Sunday, September 20, 2009

August 21, 2009 - Picking Up EM's First Set of Hearing Aids

Wow a week goes by quickly. It is time to get Ella Marie's hearing aids. We met with Suzanne, Ella Marie's audiologist. She was very nice and she provided us with a lot of information about hearing aids in general. She gave us hearing aids and a packet of materials to take care of her aids. Here were a few pieces of information that Suzanne provided for us.

1. Ella Marie should be wearing her hearing aids during all waking hours. She said that she knows that they will squeal and we will not always be happy with them in, but we need to give Ella Marie every opportunity to wear them so she can possibly hear something.

2. At night the hearing aids do not go in their carry case. There is a special box to put them in. You must take the batteries out nightly before putting them in the box.

3. Once a month the hearing aid can be cleaned by placing the earmold in a cup of water with an alkaseltzer tablet. You can also use dish soap or a mild soap to clean it. You can use alcohol on the aid itself to clean it. We were also given a special thing to use to help clean out the earmold.

4. You should always carry an extra set of batteries around with you. One good idea is to place a sticker in your calender to show where and when you changed Ella Marie's battery out.

5. You should do a battery check and listen to your aids daily.

6. Do not leave the hearing aids sitting out. Dogs are very interested in them. The batteries are extremely toxic so we don't want the Ella Marie or Charlie to get them.

Tonight after getting back from a long travel day, we rode in the Killen Founders Day Parade. Her daddy is running for State Senate this year. The parade was a lot of fun. We ran out of candy before we ever finished the parade.

August 20 - 3 month pictures

Time to go to Moulton! Heather Mitchell will be taking Ella Marie's pictures today. Ella Marie looked absolutely gorgeous for her pictures. Of course the session did not start out as planned. Ella Marie bumped her head into my lips so lipstick was on her forehead. Then I am trying to rub it off which causes a red spot. Thank goodness for photo editing. Ella Marie did a great job in her pictures. She did not like her pictures in the basket. She wanted to be more propped up. She made it through most of the session awake. Then she fell asleep for the last part.

August 14, 2009 - ABR at Children's Hospital, Speech Evaluation and Ear Mold Impressions

Ella Marie - 3 1/2 months old
Well today we had a very long day. We started off at Children's Hospital. Ella Marie was scheduled for another ABR test. Children's likes to run their own tests. This time we did not have to sedate Ella Marie which was very nice because it was really rough on her the last time. The results confirmed the same thing. Ella Marie was considered in the severe to profound hearing loss category. Oh how we were wishing for different results, but we knew that our results would be the same. After her ABR test, we went to the Hear Center in Birmingham. Our doctor refers his patients there for speech therapy. We were scheduled for Ella Marie to have a speech evaluation. You may ask the same question as I will you evaluate her. Well she was mainly evaluated by asking me as the mother a lot of questions. This was great seeing as though she slept through most of it. Next we had her first set of earmolds made. Well Ella Marie did not like this one bit. First they check your ear, then they push a little string and cotton piece down in your ear. Then they fill your ear up with a lot of gooey stuff. None of this hurts, but she did not want anything in her ear (who could blame her). I think she let everyone know in the building that her lungs worked perfectly. We were told to come back in a week to pick up her hearing aids.

Sunday, September 13, 2009

Ella Marie’s First Visit to Memphis Oral School for the Deaf – Sound Beginnings Program

