Happy Halloween!

Happy Halloween! Brody had more fun handing out candy than actually trick-or-treating. We had to bribe him to go to all of 15 houses. He was scared of people in  masks, but loved the frozen costumes and minions! He would say, "happy Halloween!" after giving each person candy. Super proud of himself!

Not sure who was more excited to dress up, Brody or Papa (aka the Man in the Yellow Hat). 

Here's Brody saying the "Five Little Punpkins" poem. 

Guess What!

Brody has been in his mainstream preschool a little over two months. To say we are happy with our decision to mainstream him with regular hearing peers is an understatement. Being around other kids his age that are good speech and language models has improved his speech and language. There is very little he says now that we can't understand. His teachers are also able to understand the majority of his speech. His sentences have expanded to about 6-8 words per sentence. He's using correct grammar. We are amazed at the progress we have seen from him!

His new favorite expression is "guess what!" He has two most common ones we hear..."Guess What?" "What?" "Chicken butt!" or "Guess what?" "What" "Chick-fil-a is closed on Sundays!" He has a new "guess what" saying now...

Here he is when we told him...

I'm only about 9 weeks along. I have been super sick with this baby. I was sick with Brody, but nothing compared to this! I have been out of work for almost 2 weeks. I went back this week and have been exhausted after work to the point I lay down and can sleep until the next morning. Hopefully this ends soon! Although, they say if your sick, the baby is healthy! Keep me in your prayers please!

A wild two years!

Looking back on Facebook today, I was flooded with a lot of posts of people praying and thinking of Brody. Today will always be a special anniversary for our family. Two years ago to day, I took my little baby (he looks so little when I look back on pictures) up to Cincinnati Children's Hospital for his Cochlear Implant surgery. You can read about that day here and  here.

He was not happy about the no food or milk policy.

The worst part of the whole surgery for us was when the anesthesia kicked it. The hospital allowed us to walk him all of the way to the OR, which was wonderful other than the immediate affect of it and his limp little body. Brody was a trooper though. He bounced back quickly and healed wonderfully.

Dr. Choo has an amazing scar that we have not had any problems with. We have had a handful of problems with his magnet site. It will get red, irritated, etc. Usually it after a hair cut when his hair is thinner. We have switched the magnet on the outside of head that is attached to his processor from a 2 strength to a 1 strength. This is weaker, but so far we aren't having any problems. Dr. Choo had explained to us that as you grow, your skull changes. We will probably end back up with the stronger magnet again eventually.

September 16th is when we celebrate his actual "hearing birthday." This was the day his processors were activated and his "ears" turned on. We are going to celebrate his ears again this year!

Facing the Odds

Haven't posted in awhile. We had a fun and busy summer! Brody turned three in June. We had a "Brodeo" party complete with ponies!

Brody got a jeep for his birthday. He's not the safest driver, but he's obsessed with it! 

He also got a big boy bike from Papa Tom and Grammy. We have only been riding short distances because we can't find a bike helmet that fits. He has a big head anyway, and the helmets don't fit right over the processors. We've tried on at least 20 different ones now. I'm determined to find one!

We went to Kentucky Down Under down in Western Kentucky. It's a small zoo with Australian animals. Brody loved it! They also had a small cave you could explore. Brody's balance and my freaking out about the processors falling down a hole in the cave made me have anxiety, but we made it out fine!

Brody "graduated" from Heuser Hearing & Language Academy's deaf and hard of hearing playgroup. We're going to miss seeing Ms. Paula and Ms. Mary Beth every Tuesday! Look how much he changed in a year! My baby is growing up!

Also, look for the top picture in Heuser's new brochure! I was in the Memphis Oral School's brouchure when my mom worked at it. Keeping in the family!

We took in a few Louisville Bats baseball games. Brody is obsessed with baseball. More the national anthem, take me out to the ball game and the merry go round, but he loves watching the players too!

