Sunday, June 14, 2009

Claire Marie is 3 years old today! In a way, it seems like just yesterday that we were at the hospital having her and then when I think about how much has happened over the past 3 years, it seems like she has been with us for much longer!

Claire has developed cholosteotomas in both her ears. That is a fancy word for tumors that are benign yet dangerous if not treated. So, she will be having surgery on June 23rd. We hope that the Dr. will be able to remove both tumors in one surgery. If not, we will go through the process twice....let's hope not!  It is not common to have bilateral cochlear implants and then develop cholosteotomas so the surgery will be a bit tricky. But we have complete confidence in Claire's surgeon and we know he will do a fantastic job.

  Thursday, March 5, 2009

My how time flies!  Things have been going well for our little girl so I guess no news is good news.  Claire continues to make amazing progress with her language.  At her most recent evaluation, Claire's language scores fell withing "normal range" for a typically hearing 2 year old which is just unbelievable. 

We have had one "curve ball" thrown our way recently. We found out that Claire's eardrums are collapsing.  Ironically this has nothing to do with her hearing loss or her implants.  It is probably the result of the many ear infections she had as a baby.  So, we are probably looking at surgery this summer. They will do one ear at a time which means 2 surgeries.  Although Claire does not actually use her eardrums to hear (because of her implants), the collapsed eardrums could cause problems with infection so they need to be fixed.  We will update when we know more. 

Sunday, September 7th, 2008

Well, school has started for everyone! I am back to work full-time, Matt is back to work and Claire is now going to school full-time as well. We have all settled into our new schedules and things are going well. Claire is now doing so much talking that I can't keep track of all her new words. We are very happy with all the progress she has made and continues to make. We are looking forward to a beautiful fall in Nashville, a visit to Arkansas in November and a trip to Florida for Christmas. Until then, we will enjoy the everyday simplicity of life for a change...after everything Claire has been through these past 2 years, we welcome it with open arms!

Wednesday, April 15th, 2008

Well in case you have not already heard (and I cannot imagine that there are many who have not heard) the newborn hearing screening legislation that we worked so hard on for a year and a half has passed!!!  As of July 1, 2008, ALL BABIES BORN IN TENNESSEE  WILL BE SCREENED FOR HEARING LOSS PRIOR TO HOSPITAL DISCHARGE!!  We are just thrilled to know that we played a small part in getting this legislation passed.  It has been a long road and lots of hard work but well worth it.  The law will also officially be named "CLAIRE'S LAW" which is pretty cool!

Claire is still doing very well and it just seems like she hears everything! Birds singing, water running, Daddy coming home from work, it is really amazing and we are eternally grateful for this gift!

Now that Claire's vocabulary is beginning to develop, we are working on putting two words together and on her auditory memory.  We might put 4 or 5 things in front of her and ask her to pick up two of them.  Claire is making steady progress with both tasks!

Claire also participated in a public service announcement to help raise awareness for the deaf and hard of hearing as well as inform the public of the different communication options people have.  I was very proud of her and hope it will air on-line or maybe even on TV! I'll keep you posted:)

That is all for now.  Thanks for checking in.  We have posted new pictures so don't forget to check them out!

Tuesday, January 29th, 2008!

Hello and Happy New Year! Well, now that the holidays have passed, I can catch up Claire Bear's website. Ironically, I have had a few people email me saying they have visited our site which is very exciting for us.  Claire is doing just great! Her latest visit to the audiologist showed that she is hearing at 20-25dB in both ears across the board! This is just fantastic! Her right ear has only been "turned on for 6 months and her left ear has only been turned on for 2 1/2 months.  We are thrilled yet continue to work hard to close that gap that still exists between her chronological age and her "hearing age". In every other respect, Claire is your typical 19 month old little girl. She is happy and healthy and such a blessing. 

