1 Year IFSP Update

 UPDATE: I felt the need to come back and update this post as we have learned that Audrena's Usher Syndrome diagnosis was a mistake. Here is the post where we learned she does not have Usher Syndrome.

Monday was our annual IFSP review meeting. The team wrote new outcomes, and I mostly watched. I was a little under the weather with a bad case of laryngitis, and Randy wasn't able to get away from work. Plus, I have said before that the goals are not my strong point. Thankfully, we have some very experienced professionals! Some of the things we will be working on with Audrena in the next year are ling-6 discrimination and using 3 or more words to express her wants and needs. Those things seem pretty simple on the surface, but there are plenty of things to work on behind the scenes that contribute to Audrena's overall success.

We also discussed Usher Syndrome a bit. Audrena has Type 2C, but I think she must be an unusual case. For those who might not be regular readers, Audrena is missing two out of the three semicircular canals in her vestibular system. They just didn't form. So she has poor balance, much like people with Usher Syndrome Type 1. Our Audiologist explained that balance is made up of three components: the vestibular system, vision, and proprioception. Basically, her proprioceptive sense will be all that is left when her vision starts to narrow. Things like gymnastics are actually very good for her because it will help her learn to compensate. Audrena's physical therapist already does a phenomenal job working on balance-related activities with her. He sets up obstacle courses with stairs, uneven surfaces, balance foam, etc. The new physical therapy goals included things like working on walking stairs without a handrail and jumping.

One of Audrena's SLPs asked how Usher Syndrome will affect literacy for Audrena. My answer was that hopefully she shouldn't have to worry about that in the immediate future. The Usher expert that we met with a few weeks ago said that most patients still retain enough central vision to read even at 50 years old. It was a valid topic of discussion, though!

We also discussed the upcoming CI surgery and whether we should expect the new "ear" to fully catch up with the first. Hopefully it will happen, but there are certain milestones (18 months, 24 months, 3 years), and we've already sort of missed two of them with the second CI. With surgery approaching in less than two weeks, we are just praying for a successful implantation and will worry about catching up once that second implant is activated.

Also, we did check out the preschool classroom that Audrena will be in next year. Our Audiologist and SD School for the Deaf Outreach Consultant looked at things like class size, carpeting, wall coverings, curtains, and the presence of a soundfield system. I will fully admit that the idea of transitioning out of Birth to 3 Connections and into the school district scares me. It's unfamiliar territory, and I don't do well with that. So I guess it's a good thing that I have a year to educate myself! And thankfully Audrena has a fantastic team working hard to ensure that she has the best possible learning environment! We are incredibly grateful for every single person on Audrena's team.

A New Team Member

Last Monday also marked the start of our new Speech-Language Pathologist. She has good experience, and we really like her! Audrena will see her twice weekly, at least until she turns three and transitions to the school district. We feel like she is a great addition to Audrena's team!

We have an IFSP review meeting coming up in a few weeks. I'll be interested to see what kinds of goals Audrena will have in the next 6 months. She had asked me if there were any specific goals that we think Audrena should have. I will be honest and say that it's not our strong point in developing her goals. So we'll work with the professionals and see what we come up with. Audrena really has a great team, and we are comfortable and confident with their knowledge.

A Little Reflection

I have spent some time today reflecting on the past 7 months. Maybe it's because today was our IFSP review meeting. Maybe it's because I heard about another family starting this journey. Maybe it's because my mind has been on another family whose baby boy will have bilateral cochlear implant surgery next week. No matter what the reason, I realize we have a lot to be thankful for.

We have been on a wild ride this year. March 21st brought the first diagnosis of profound hearing loss. In April, we received a second opinion diagnosis that Audrena is profoundly deaf. In May, we underwent cochlear implant evaluations, and Audrena became a candidate for surgery. In June, we waited for insurance approval. In July, Audrena received her right side cochlear implant. In August, Audrena's life was drastically changed as she received the gift of sound when her implant was activated. She also underwent what should have been her second implant surgery, but the removal of a choleasteatoma delayed those plans. During the past 2 months, we have watched Audrena blossom in ways she never could have without the cochlear implants. And the fun has just begun! I am thankful for modern technology, a top notch surgeon, and talented Audiologists.

