ECCO Program

I haven't done a hearing update in a while, which is good. Means there is nothing to report or talk about. We are participating in a program called ECCO (I don't know what it stands for, how bad is that). A nice lady (Petra) comes to our house once a week and works with Georgia on improving her listening and communication skills. It has been great so far and has taught both Matt and me so much. Here are just a couple of pictures of G and Petra playing games and working together. They did some sort of scavenger hunt where there was a toy at the end for G to find.

Georgia's School Meets her Aids

As I have mentioned before, TPS has some great perks for those kids who are Deaf or HOH. They have a staff audiologists who travels to the kids to service the aids including taking impressions for new ear molds. They also have a liaison, Shannon, who helps with any other needs. Shannon recently went to G's class and talked to the kids about hearing aids, how they work and (most importantly) what to do if you find one laying around.
She let some of the kids listen through G's aides so they could see how much louder it is.

It is time for new molds so the audiologist came along and got impressions of G's ears.

G did great.

3-month Hearing Check

Just to update, G had a hearing test last week and there has been no significant change in the last 3-months so that is really good news. Also, Mera passed her newborn hearing screening.

ENT Appointment

We had our appt. with Dr. Hamilton, the most recommended ENT in town for what we are doing. We waited 2 months for this appt. and can you believe I was worried about having the baby and missing the appt. on June 30th. Ha Ha. The main goal was to see about having a CT Scan done of G's ears to determine if there is a cause for her hearing loss. We learned two basic things:
#1 The CT Scan is mostly used to diagnose Enlarged Vestibular Aqueduct Syndrome.
If she has this, it would be important for us to know and mean her loss is progressive.
#2 Only about 5% of kids with a hearing loss scanned have this.
So our plan right now is to have her hearing retested this month and if there is no change again in 3 months. At that point we can decide if we want to spend the money and more importantly, have her sedated, to do the CT Scan. The Dr. said you don't normally have to sedate for a CT Scan but then he tried to examine her and saw what he was dealing with. She is not a good patient, needless to say.

I was happy with the appt. and feel confident we are on the right path for her. Now if I could just give birth...

Music

Georgia is always willing to take her ears out when I suggest it. Just now we were listening to Hey Soul Sister by Train getting ready to take a shower and I told her to take her ears out while I was thinking about it. She said "No, I want to listen to the music." Such a wonderful sign to me. Now I just have to remember to take them out when the song is over. She is my dancing queen.

P.S. I am still pregnant.

Genetic Testing

We were led to a really good resource for Genetic testing by the folks in OKC so we were able to afford to get it done without breaking the bank. The test is called SoundGene and they basically send you a packet that allows your own Dr. to do the blood draw and then you overnight it to their lab. Within 72 hours they send the results to your Dr.

So we had G's finger pricked and had her little finger milked enough to fill up 4 circles on a piece of litmus-like paper. She screamed through this whole process and Darby was sitting behind her. Darby heard the screaming and said, "I want to see." So she moved in for a better view of the trauma. Off the subject, we left my midwife's appt. the other day and Darby said, "I wanted Ruth to take your blood." I hated disappointing her like that.

Anyway, we got the results back and none of the markers came up positive. This doesn't mean it is not a genetic cause, it just means of all the genetic causes they know how to test for, it does not match any of those. I am neither happy or sad about this. I am not one of those parents desperate to find a cause because that doesn't really change anything.

Yesterday we had Georgia's hearing tested with her aids in and she did great. She defiantly hears better with them in. We also had Darby's hearing tested and she passed no problem, which is no surprise to me. I wasn't really worried but at least now we don't have to wonder about her.

In other news, G wore her aids from 8:30 until 12:30 this morning without even complaining or mentioning them. She has had them in all afternoon as well so that part of it is going really well. I am pleased she is getting used to them and they are becoming part of her day.