So, it appears that we have Claire's immediate needs under control for the moment....no rest for the weary though...I am working on Newborn Hearing Screening Legislation once again! Our Bill is now HB2753/SB3191 (you can look it up by going to www.legislature.state.tn.us, clicking on legislation, and typing in the bill number if you are interested in reading it).  If you would like to get involved, that would be so helpful.  The best thing you can do is write your local state house rep. and state senator and ask for their support of this Bill. For more details, click on the push for newborn hearing screening link on the upper left side of the page.

Thanks once again for tuning in.  Until next time:)

Friday, November 23, 2007

Happy Thanksgiving to all!  We have lots to be thankful for...wonderful family and friends, good health, and especially successful cochlear implant surgeries and activations for Miss Claire Marie.  Claire's second CI was successfully activated on Wednesday, November 20th.  We did not know quite what to expect but in true Claire fashion, she smiled and took it all in stride.  She turned to sound at the audiologist's office and tolerated quite a bit of sound in her "new ear". Our only problem is trying to keep two implants on an active 17 month-old's noggin:) We are back to see the audiologist again on Monday, November 26th.  Hopefully, all will continue to go well.

On a broader scale, we continue to work on raising awareness for the deaf and hard of hearing community. We are getting ready to participate in introducing new legislation mandating newborn hearing screenings in the state of Tennessee, we are working on a grassroots campaign to help raise awareness for all members of the deaf and hard of hearing community, and we are working on getting information to those participating in birthing classes to make sure they know about newborn hearing screening, the correct questions to ask their pediatrician etc.

If anyone out there is interested in getting involved or knows anyone who might be in a position to help with any of our "projects" we would love to hear from you.

Friday, November 9, 2007

I am happy to report that Claire's surgery (Tuesday, November6th) went very well.  Dr. Haynes (Claire's surgeon) was very satisfied with the result as was Dr. Bradham, the audiologist who tested the device in the O.R.  So, if they are happy then we are happy!  Claire is recovering at home, continues to get stronger with each passing day, and is acting more and more like herself.  We put her right implant back on over her head dressing the day after surgery.  We were surprised that it worked that way but somehow it did.  As far as her reaction to sound etc. she has not missed a beat with that right ear. 

We go back for her surgical follow up and "turn on" her left ear  November 21st...our next big hurdle. We are keeping our fingers crossed that all continues to go well.

We received a lot of emails and phone calls sending prayers and wishing luck.  We really appreciate all the support we have gotten throughout this process.  It means a great deal to us and we are very grateful.

Tuesday, October 15, 2007

Claire and I went to the audiologist this morning and we got the best information ever as far as what she is hearing, at what volume, at what frequency, and the number of frequencies.  In a nutshell, she is hearing everything they tested within the "normal" range.  Her audiogram can be seen below.  This is a great visual explanation.  The green highlighted CI's (cochlear implant) show at what volume she was hearing, as well as what frequency she was tested.  For example, the first CI means that when the audiologist pumped sound into the room (specifically designed for this type of testing) at 250 Hz (a low frequency), Claire heard it at 20dB. Looking at the very last CI, when the audiologist pumped sound into the room at 5000Hz (a high frequency), Claire heard it at about 25dB.  As you can see, all the frequencies in-between were also heard between 20-25dB as well.  The shaded area on the audiogram is called the speech banana.  This is the volume at which normal speech is heard.  If you look to the green star on the far right side of the page, you can see that Claire responded to speech at 20dB.  That is at the top of the speech banana which is just great! So, hopefully this helps everyone understand what I mean by all these numbers and "normal" etc.  It sure has helped me!

I was also invited to speak at the Investing In Family Support Conference last week.  This is a national conference so I got to meet people from all over the country who are dealing with hearing loss and got to learn about what they are doing in their respective states to further education and awareness about this issue. It was a terrific conference! I learned a lot and met a lot of very impressive people who have really contributed to the deaf and hard of hearing community.  I am still trying to figure out where I will be able to contribute (other than just doing what is best for Claire).  This conference gave me some great ideas on just how to do that!