When we started this blog, we vowed that we would be honest and real. This is as real as it gets. These past months were the hardest times of my life, and they came just after I lost my mom, my rock. I doubted doctors. I hated my genes and myself, convinced that I was to blame for Audrena's disabilities (and it may still be genetics, but I will revisit that when the time comes). We cried. We prayed. We begged God to make things different for Audrena. We wanted a miracle. Then I doubted God. And then we went to church. It was ultimately through church that we were introduced to another family traveling the same path. Their little boy is the one who will have surgery next week. I am praying for strength for them next week. And today I am thankful for God, who does have plan for us, even if it's not the plan we had in mind. I am also convinced that my mom has been Audrena's guardian angel throughout this journey, and for that I am also thankful.

We recently heard about yet another family who may be traveling on a hearing journey of their own. To them, I would say that it will be hard, but it will be ok. You will get through it, but don't be afraid to ask for help from family and friends. They may not always understand, but they will be there for you. And seek out a mentor family because they will understand, and they will be able to show you proof that things will be ok. That brings me to my next reflection. I am firmly convinced that we could not have made it to where we are today without the support of such wonderful family and friends. Some of those friends have come through Facebook, or blogs, or e-mail, and they have been wonderful mentors to us. They have shared their stories, and they gave us hope when we needed it most. We have seen their children succeed with their implants. Audrena would have been just fine with sign language and no implants, but we wanted her to have the chance to hear us say, "I love you." We wanted certain things for her, and we needed to see that it was possible because at the time we couldn't see far enough into the future to today, when she can hear us say, "I love you," and just about everything else we say to her. I could not have made it to the good place I am in today if it were not for these people, whom we are happy to call our friends. So today I am thankful for Lori, Susan, Karissa, Deb, Anne, Keith, their families, and anyone I have inadvertently omitted. We hope to someday have the opportunity to provide that kind of support to another family because it's a rocky path to travel, and it helps to have someone there to remind you that there will be a pot of gold at the end. It will all be worthwhile, and everything will be ok.

This morning, we met with our team to review Audrena's IFSP. At our first IFSP meeting, we had no idea what to expect, so we were just kind of along for the ride. This morning, we were still along for the ride, but we felt experienced enough to give some input as needed. It was very reassuring and exciting to look around the room and see the wealth of knowledge, to see so many talented professionals who genuinely want to help Audrena succeed. A few months ago, to say that we felt overwhelmed by the number of therapy sessions, and by the number of people involved, would be an understatement. Now that we are in the thick of it, we realize that it's hard work, but we're seeing rewards. We're seeing wonderful progress. We have a team of people who are working together better than we had imagined. And we have confidence. I looked around that room this morning and felt like the pieces have all just fallen into place. Audrena will achieve the successes we had hoped for because she has the right team helping her along the way. I am thankful for every single person in that room today.

When I was a little girl, I always said I wanted three children someday. I never imagined that any of those three children would be anything other than "normal," happy, active individuals. God has a different definition of "normal." He gave us a challenge. But he also gave us a blessing, many of them in fact. Seven months ago, I didn't want a deaf child. I wanted a "normal" child. I didn't want cochlear implants. I wanted Audrena to have normal hearing. Today, we have a new "normal." We have three normal, happy, active children. I have everything I have ever wanted, and more. Today, I am thankful for a loving, wonderful husband, Randy, and our three beautiful, perfect children, Reyana, Kelton, and Audrena.

Because I am the "writer" in our family, I do most of the blogging. Randy often tells me that I write a lot about what I am feeling, and not so much about him. Well, that's because I am blogging from my point of view. I do try to include him the "we" phrases because he does feel the things I am feeling much of the time. I think I can safely say that in this post, he feels what I feel. He thinks what I think. And he is thankful for what I am thankful for. I love him, and I love that we are a team.

Switching therapy up a bit.

Awhile ago, I mentioned that we were going to be changing Speech-Language Pathologists through Birth to 3. It's difficult in a rural area to find experience with cochlear implants, but the SD School for the Deaf outreach team was able to suggest someone who would travel twice a week to see Audrena. Our previous SLP is probably very good, but she just didn't have the experience for us to draw from. It was apparent at the first session that the new one does, and she came highly recommended for her previous work with cochlear implant children. Audrena warmed right up to her, and we are seeing good things in the sessions. Plus, we are getting new ideas for "games" to play at home that will help Audrena learn to listen and develop her speech and language.