It's Getting Better

Here is an e-mail I sent to my husband today:

I told G last night we would be wearing our aids today of most of the day, just taking breaks if we were in the car. So far she wore them from 8:30 until noon with only one 15 min. break. She took them out a couple of times at home this morning but I put them right back in and she accepted that. It is so funny because she will only take them out in my presence. She would never be sneaky about it which is one of the great things about G. When we got in the car after story time she heard and ambulance and decided to keep them in for the 5 min. drive to playgroup, but only if her window was rolled down. Two things she said this morning, one funny, one a little sad:

She told me she didn't want to go to school tomorrow and when I asked her why she said "Because none of my friends noticed my hearing aids." I will have to take her Oliver book tomorrow and see if the teacher will read it and show off her hearing aids.

She also was complaining during her car ride break that she didn't want to put them back in and said "I wish I had ears like you and Darby." Kind of broke my heart a little.

After nap we put them back in and she wore them for another couple hours and then took a car break. When we got home she put them in for maybe a half hour before we took them out so she could talk on the phone. I gave up after that. She had been a real trooper all day and I didn't want to push my luck. The little red spot she was getting is less red lately and I think she knows they help because at night when I give her the option to wear them while we read books she wants them in.

It is hard as a mom to do something you know your kid doesn't like. No mom wants to have to do that all day, especially when I am hoping for a positive association with the hearing aids. She is a precious little girl and I love her more and more every day if that is even possible.

Hearts for Hearing Trip

Here we are in the waiting room having Daddy read a book. Georgia loves to be read to lately and Matt has so much more patience with it than I do.

Here G is just being goofy and playing while waiting to get her aids in.

They had to measure the depth of her her in order to set the hearing aids right and G was resistant at first but once the audiologist got some bubbles out all went well.

More playing.

And here they are hot pink with purple swirls and sparkles ear molds and purple hearing aids. They look so cute in.

The hearing aids came with an otter who also wears hearing aids so while G got hers put in we put his in.

She thinks he is pretty cool.

this is the brief moment in which she left them in.

And here she is in the car wearing them and listening to her DVD player.

As I said before, it was a great experience. I have gotten over the angst of having her wear hearing aids and moved on to the challenge of actually getting her to wear them. I would say of her 10.5 waking hours today she wore them for 5 hours. We are slowly building and getting used to them. I can tell she hears better and speaks better with them in so it is just a matter of helping her realize it. We are going to try them for a short period at school tomorrow and see how that goes. She is a sweet sweet girl and is trying really hard to please me and be good even though I know it is hard at times.

Princess Ears

Our appt. with Hearts for Hearing was Friday morning at 10:30. Matt took the day off work and we arranged to have Darby go to school and my mom to care for her after that. I found myself in a horrible mood by the time Matt got home from work on Thursday. I was short with the kids and generally a little mean. Around 7 I told Matt I was going for a walk and left him with the girls. As soon as I stepped outside I realized my mood was caused by a deep feeling of dread.

Here we had this gorgeous, innocent, precious little girl on a path of "normalcy" only to discover she was no longer on that path. She was on a different path. The finality of actually getting the hearing aids was what made it seem so real all of the sudden. I walked over to my mom's house and had a good cry to get it out of my system. My mom, as always, was wonderful and sympathetic, and said the right things. I felt much better after that and returned home to finish off my duties as a mom for the night. (As a side note, I also realized I had broken out in hives from either the worry or the stress. They are gone today.)

We got up Friday morning and hit the road around 8:15. Georgia was really excited about he trip and about being alone with her mommy and daddy for a whole day. Honestly, sometimes all of us need a break from "The Destructor" (Darby). We got to HFH at about 10 and were obviously early. We chanced it and went in hoping maybe they were ready for us and they were not. Finally at 11 the speech pathologist took us back and spent about an hour testing G and getting an idea of where she is developmentally speech-wise. We were really please to find out both her expressive and receptive speech are at or above her age level. We were also told that if her hearing loss was progressive and she eventually went deaf, with cochlear implants, she could always be audio/verbal (meaning we wouldn't have to rely on sign language).