On August 13 (Ella Marie was 3 months and two weeks old), Ella Marie, my mother-in-law, and I went to attend our first parent program meeting at the Memphis Oral School for the Deaf. Again, another little blessing that God has given us… of the best oral schools is located in the same town that I have family in. Anytime that I need to spend the night out of town I have somewhere I can stay. This program “Sound Beginnings” is dedicated to helping our child get off to a great start in language development. Part of the time is spent educating the family on hearing loss information and part of the time is devoted to teaching us activities that we can do at home with Ella Marie. When I am explaining what I have learned to my family and friends I have told them that these activities are ones that we can do and most parents do with any child. The difference is that a hearing impaired child must have these activities. Also, it is good to know the background of why we are doing these activities with Ella Marie. Most parents do a lot of these activities because “it just comes naturally.” It is important for me to understand exactly what skills these activities are enhancing. Below is a list of activities that we learned at our first meeting.
1. Handouts were given to us about how the ear works. We discussed how Ella Marie’s hearing loss is considered severe to profound. It is also considered a sensorineural hearing loss which means that this loss is in the inner ear. A common question I have gotten from people is “Won’t Ella Marie grow out of this?” No she was born with a hearing loss. Hearing is formed in the first three months in the womb.
2. We received a wonderful resource guide called My Baby & Me: A Book about Teaching Your Child to Talk by Betsy Moog Brooks. This book includes information on listening and talking, how the ear works, major milestones for children, and ways to maximize language development.

3. We discussed ways to keep Ella Marie’s hearing aids on. Typically children do not like to wear their hearing aids. As a parent you have to get used to the feedback from the hearing aids which is hard at first. Anytime you pull your child to you to hug or cuddle, you will hear a loud squealing noise. It is so easy to want to just leave the hearing aids off for the time being, but if Ella Marie is able to hear anything with the aids in, we want her to have that opportunity (even though we say that she is deaf this does not mean that she cannot hear anything. Ex. She may hear a siren like a soft noise. The Hannah Anderson catalog sells “pilot caps” for children. These are known to help keep hearing aids on. We have used toupee tape to keep her aids on. This was also suggested to us by Nathalie at Memphis Oral School for the Deaf. We ordered it from . It really helps. Also it is important to know that hearing aid batteries are very toxic. It is very important that we keep them away from her and the dog. We also keep extra batteries in my purse or her diaper bag since they go out every 7-10 days. One idea that was suggested to us was to place a sticker in your calendar on the date that you replaced the battery so you can see how often you are changing the batteries. Also we use cream on her hearing aids called otofirm to help get a good seal in her ear. At night, you must take the batteries out of the aids and store the hearing aid part in a separate round box. One frustrating part about hearing aids is that infants ears grow so fast that we are constantly having to get her ear molds re-made. Each time we have an ear mold re-made it is $50. It seems like as soon as we get it back from the lab 2 weeks later she has already outgrown the mold.

4. Narrate everything you do – For any child with hearing loss the biggest mistake that you could make is to think that they can’t hear you so there is no reason to talk to them. Actually it is the exact opposite….you should talk more. There is a program called Talk Around The Clock and this is exactly what we are supposed to do with Ella Marie. All of her waking hours she is stimulated with someone talking to her. We narrate everything we hear, ex. When the doorbell rings we take her to the doorbell and tell her that it was a doorbell. We talk to her about the here and now. Everything we are doing she is learning about. Even a diaper change is now “therapy time”. One interesting statistic is that a hearing baby must hear a word 1000 times to know it. A hearing impaired baby needs to hear a word 3000 times before he or she knows it.

5. Activities where we focused on language development for this week: Diaper changing and getting up in the morning. Even when I am changing Ella Marie’s diaper it is a mini speech therapy session. We talk about every step of the diaper changing process. For ex. “Ella Marie, I am getting out a diaper from the drawer. We are going to take your dirty diaper off. Are you ready to put on a clean diaper? Etc” Ella Marie loves to vocalize during this time as well. This is wonderful for her. It is important to show that you are listening intently to what she has to say. When she vocalizes or talks back we are supposed to point to our ear and say “I heard you Ella Marie” and then continue with what we were going to say. During diaper changing time it is also important to imitate the same sounds she makes. She will know that you are engaging in her conversation.

When she wakes up in the morning, the first thing we do is put on her hearing aids. If we don’t put them on the first thing she will learn that it is not important and will try even harder to not keep them on. Again we talk about putting on her hearing aids and exactly what we are doing in the morning. For example, we discuss opening the blinds and changing from our pajamas into our clothes for the day.