We spent time on Papa Tom's boat over July 4th. We forgot Brody's Nammu hat that helps hold on the Aqua+ when Brody's swimming, so we went with a patriotic rag. He thought it was so cool!

Jordan and I were able to attend the Usher Syndrome conference in New Orleans in July. We learned so much about new research on the syndrome. There is a lot of hope! Jordan is much better at writing up the conferences, so stay tuned for another post about that. We also played tourists for a bit. 

Brody starts school on Monday. We went to open house and met his new teachers,  Ms. Head and Ms. Shuck. He threw a fit when we left because he wanted to stay. He has a big boy back back and is ready to go! 

He will be mainstreaming in Shelby County with a regular preschool class. We are so excited to see his progress. His language this summer has exploded. He is using words that I don't hear many of my students using which is pretty amazing. His "incidental" listening skills blow me away. He learns so much just through listening and not us directly teaching him. His speech is a lot clearer, but still needs some work. There are moments that family can't understand him, but over all, many "strangers" are starting to understand what he says!

From IFSPs to IEPs

We met today with the Shelby County Public School system for Brody's Individual Education Program (IEP) meeting. During First Steps (his early intervention here in Kentucky), Brody had an Individualized Family Service Plan (IFSP). This outlined goals that his therapists would work on based on the needs of our family in helping Brody develop. They worked his goals into our daily schedule at home. The IEP is looking at how Brody's delays impact his education. Not that schools don't care about what goes on in the home, but their main focus is the supports and resources that he needs while getting his education.

Over the past few weeks, we've had the initial meet up with Shelby County Public Schools at our house, another meeting at the Northside Early Childhood Center to sign "permission to test" papers, and different evaluations of Brody. Jordan and I went with Brody for his evaluation with a speech and language pathologist. Brody did really well on the test. I thought he would do well, but he exceeded my expectations. When giving these assessments, there is a "ceiling" that you have to meet in order to stop testing. This usually means missing a certain number of questions in a row. Brody never hit ceiling on one of the test. He would miss two then get five more correct. I was amazed! That particular test looked at his receptive (what he comprehends for listening) and expressive (what he says) skills. His standard scores were averaged to a score of 111. The "average" is 100 and there is a standard deviation of 15 so 85 to 115 is the normal range. The kid who could not hear anything before the age of 15 months and has worked so hard since getting his Cochlear Implants for the last 20 months, scored above average in listening and spoken language!!!!! While Jordan and I were over the moon at how well he did, we started getting nervous about him actually qualifying for special education services under the hearing impairment label. We're so glad he is doing what he's doing, but we still think he needs services because he's starting a new environment where he is going to have to listen and participate in a large group (20 students compared to his max of 6 at playgroups). She also gave him a test that looks at his speech sounds. Again, he did well, but she had trouble understanding him when he tried to put words together ("connected speech").

My mom took Brody back another day for evaluations with a vision impaired teacher, physical therapist, and school psychologist. Brody never warmed up to the vision impaired teacher. Oh well. The physical therapist won him over by taking him to the playground and working with him. Brody was able to get around safely although she did see his balance issues. Over the last few months, Brody's balance has gotten a lot better. Because of the hearing loss and Usher Syndrome, Brody's vestibular system is all out of whack. This causes him to fall a lot and to do some things slower than other kids his age. He wants to keep up with the other kids and has been pushing himself to keep up. The psychologist looked at Brody from a pragmatics perspective. This is looking at how he interacts with others. Since there weren't any other kids at the evaluation, she went with Brody to see him in his VIPS preschool class. She observed what we reported about how Brody doesn't initiate play with other kids or unfamiliar adults. He also didn't take conversation turns, rather he answered with one word or phrase.