The audiologist finally came in and said that the aids they were fitting Georgia with with the first pair of a new generation (Oticon Safari 600) and that the software was giving them a problem. She suggested we take a lunch break and they would call us when they were ready for us. That was fine because I was starving (as usual) and G needed a break. We were right by Penn Square Mall so we headed over there for lunch and running around.

They called us at about 2:00 when we had just gotten in the car to find a park so we headed back to get our new hearing aids. Georgia was very excited, even though I don't think she fully understood what hearing aids meant. I should mention that I felt great the whole day. I never came close to a breakdown or even crying. The people at HFH were so nice and reassuring, by this time I was as excited as Georgia to get her new aids.

The fitting was pretty uneventful except for the fact that G wouldn't wear the hearing aids. This was no surprise to me, but the people there said most kids walk out with them on. Georgia was tired and ready to be home so we put the hearing aids in her case and headed back to Tulsa at about 3:30. Once we got G set up with a DVD and were on the turnpike she said she wanted to wear her new hearing aids. So Matt, who had never put her hearing aids on, climbed in the back seat and put them in her ears. She kept them in all the way home and half-way there even said "I like my new hearing aids. They make me hear so much better."

As soon as we got home she took them out and didn't put them back in until we read books before bedtime. I have to go take care of the kids now but I will try to post birthday pics and trip pics tonight and update how we did with our hearing aids this weekend.

Hearts for Hearing

We have our appointment at Hearts for Hearing in OKC one week from today. We will take the ear molds (pink and purple swirls with sparkles) the Health Dept. had made for us and be able to have her fitted for aids that day. She and her daddy went and picked up the molds this morning and she likes them so that is one step. She wanted to hold them in the car and that is great. The sooner she takes ownership the easier my life will be.

More Hearing Information

So far this blog has been nothing more than a vehicle to share pictures of my family with far away family and friends. I still want it to be that but now I feel like I have a story to tell that may some day help another mother or father find their way through the hoards of information out there on hearing loss.

Before I go into what happens next I just want to say this is really hard. I have a friend whose boy has high functioning autism. She always has a smile on her face and stays positive in my presence. Never before was I able to relate to her pain or agony over having a child that will be faced with a challenge for the rest of his life. I now know there are probably nights she cries herself to sleep and days where the tears sit right behind her eyes but hopefully stay there unless she is alone in the car. On the other hand, the face she puts on for me is the face that gets him and her through the day. What else is she supposed to do? Sit and cry about it. And I now know, as she has learned, sitting and crying doesn’t do anyone any good (although there are some days it is allowed and sure feels good).

In the same breath I know what is wrong Georgia is fixable. It is not cancer or meningitis or autism. It is as fixable as crooked teeth or bad eyesight. While these fixes are a little more mainstream, they probably feel bad at times to the kids dealing with them. So my goal is to stay positive but allow myself moments of weakness as any mom would. I am so blessed to have in-laws that, believe it or not, dispense hearing aids for a living. I am blessed to have the amazing support of my parents and siblings and all my in-laws and to have a job that allows me to take the time(and phone calls) to deal with this issue.

Now this is where I may lose some of you but journaling my encounters with the professionals helping me along the way is part of working out what I am doing in my head. I contacted a wonderful woman today in OKC who is with Hearts for Hearing and learned so much. As of yesterday we were looking at some major out of pocket expenses (including some aid from a grant funded program) because insurance does not cover anything to do with hearing loss or genetic testing. Today I found out if we go to OKC they will give us our first pair of hearing aids for free and significantly reduce what we thought we were going to have to pay for genetic testing. The genetic test looks at Conexin 26 which you can follow the link to read more about if you are interested. There are two reasons for the test. One is to further investigate if the hearing loss is progressive and the other is to let us know how closely we have to watch the new baby. If not for these two factors, I would not care what the cause of her hearing loss was.

