infectious disease doctor. So, I am at an ear "expert" and you are sending me to my pedi with a chronic ear infection!?

I was able to get in yesterday with our pedi, he was great, but obviously isn't familiar with everything with cochlear implants, etc. We did the blood work which came back normal and he said there isn't anything more he can do. What? What the heck am I supposed to do now!? I called our pedi ENT office for a 2nd opinion or something, but can't get in until April 26th!

Has anyone experienced chronic ear infections like this? There normally isn't fever, but always drainage with or without odor and turns tan or yellow or greenish. Should we try to get into an infectious disease doctor? Is it okay to just keep doing oral antibiotics and drops?

Any advice would be great!

We survived!

W did survive, but it was a challenge!! When we arrived this morning Dr. Syms informed me with Courtney's history of ear infections that we should go ahead and remove her adenoids! A little longer of a procedure and a whole lot more anesthesia and all that comes along with that, but we survived! We felt it best to do it while she was under rather than schedule another procedure.

Courtney is soundly, safely sleeping in bed! Glad it is over and that Bryan is home! Note to self, never schedule a 10 minute procedure of any kind unless both parents can attend! You never know what the doctor may want to do!!!

Happy 2nd Birthday Courtney!

Dear Courtney,

I can't believe today is your 2nd birthday already! You have brought us so much joy and on a journey we have learned to embrace. Your sweet spirit and laughter are infectious! I love seeing you interact with your brothers. Through all of the roughness you hold your own. You are a strong willed little girl which can be very difficult now, but later in life will be one of your greatest attributes. "Sassy Pants" is sometimes an understatement!

This last year has been an amazing ride, watching your world open up to sound. You still seem to take so much in visually. I love to watch you and look at your eyes as you take in the sights and sounds around you. You are social and love to blow kisses to everyone, including airplanes, buses and semi trucks! Our family wouldn't be complete without you and we thank our Heavenly Father for you every day!

I look forward to your growth and development this next year. It is hard to envision as we never thought you would dance when you heard music, turn to your name, or light up as we sang Happy Birthday to you. Thank you for choosing us, we love you!

Love you!
Mommy (Moaney)

One Year

A year ago today we began Courtney's journey into the hearing world. We have come a long way since this day last year!

This morning Logan ended up in my bed and Courtney was in the pack and play in my room as well. As soon as she spotted me she hopped up and yelled, "MOM!" I love it! Thank you Courtney!

Check 1

Her blood work came in normal for thyroid. On Monday we will have more details as to our next steps and which geneticist we will be seeing.

Results

I realized that I didn't post an update about Courtney's test results... They were normal, well at least a normal infection that should be able to be treated with antibiotic ear drops. So we had to finish out the week (Friday) doing ear drops and were told, "Just give us a call if there is anymore drainage." The next day our audiologist gave us a quick crash course on how to use an otoscope, sent us on our way and said to check for any drainage in her ear on Sunday.

Bryan and I were a bit skeptical on how this would work since you can't poke it in too far or it will hurt her, have to all but strap her down to look in her right ear, and have to hold the otoscope a certain way to move with her head when she moves so we don't jam the tip in her ear. So we couldn't check until today when she wasn't so fired up, and yep, you guessed it, there is still fluid in her ear! We were looking for "bone dry" and that wasn't the case. Anything white, green, yellow, etc. would not be good. Since I have only looked in an ear three times, not quite a professional, I wasn't sure what color it was, but it wasn't dry. Luckily, we go back to see our audiologist tomorrow for a mapping and she can give us the for sure thumbs up or down as to whether or not we call good ol' Dr. Syms!

The good thing is she hasn't run any fever. I just would like her right ear to be just as "bone dry" as her left!

A small delight!

After 16 months and 21 days, Courtney can walk! I knew eventually she would, but with her hearing impairment I was worried something else might be wrong. Even though I knew her brain was more focused on listening and processing sounds than developing her motor skills, I absolutely couldn't wait for her to walk! We are still holding out for teeth, but at least we know they are up there somewhere!

This is just the treat our family needed as we wait for the results on Monday to find out what is causing Courtney to have an ear infection since December 23rd! Dr. Syms took three cultures on Thursday and we are hoping it is nothing serious. We may have to consult with an infectious disease doctor depending on the results. So... we shall see!

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.

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!

Activation Clip

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.)

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!

Happy 1st Birthday Baby Girl!

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.

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!