Today, all of these evaluators plus a chairman, Brody's current SLP, one of the preschool teachers for Shelby County, the Shelby County Special Education Director (who was a former deaf and hard of hearing teacher), my mom, Jordan, Brody, and myself all crammed into a little conference room to go over the results. He didn't qualify for Vision Impaired services, which we kind of expected. While he has the genetic testing to prove he has Ushers, it doesn't currently have an impact on his vision that would have an impact on his education. Like I mentioned earlier, Brody was able to do all that the physical therapist asked of him. Again, he didn't qualify for physical therapy, but we did write in the plan for her to keep an eye on him once he starts to see if he needs it once the school year starts. Brody qualified for speech therapy (yay!) but barely. He qualified with a mild speech delay. He's going to receive speech therapy 6 times a month. He'll be pulled out in a little group with other students working on similar speech goals. He also, barely, qualified to receive services from a teacher of the deaf. She will come into his room two times a week to help him work on his socialization and conversation skills. We've met his teacher of the deaf a few times and love her!

We are really happy with how the process went. A lot of people want to know why we decided to not put him at the school I teach at. For one, class size. The maximum number of students in my classroom is 6. You can only be so social with the same 6 students. Brody's weaknesses fall under that socialization piece. The second reason we want Brody at a typical preschool is the fact that he will have hearing peers to model speech and language. In Kentucky, you have to qualify for free, public preschool under having a disability or being below a certain income. I have had some argue with me that he will be in a class with students that aren't going to be good models for him. I have to disagree. Just because they come from poverty or have a disability does not make them a poor language or speech model. Brody learns best through incidental learning (or "picking things up" that he over hears). Being in this type of preschool environment allows him more access to do that.

Here are some other Brody updates since I haven't updated in 3 months. Oops!

Brody has become super obsessed with birthdays lately.  He thinks all birthday parties need birthday hats, balloons, blowers, and a cake. We celebrates Aunt Sara's birthday last night with a cookie cake. This really confused him! He knows all of the words to Happy Birthday. Others can almost understand all of his speech in it too!

Brody has continued his love for books, numbers, and letters. He also knows all of his shapes and how many sides they have. He corrected grandma the other day about what a stop sign was. "No grandma. Octagon. 8 sides." 

The car is an awesome time for language. Where we live, we have at least a 25 minute drive to and from pretty much anywhere. Brody reads books, sings, and has conversations about our day. He has recently started "singing" to the radio. He will tell me to "turn it on" aka turn it up if its a song he recognizes. He current favorite is Bruno Mars' "Uptown Funk You Up" which sounds bad when you have a speech delay. We try to discourage it in public. :)

We did our third Walk4Hearing this year! We were about $100 short of our goal of $2000. We will get it next year! Brody had a lot of fun! His cousins Mary and Lily came out to walk with us!

Brody has also become OBSESSED with baseball! We took him to a Louisville Bat's baseball game where he got a baseball form the pitcher. He thought he was the coolest kid there.

Brody has been drawing people lately too. Maybe he's going to be an artist like his Aunt Sarah Fromholt!

Happy International Cochlear Implant Day!

When I was a little girl, I wanted to follow in my mother's footsteps. She was a teacher of the deaf and hard of hearing. She's worked in both private schools for the deaf and public school settings. For as long as I can remember, I wanted to be not only a teacher, but a teacher of the deaf. Fast forward years later. My mom and I were both teaching at the same school for the deaf, in classrooms nextdoor to each other. When Jordan and I announced that we were pregnant, she knew instantly she wanted to retire and be a stay at home grandmother. Little did we know that our little baby boy would be born with a genetic condition which caused him to have profound hearing loss. 

When Brody was born, we were given the standard newborn hearing screening. He did not pass either ear, but the technicians reassured us that it was just fluid in his ears and they would retest before he left the hospital. When he was retested, he passed one ear and failed the other. They informed us the machine was malfunctioning. After going home from the hospital, we were back once more for another hearing test. This one was completed by the head technician. Brody failed both ears again and we were referred to an audiologist for an ABR. 