Our SD School for the Deaf consultant came down to see us last week as well. Audrena was a bit of a show-off! We played with a tiger toy for a bit, and suddenly Audrena exclaimed, "Rawr!" That was another first for her. She also walked and said "aahhh" immediately when I got out the airplane. Probably the funniest part was when K. was talking to her, and Audrena just rolled her eyes. We do have a sassy girl! K. was able to give us some information packets as well. We're always excited for new ideas!

Audrena met her physical therapy goals last week. We've also asked our SLP and our SDSD consultant to review the speech goals. We think it's time for an IFSP meeting to revise some things!

IFSP Meeting

We had our IFSP meeting yesterday.

Audrena showed off a little for her team. She walked between me and Daddy, holding our fingers, many times. The physical therapist was happy to see that! We decided that Audrena should have physical therapy once a week for 30 minutes. Her 6 month goal is to play while standing and to walk 10 steps independently. I know the point of the goal is to be realistic, but it seemed a tad silly to me. I feel like she'll reach them much sooner than 6 months. But I do know that her balance will cause challenges. In the meantime, we can adjust the schedule as needed, so if we feel like she needs more sessions we can work that in. I had not met our physical therapist at the initial evaluation, so I didn't know what to expect. I'm happy to report that I think he'll be good to work with.

The early childhood education teacher recommended evaluating Audrena once a month using the HELP method and set some goals for her as well. We feel confident with those things as well.

The speech therapist from the hospital was able to be there as well. We felt like speech therapy once a week until she has her first implant activated was a good approach to take. Then from there we can increase to twice a week. I'm thinking more like 3 times a week would be good, but we'll cross that bridge after we speak with the professionals at Boys Town next week. Our team was open to us consulting with Boys Town and switching things up as necessary. We were glad to hear that, although we don't have a certified Auditory Verbal therapist in our area, our speech therapist is educated in it. That was one thing I was not sure about since I admittedly don't know a whole lot about speech therapists' educational training.

We did tell the team that, although it may be a bit out of the norm, we want AV therapy and possibly down the road when Audrena's language is caught up to her peers we would work in sign language. I'm not sure that really fits any therapy model we've seen yet. I think that usually a family would pick just one method, which is essentially what we're doing with AV therapy, but I'm not sure that other families work in sign language at a completely different point in time. The fact is, we don't know if we will even need sign language. With bilateral implants, the chances of both implants failing at the same time are probably pretty slim, and there are waterproof implants now, so she can wear them while swimming. We do know absolutely, however, that our main focus over the next few years will be developing Audrena's ability to speak normally and to really learn to listen with her implants.

Yesterday was also the first time we met our SD School for the Deaf outreach person. I had talked to her on the phone a few weeks ago, and I had a good impression then. She stayed after the meeting for quite awhile, just talking with us about the implants and different things. She doesn't get many clients who use Boys Town. A lot of them go to the Mayo Clinic (which was one of our options, too) or just use one of the two surgeons in Sioux Falls. We shared our experiences with her, and we can truly say that we do not have one bad thing to say about Boys Town up to this point. Every single person there has been nothing short of amazing. When she finally did leave our house, we had a great feeling about her. We think she will be really good to work with!

So overall, we feel like we're on the right track. While we're at Boys Town, we hope to be able to go over things with them a bit to determine if there is anything we need to change. Next week is truly the beginning of an intensive journey for us. We began this journey several months ago, but it's about to get more crazy with many, many therapy appointments, pre-op appointments, the surgeries themselves, activations, mapping appointments, etc. The next 3-4 years will be hard, but this is one time shot. We cannot afford to screw up. These coming years will be a sacrifice in some ways for us, but they will affect Audrena's entire life. Yes, this is the beginning of building the foundation for her whole life. We are dedicated to giving her the best foundation that we possibly can.