Our next big hurdle is Claire's second surgery on November 6th.  Please keep our little Claire in your prayers.  I will be sure to update as soon as I can following her surgery. Bye for now:)

Sunday, September 30, 2007

My how time flies!  Claire is still doing very well.  She is imitating more and more behaviors AND sounds which shows us more and more comprehension...very exciting. We also know that her 2nd implant will be turned on November 21st so she will be hearing out of BOTH ears by Thanksgiving:)

I attended the Newborn Hearing Task Force meeting this week.  This is a group of people who are working very hard toward ensuring that all newborn babies in the state of TN received a hearing screen before they leave the hospital.  As most of you may know, newborn hearing screening is not mandatory in the state of TN. We will be reintroducing the NHS Bill into the state legislature this year and hopefully it will pass this time.  If there is anyone interested in getting involved in this cause, please let me know.  The more active parties involved, the better.

We will also be attending a family support conference next week.  This will be our first and I have been asked to speak about our experience thus far so I'll let you know how it goes.

I guess that is the report for now.  More to come soon!

Wednesday, September 12, 2007

Claire and I went to see Cathi the audiologist today and we got a great report.  Claire is still responding to speech sounds at 20db which is wonderful. Claire is also responding to high, mid, and low frequency sounds at 20-25db which is awesome and is an improvement from her last visit.  Cathi did not even change Claire's MAP because there is no need to...Claire is right where she should be from an audiologic standpoint.  This is all WONDERFUL and I couldn't wait to get home and get it on her blog:)

More news.....Claire's surgery date has been changed from November 13th to November 6th!  We are keeping our fingers crossed that the next surgery experience will be as promising as the first was.

Thursday, September 6, 2007

Well, Claire has been progressing with each passing day.  Nothing drastic...just slow, steady progress and we are sure happy about it:) She is beginning to imitate more action which shows us that receptively, she can hear and understand what we are saying. Expressively, Claire is making sounds and does sometimes imitate the duration of a sound she hears even though the sound she is making is nothing like the one she heard. That is ok.  Ginger, Claire's SLP tells us that duration of sound is the first thing to come. Next comes intensity and then pitch. 

We also received some very exciting information today. Claire will be receiving her second cochlear implant on Tuesday, November 13th!  Hard to believe we will be doing it all over again but we know that in the long run, it is what is best for Claire so we will persevere!

I guess that does it for now.  Thanks for reading about our little Claire Bear.  We will add some new pictures soon!

Saturday, August 18, 2007

More good news!  Claire and I were off to the audiologist again yesterday and this time, she responded to speech at 20db!  That surpasses all the expectations our audiologist said she had for Claire only one month after being turned on.  Claire hears just about everything now...the phone ringing, the dogs barking, Daddy coming home from work, even whistling...it is simply amazing! We are already starting to talk about implanting her left ear!  We are hoping to have the surgery before the end of the year.  It seems really quick but all the experts agree that based on Claire's success with the first one, the earlier we get the second one in place, the better for her.  Of course, we are all about dooing what is best for Claire Marie. We are very happy and feel so lucky to have so many gifted people working with Claire.  We could not ask for more!

We continue to make progress with Claire's speech therapist as well.  Claire really seems to be understanding so much more of what we say with each passing day. She is even attempting to imitate some of the things we say.  That is very exciting!

Claire started her new school this week as well.  She is acclimating quite well and seems to be having a great time...not too tough for Claire...she always seems to be having a great time:)

Shoe update:  I did go back to the shoe store and bought 2 more pair. They were having the same buy one get one 1/2 price sale so I couldn't resist.  Claire has broken in 4 of the 6 pair purchased and she really enjoys wearing all of them...I think she gets that from her mother:)

Monday, August 6, 2007

I have more positive news to report! We went to the audiologist on Friday and Claire responded to speech at 25db! That is great news although I know it may not make any sense to anyone. 