Although these activities are super easy and every parent does these activities, you would be surprised how preoccupied we get when we are doing these activities. For example, I no longer can be talking on the phone while I am changing her diaper because I need to be talking to her. Ryan and I both are mindful of how we spend her awake time. We have been excited to see how vocal she is at this time.

Saturday, September 12, 2009

Our Referral to Memphis Oral School for the Deaf

On July 29th, after finding out that our child was deaf, Dr. Paul Shea from the Shea Clinic referred us to the Memphis Oral School for the Deaf. Wow! What an amazing place. You can read more information about it on their website . On the same day that we found out our child’s diagnosis, we toured the school. We definitely were emotionally drained and upset over what we found out, but we knew we wanted to move forward and start working on what we could do to help her and not dwell on the news that we received. Immediately, Ryan and I were impressed with their commitment to work with children with hearing loss. Every minute at this school is designed to promote oral language development and have the kids ready for kindergarten so they are completely mainstreamed into the regular education classroom. The director, Teresa Schwartz sat down with Ryan and me and discussed the different programs and services that they offer. One program that we were very interested in is called “Sound Beginnings”. Their website explains this program as an early intervention program designed for families with infants or children (birth - 3 years) who have been newly diagnosed as having a hearing loss. A trained parent advisor conducts weekly center-based sessions with families. Parents and family members learn through demonstrations, hands-on participation, and printed materials how they can promote better listening and speech communication skills in their children. This is accomplished within a context of routine daily activities and simple games which can be played in the home. This leads to a better quality of social interaction within the family, and provides the educational foundation which will continue as the child moves on to a more formal classroom environment.

After meeting with Nathalie Johnson about the program we decided to do extended sessions so we did not have to travel to Memphis weekly. Our blog will explain some of the things we have learned from our sessions at the Memphis Oral School for the Deaf.

Early Intervention Services - Setting Early Goals For Our Daughter and Working Daily On Reaching Them

Early Intervention...What is it and what can it do for my child?

Early Intervention was set up under the federal Individuals with Disabilities Education Act ( IDEA ). If your child receives special education services this is the same law that regulates their services. Our state's (Alabama) Early Intervention Services are listed on this website.

Infants and toddlers from birth through age 2 are eligible to receive appropriate services if they are delayed by 25 percent or more in their cognitive, physical, communicative, social, emotional or adaptive development, or if they have a diagnosis of a physical and/or medical condition that will likely result in developmental delay.

So because Ella Marie is deaf she definitely qualifies for these services. Although Ella Marie is very young, I have already learned some very valuable information.

1. It is up to you as the parent and the family to be an advocate for your child.
2. Call many different places to ask about information on what services you can receive through early intervention.
3. Check into what other states offer through their Early Intervention programs and services. Does it compare to what you are getting in your state.
4. Don't wait for someone else to guide you through the process. You must learn everything you can learn.
5. Involve family and friends in the process.

Our journey through early intervention services:
We are still learning daily about the ins and outs of Early Intervention so I can only post about what we have personally been through. After Ella Marie was a couple of months old one of my friends Katie asked me if I had contacted the state about services for Ella Marie. In her pediatrician's office, she saw a flyer about this. I had heard of Early Intervention but to be honest we had been through so much of a roller coaster and it seemed as though we were at the doctor all of the time that I had not had a chance to call about services for Ella Marie. Once things slowed down just a little bit and she was around 3 months old I contacted numerous places about what they had to offer for Ella Marie. Each place told me about their services but in my opinion the services were not as specialized as I would like to have for my daughter. Each place that I called I asked the same question..."Could I receive the services somewhere else if I want a certain type of therapy?" Each place continued to tell me NO. I was bothered by this because this is a federal and state program. I believe that the goal for early intervention is to provide excellent services for all children who qualify and need it. After talking to some other parents in our area who had children with hearing impairments I found out that they did receive early intervention services out of town. They told me to continue to ask for it. Although our small community is willing to help Ella Marie, I just felt like she needed more. I wanted Ella Marie to have auditory verbal therapy and there was no one in our area who provided this service. I wish there would have been so we would not have to travel as much as we do. At this point our early intervention services include:
1. Auditory Verbal Therapy Weekly - whatever our insurance does not pay, such as a co-pay Early Intervention will pick it up.
2. A special instructor once a month to come to our home and monitor Ella Marie's progress.
3. Gas mileage every other trip to Birmingham, AL for Auditory Verbal Therapy.