The Beginning of Audrena's Hearing Journey

Audrena is our third child. She was born at 39 weeks via a repeat c-section. When she was born, the OB performed the surgery, and our family doctor, Dr. C., was present as the pediatrician. Both doctors said she was little. They guessed her to be about 6 1/2 pounds. Then she began to cry, and our family doctor said, "She's small but mighty!" Well, Audrena had them fooled. She was not all that small, at 7 pounds 8 ounces.

Audrena's newborn hearing screening came back referred on the left ear. Dr. C. told us not to worry, that about 50% of her babies are referred and test normal at a later date. We were not worried. After all, our other children had normal hearing. We got involved with life, and I needed time to heal from my c-section, so Audrena was 5 weeks old when we took her back to have her hearing re-screened. She was milk and soy protein intolerant, and we had not worked through some of the congestion that went along with it. Both ears were referred that day. The Audiologist advised us to just come back when her head had cleared up.

Daddy took Audrena back when she was about 3 months old. The left ear passed screening, but then she became fussy and just would not cooperate for them to re-screen her right ear. The Audiologist called it a pass on both ears since she had passed screening on the right ear at birth.

We continued to really enjoy life as a family of 5. Our older children just adored their baby sister, and we felt like our family was complete with 3 children.

Fast forward a few months. When Audrena was about 7 months old, I began to wonder why she wasn't saying "mama," "dada," or "baba." We thought she might just be slower to talk than our other children, who were actually early. In fact, she was later to sit up, too. She finally sat at 7 months, but she was relatively wobbly. At Audrena's 9 month well-check, I asked Dr. C. about her lack of speech. She advised us to just keep an eye on her because she might just be a little later. The third child often doesn't have to talk as soon because the older siblings tend to talk for her. So we did just keep an eye on her.

At 10 months, I decided we really needed to have her hearing checked. She still was not talking, although she did make plenty of other noises, and she did not seem to react to noises much at all. I made an appointment for her to see the Audiologist at our son's ENT doctor's office. Audrena did not do well at that appointment. She was referred on both ears.

The Audiologist had us come back a week later when we could see the ENT, Dr. P. They repeated the Tympanogram and OAEs, and again she was referred on both ears. Dr. P. took one look in her ears and said, "I don't know how her ear drum could have showed any movement at all. Her ears are full of fluid, and she has a double ear infection." We made the decision to place tubes in Audrena's ears since she couldn't have an ABR with all of that fluid anyway. Dr. P. was confident that we would not need to do an ABR and would notice an improvement in her hearing after the surgery. That made sense to us. Our son had needed tubes.

Audrena had her tube surgery when she was 11 months old. We thought we noticed an improvement in Audrena's hearing, but we couldn't really be sure. It still seemed hit and miss as to whether she would respond to sounds. We did, however notice a huge improvement in her balance. She was steady, and she quickly began to crawl, pull herself up on furniture, and cruise. We went back a month later for repeat testing. She failed the OAEs yet again, but she had fluid in her ears. Dr. P. sent us to Sioux Falls for an ABR.

The ABR was done March 21st, when Audrena was 12 months old. The Audiologist told us Audrena had severe-to-profound hearing loss, that Audrena would need cochlear implants, and she referred us to Boys Town in Omaha for a second opinion. We were crushed. How could this be possible? How could such a perfect little angel not be so perfect after all? How could this happen when we had two other children with normal hearing? It must be a mistake. After all, we did take Audrena to Dr. C. just after the ABR, and she had strep throat and an ear infection. Her lymph nodes were swollen and pressing on her Eustachian tubes. That must have caused an inaccurate test. Right?

In the meantime, I buried myself in research as a way of dealing with my grief. I read everything I could find: research studies, websites, blogs, books. I learned about the tests that would be needed to determine whether a person was a cochlear implant candidate. I felt like we were missing tests. I cried. I tried to prepare myself for the future. I rocked Audrena to sleep, and I cried. I tried to make it through my days at work without tears. I tried to explain to Reyana and Kelton that Audrena couldn't hear them when she talked to them because her ears didn't work. She couldn't hear things that they could hear. I cried. We learned a few signs and taught them to Audrena. We cried some more. I contacted our Birth to 3 Connections program to get Audrena signed up. I looked for any programs that might help us, but it was like walking blindfolded in a maze. I didn't know where to go or what to do next. I requested all of Audrena's medical records that might help explain her hearing loss, and I gathered them in a binder. One day, I found an e-mail address on the University of South Dakota's website, and it put me in contact with an Audiologist, Dr. M. In between it all, I cried some more.