Without going into too much detail, sound is measured in decibels (db) on a chart called an audiogram.  The range is 0-110 db.  The lower the number, the softer the sound. Most normal hearing people can detect sounds that are as low as 5 db.  A profoundly deaf person like Claire cannot hear anything less than 90 db (by definition). In fact, after testing, we were told that Claire does not hear anything under 110 db...that is loud!  Typically, with her hearing aids, Claire would respond at 60-70 db on her best day. Now, after only 3 weeks with her cochlear implant, she is responding at 25 db and this should improve with time!  So, now that I have tried to explain this and now that you (hopefully) understand it, you can get excited for Claire too!! There is still a lot of work ahead as we work to close the 13 month gap between Claire's "hearing" (or lack of) before the CI and Claire's hearing after the CI but now that she has sound coming in, we can really start to help her learn to listen.

Shoe update: Claire has broken in 2 of the 4 pair of shoes we bought her and seems to enjoy wearing them.  We walk out to the mailbox each day and she is getting around the house with greater ease as well.

Claire starts her new school (Susan Gray School) a week from today! We are all excited about this new adventure!

Tuesday, July 31, 2007

I apologize for the delay in an update.  Things have been moving along very well for Claire. She continues to respond to more and more sounds consistently which is super exciting for us. We will focus primarily on her receptive language for the first couple of months that her implant is up and running and will slowly begin to add expressive language development when her speech language therapist thinks it is appropriate.  She is beginning to imitate gestures more and more which shows us that she is understanding more.  Simple signs like milk, ball, and baby as well as rubbing her tummy when she is eating and "saying mmmmm". She also rocks back and forth to music which we just love to see! 

  Her Daddy created a "chart" (see below 7/19/07 entry) denoting the frequency and intensity of her program/volume increases.  The goal is to have her at full program/volume (p4 v9) by Wednesday, August 1st. So far, we are on track!  We go back to the audiologist on Friday so I will have new updates for you then. 

On another note, Claire is officially walking on her own so we brought her to the shoe store today for her first official foot measurement and pair of shoes!  Her foot measures a whopping size 6 and of course, we left the store with not one but FOUR pair of shoes....not surprising to those of you who know her mother well:) I must also mention in my defense that there was a buy one pair get the second pair for 1/2 price sale.....couldn't pass it up.  We will be sure to add a few photos to the gallery of Claire in her new "kicks".

Sunday, July 22, 2007

We thought you might like to see a picture of Claire wearing her cochlear implant. We've labeled the main components to help you understand the different parts. Here's how it works in a nutshell--sound comes into the microphone (the part she's wearing around her ear, that looks like a regular hearing aid). This sound is then transmitted through the coil to the external magnet, which is then sent to an internal magnet which is surgically imbedded in her skull. Once these sound impulses reach the internal magnet, they are sent to the cochlear implant, which sends the signals to the brain. Got that? The whole thing is really unbelievable. And yes, if the external magnet falls off her head for whatever reason--which it does quite frequently--that means the chain is broken and none of the signals are making it to Claire's brain, which means she's not hearing anything. In that case, we simply put the magnet back on her head, which reestablishes the connection.

For a better and perhaps a bit more intelligible explanation, please visit the Cochlear website--www.cochlear.com. (Cochlear is the company that makes Claire's implant, the Nucleus Freedom.) The actual site is: http://www.cochlearamericas.com/Products/11.asp

Thursday, July 19, 2007

As you probably know if you're a return reader of this website, each day we turn up, just a little bit more, the "volume" of Claire's cochlear implant, with the goal of having her at the highest level (P4/9) by the time of our next appointment on August 3rd. (Please read the July 14th entry for an explanation on cochlear implant hearing levels,) So we thought it might be helpful for you to see the overall progress of Claire's "hearing"--that is, just how much we increase it each day. Below is a chart with the level and volume for each day leading up to August 3rd. Every day she's hearing just a little bit more!