If I would not have kept pushing for more services, Ella Marie would have only received a service once a month through early intervention which I do not believe is enough.

Beginning Our Family Journey

Hi everyone and welcome to our blog. We are new parents to our first daughter Ella Marie. She was born in April, 2009. Our journey of raising a child that would need extra help started the day we were leaving the hospital. Ella Marie did not pass her newborn hearing screening test and we were told not to worry that it was probably just fluid. Of course as a new parent I was very worried. Everyone tried to tell me not to worry but those who know me knew that I would. I remember my husband Ryan holding Ella Marie in the hospital and making this statement...."She is such a special girl and she is going to accomplish special things." At that point it was almost as though I knew something was wrong. Of course my husband was just talking about Ella Marie and did not think that this statement would linger in my mind. I too know that Ella Marie is special and will accomplish great things and look forward to watching what God has in store for her. After leaving the hospital 48 hours after her birth, we went home and spent time as a family. We went to the pediatrician's office for her 1 week check up. She did not pass again at 1 week and we were told not to worry that they still saw fluid in her ears. At two weeks old she was diagnosed with double ear infections so the doctors continued to believe that she may not be passing because of fluid. At five weeks old we went to Children's Hospital in Birmingham, AL and they told us that as hard as it may be we needed to wait another six weeks to determine if it was fluid. At this same visit tests were ran and she failed those as well. Finally after multiple failed tests I asked for a referral to Shea Clinic in Memphis, TN. Again, Ella Marie failed her tests there. They set up another appointment about a week or two later and at one day before Ella Marie turned 3 months old a sedated ABR (Auditory Brain Response Test) told us that she was deaf. She did not respond in either ear at 90 decibels. Wow! We were shocked. We thought she may have some hearing loss, but severe to profound hearing loss was not what we were thinking. So of course has been an emotional roller coaster but we also look forward to learning along with Ella Marie and providing her with the best chance for success. After finding out that Ella Marie was deaf, we learned that most likely she would be a candidate for bilateral cochlear implants. Before implant surgery can take place, you must go through a trial period of using hearing aids. She received her hearing aids at 3 1/2 months old. Right before Ella Marie turned four months old Children's Hospital ran an MRI brain scan to see if her auditory nerves were present. Without nerves present Ella Marie would not be a cochlear implant candidate. Praise God everything looked normal in the MRI. Most likely Ella Marie will either receive one implant at 10 or 11 months old and her other one three months later or she will receive both of them at around 1 year old. At 3 1/2 months old she received a speech evaluation. She is currently receiving auditory verbal speech therapy weekly at this point. Of course for a four month old it is more of activities we can do at home with her which is still great.

My husband and I definitely know that God has his hand in our journey with Ella Marie. We know that "our plan" is not always the same as his. Looking back, we can see how God has prepared us for this point. For instance, my degree is in elementary education. I have had the opportunity to work with a child with a cochlear implant. I love to teach children how to read. Since Ella Marie will most likely have difficulty in her oral language development and reading and writing at first, I have the patience to work with her and try many strategies with her. My husband is the most loving and patient person I know. Ella Marie already has him wrapped around her little finger. He is such a hands-on daddy. We are fortunate that Ella Marie will have both parents, family, therapists, and friends committed to her pathway of learning.

We want to devote this blog to our journey with Ella Marie. We want to have a way to share with family and friends what we are learning so they can work on the same skills with her. We also hope that in some way our family can impact other families going through this same situation.