We went to see Dr. M. at the end of March. She is USD's cochlear implant specialist and had started her career in Omaha. She went over Audrena's history and previous testing with us. After a few minutes she told us that no one could possibly tell us from the tests Audrena had done up to that point that she would need cochlear implants. Key pieces of the puzzle were missing. We needed more. She did do a Tympanogram and OAEs that day. Audrena did not pass. But we felt validated. Someone had listened to us! Someone really genuinely cared. Someone agreed that we were missing information. It was the first good day in months.

Dr. M. called Boys Town and consulted with them before our appointment. When we arrived, the Audiologists at Boys Town did a Tympanogram, OAEs, and some sound booth testing. Audrena tested the same. Then we met Dr. L.'s nurse, and she went over the medical questions. I gave her the binder so she could make copies of all of the records. Through a crack in the doorway, I could see Dr. L. reviewing things. He came into the room, introduced himself, and then stood against the wall as I unleashed a myriad of questions and concerns. Finally, when I was done, he examined Audrena and explained that we really did need more thorough tests. He was very considerate of our travel time, costs, and the need to put Audrena under anesthesia. Dr. L. told us that we would need a sedated ABR, and they typically do those at the downtown location. However, because he wanted to minimize anesthesia and travel, he would schedule Audrena for OAEs, sedated ABR, bone conduction, and a CT scan all at once at their West campus. He would be there to see everything as it was done, and we would have answers that day.

I explained to Dr. L. that we did appreciate that, but we would also need to have detailed notes from him explaining the need for each test so that our insurance company could approve it since Boys Town is not in network. He told us he would do it right away, and we could take a copy home. I told him it would be ok to fax a copy.

He explained it would take a couple weeks to get us in for the tests, but a couple weeks was ok. He acknowledged our concerns that Audrena was in a critical developmental time frame, and we could not delay testing any longer than necessary.

We left our appointment feeling very confident that we had found a great doctor. We had not even left Omaha yet when Dr. L.'s nurse called to say that she had faxed the notes, and that Dr. L. had been consulting with another doctor about Audrena. They had decided to also book an MRI at the same time. If he decided that day that he didn't need it, then no harm done. At least if we did need it, we could have it done immediately. Wonderful!

In the next weeks, we still grieved and cried. I read more blogs. One day I stumbled upon a blog by a family just a few hours from here. Their daughter had received cochlear implants at 10 months old, and they had the same doctor! I felt like I hit the jackpot. Not only did they have a fantastic experience, but their daughter was completely caught up (even ahead of her peers maybe) before kindergarten. They also included tons of resources on their blog. I e-mailed them to thank them for compiling the information in one area, and for sharing their success story. They e-mailed me back to say that Dr. L. is wonderful, but to be prepared that he's meticulous and slow in the operating room and will lay out all the risks in advance. They told me we would be completely scared by it, but just to know that he his GOOD. They also told us the same thing that the Audiologist in Sioux Falls had told us, and that I had read in numerous places: the success of a child with cochlear implants is hugely dependent on the dedication of the parents. In order to get her caught up, we should be prepared to speak 30,000 words per day to Audrena. We talk a lot in our family. We could do that. That was when I decided that I would not let go of those dreams for Audrena that I had thought to be broken. I would not adjust my expectations. With our help, she would succeed.

I took Audrena for a walk one evening, and I wallowed in self-pity at the fact that she could not hear the birds chirping or the cars driving by. I have a lot of those days. But I also have days where I think that Dr. C.'s words at her birth would prove to be true...she is small, but she is mighty. Audrena is a persistent and smart little girl. Daddy told me she scored at the 2 year old level in some areas on her developmental assessment with the Birth to 3 professionals. I couldn't be there that day, so he was there for the evaluation. Overall, the early childhood education teacher was not concerned with any other area of development aside from the areas affected by speech/hearing/communication. Small but mighty. That's my girl.