Tuesday, July 17, 2007

Claire's implant has now been on for about 5 days.  We have already turned her program up to 2 and her volume up to 7 (read the July 14th entry if you don't know what that means) and she seems to be tolerating it well...still her happy, smiley self.  She also seems to be more "vocal" and is responding to certain sounds that fall from high to low frequencies...all good stuff!  Not much else to report for now:)

Saturday, July 14th, 2007

It has been a busy couple of days and a successful couple of days as well.  Claire had her implant "turned on" Thursday, July 12th, 2007 at 1:30pm.  As is often the case with children at their initial stimulation, she began to cry quite inconsolably. This was a positive sign to her audiologist because it meant that she was receiving sound. By the time we left that afternoon (and after a short snooze) Claire was calm and back to her happy self.  We then returned at 8:00am the following day for more work on her "maps" or programs. She did get a little upset but nothing like the first day and she allowed the audiologist to turn up the volume on her frequencies quite a bit.  We left with 4 programs or "maps" installed onto her processor....P1-P4 each with the volume level ranging from 1-9.  Each of the programs themselves also get increasingly louder beginning with P1.  So, for the next two weeks, our goal is to gradually increase Claire's programs and volumes on each program until we reach the maximum volume at P4. Hope that makes sense.  It is a lot to learn for Mom and Dad but nothing compared to all that Claire has to learn so we can certainly take it!  Now, as of Thursday, Claire is 13 months chronological age and 1 DAY hearing age.  Therefore, as a general goal, we will be working to close that gap between her chronological age and her hearing age.  Our audiological expectations of her right now should be that of a newborn which means we will be focusing mainly on receptive language for now. We will just talk, talk, talk to her all the time and about everything!! Once again, we are very pleased with this milestone in Claire's journey and are so very thankful for all the talented and dedicated people on her "team" as well as all the supportive people around the country. It means a lot to Matt and I that there are people "out there" thinking of and praying for Claire!

Tuesday, July 10th, 2007

Claire had her post-op. visit with Dr. Haynes (her surgeon) today.  Everything seems to be healing beautifully which is great news!  We are anxiously awaiting our appointment on Thursday the 12th.  We will be "turning on" Claire's implant for the first time!  I will be sure to update afterward....so far....so good.

Tuesday, June 19th, 2007

Claire had her cochlear implant surgery today!  We left the house at 10:00am and returned at 7:00pm so it was a long day but everything went very well.  So, Claire now has a 24 channel electrode array inserted in place of her natural cochlea and a small, quarter-sized, internal transmitter just above her right ear .  This is step one. The internal part of the implant is in place, she is recovering nicely, and getting back to her smiley, happy self with each passing day. Step two will take place on July 12th.  At this point, the external part of the cochlear implant will be added and her internal transmitter will be "turned on".  This will be an exciting day for all of us!  This will be considered Claire's hearing day one.  So, she will be 13 months old chronologically and 1 day old hearing age.  The goal will then be to close the gap between her hearing age and her chronological age.  Our hope is that we will be able to do this by the time Claire is 4 or 5 years old.  This will require lots of therapy, lots of audiology appointments, and lots of work on all our parts but we are very optimistic!

Thursday, June 14, 2007

Well, so much for consistency.  It has been awhile and lots has changed! Most importantly, Claire is ONE YEAR OLD today! Lots of people sent cards, emails, voice mails, etc. to wish her a Happy 1st Birthday.  Claire is really moving around.  She has her own version of crawling, has begun pulling herself up, and is "cruising" the furniture.  It won't be long before she is running all over the place.

Claire has also had tubes placed in her ears as a result of consistent ear infections.  They seem to have helped with the infections and with the amount of sound she is receiving through her hearing aids.  Although Claire does not hear well with her hearing aids, the sound that she does pick up is extremely beneficial in developing her auditory pathways as well as in preparing her for the day when she does hear!  We are only 5 days from her surgery!

Monday, April 16, 2007

Don't know how consistently I'll keep up the blogging, but I might as well strike while the iron is hot.

Sunday, April 15, 2007

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