The other exciting information out there is that Tulsa Public Schools has some wonderful services for the deaf and HOH (hard of hearing). They will provide you with free ear molds every six months (because young children grow so fast) which would otherwise cost $100 a pop. They have an audiologist on staff and we can have G’s hearing tested for free whenever we want, and they have an individual who keeps an eye on G’s progress to make sure she is getting the help she needs an doesn’t fall behind. When we first found out about this I told Matt I was now considering home schooling but after more thought and all the services TPS offers, I think public school is still right for us. They also provide a free FM system which is awesome and you can follow that link to find out more as well.

This is just the tip of the iceberg as far as people I have talked to and things I have learned in three short weeks but I am excited about the information I have and am ready to improve my baby girls quality of life as soon as I can.

Just the Facts

I have been thinking about this post for a few weeks now. I have not yet felt that the time is right for it and I am not sure I feel the time is right now. But I have some time and am feeling positive about things it seems like as good a time as any.

When Georgia was a little older than three I took her to TU to have her speech evaluated. At the time I understood her, and other family members understood her but strangers had a hard time. Part of the evaluation was a hearing test which she refused to cooperate with. The speech part went fine and the therapist said she was “normal” for her age and development. Within three months after that her speech cleared up and she was much more understandable.

Some time around Nov. or Dec. I noticed when we were in the car she had trouble hearing me talk to her but I assumed it was because she sat behind me and sometimes the radio was on and a car is a noisy place to begin with. Then I realized she would often times say “what” when I addressed her and my back was to her or I was in another room. Now lots of kids say “what” but hers was not the distracted, “you just interrupted my thought”, kind of what. It was the “I really didn’t hear what you said,” kind of what.

I talked to my mom about it and to my husband and they agreed she seemed to say “what” more now that she was really conversational and speaking to us in a more complex way. I had to have both girls hearing tested at the Health Dept. as infants because G would not be still enough to pass the hearing screening at the hospital and Darby was born at home. Both girls did pass the newborn hearing screening. I made an appt. at the Health Dept. to have G tested since I knew insurance wouldn’t really help and the health Dept. would be priced reasonably.

I totally expected them to tell me she had fluid or wax in her ears, send us to an ENT and get the whole thing cleared up. The hearing test was on a Wed. and during the test I was in the sound booth with her and she was so good about wearing the ear plugs and head band. She played the games but after about 30 minutes, I could tell she was done. I could also tell during the test, she was not hearing everything.

Once we got out of the booth the audiologist, Casey, set G up with some toys and I looked at Casey and said, “She didn’t hear everything.” I was told that was correct and that there was no blockage in the ear or damage to the middle ear which meant her hearing loss was sensorineural. In other words permanent and inoperable. The audiologist wanted me to bring her back the next week to re-test and make sure the results were accurate.

Matt and I both went with her the next Tuesday and had her re-tested. The results were very similar and in line with a “mild” hearing loss. With this type of loss she misses out on perhaps a faucet dripping or the birds singing and has a hard time if there is any background noise. Her speech has not been assessed in the last two weeks since we found out but I feel like she has done really well for having such a hearing loss. She speaks clearly and has the ability to converse using seven and eight word sentences.

The only treatment for this kind of hearing loss is amplification, or hearing aids. We have 3-months in which we can try out the aids free of charge and see if she will wear them and how much they help. She got to pick them out herself and they will have a purple behind the ear part and a pink and purple swirl with sparkles ear piece. We are hoping to start using them in a little over a week, after her birthday and party. Georgia has already started calling them her “princess ears” and asking when she will get them.

There is so much more involved with this in regards to emotions and how Matt and I are feeling and how we have made some of the decisions we have made and what decisions we have put off making, but that will be a different post. I just wanted to get this out there. I don’t know of any other children that wear hearing aids and have a minor hearing loss. I have grabbed as many books as I can, joined as many message boards as I can, and called as many local organizations as I can. If there is one thing I CAN do about her hearing loss, it’s be knowledgeable.