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!