My mom and I thought if he had a hearing loss, it was probably just a mild loss. He would wear hearing aids and be perfectly fine. Brody startled and turned to loud sounds. We were professionals. There was nothing wrong. When Brody went to have his ABR, I had a meeting scheduled for one of my incoming students and didn't think it would be that big of a deal to have my mom take him and I would meet them later on. Half way through the meeting, my mom called and said I really needed to come back to the audiology clinic. Brody wasn't responding to the tests. The ABR bypasses just the ear and looks at the brain's responses. There was no fluid on his ear or equipment malfunctioning. Brody had a profound hearing loss. I was flooded with emotion. Would he find someone to marry him? Would be ok in school? Could he play football or baseball? Of course I knew the answers to all of these questions. Yes! He could do anything he wanted to. My former students are thriving thanks to good audiologists, awesome family support, and the advancement in technology.

Jordan and I soon decided that Brody would receive a Cochlear Implant. Soon after Brody was 5 months old, we received the information on his genetic testing. Brody had Usher Syndrome type 1b. We then decided that we wanted Brody to have bilateral cochlear implants (one on each ear). Louisville surgeons wouldn't do the implants in one surgery, so we decided on using Dr. Choo at Cincinnati Children's Hospital. 

Having the surgery was the easy part. Long, stressful, and emotional, but the easy part. Brody then needed intense listening therapy. You have to have the listening skills before you can learn the speech sounds. Brody was unable to hear any speech sounds (or anything really) so everything was brand new to him. He was 15 months old when implanted, but his ears were only days old. This is considered his hearing age. We are currently 17 months with Brody's hearing age. 

It's been 17 months since his activation. He went from turning to a really loud noise. To following three step directions, singing songs, and being a typical 2.5 year old. BEST DECISION WE COULD EVER MAKE!

Brody LOVES music! He loves to play the piano. He recently got Jordan's old drum sticks and could actually keep a beat. He can sing with tune. He can dance and stop when the music stops or speed up and slow down with the music. 

I 

He LOVES sports. He can sing "Take Me Out to the Ballgame." He can tell you the name of all the sports. 

We have to make sure we are staying current with his mappings (the programs in his processors). We aren't expected to go to see our audiologist other than every 6 months, however we have been going every 3 months for new maps or some adjustments to current ones.  With every growth sput, Brody's brain is also growing. It is important to listen to the sounds he is producing or not producing correctly. If he isn't hearing it correctly, then he isn't going to produce it correctly. 

Brody is SUPER goofy! He loves making people laugh. He follows in his Aunt Sara's footsteps and loves to entertain people! 

Brody loves new experiences. We recently had a lot of snow. More snow than I have ever seen! We have talked and talked and talked about all aspects of snow!

Brody was in the Shelbyville newspaper!

Brody's skills have come so far in these last 17 months!

We love Cochlear Implants. Best thing we could have wanted for Brody! Thank you Cochlear!

Jingle Bells, Jingle Bells...HEY!

Brody got to join my classroom for 30 minutes before he went to Heuser Playgroup one Tuesday while Grandma took JoJo to a doctor's appointment. You would have thought it was the coolest thing I could ever let him do. He sat with the "big kids" and was in heaven! 

That week Brody also got to go on his first Field Trip. He went with VIPS (his preschool for visionally impaired preschoolers) to Bass Pro Shop. If you have never taken your children there around Christmas, we highly recommend it. Even better than being at Bass Pro Shop, Brody got to ride on the school bus! 

The Davis families (Papa Brown's sister's family) came in town to see JoJo and celebrate an early Christmas. We went with some of them to the Louisville Science Center. They had a blast. One child is only about three weeks older than Brody. It's always good (and bad) to have someone so close in age to compare him to. I know that sounds horrible, but it shows where Brody's gaps are. Following directions wise, they are on the same page. Speech wise, Brody has a ways to go, but he is getting there. 

Cousin Jamie brought gingerbread houses for the kids to decorate. Brody was amazed!

We've been visiting with JoJo a lot over break. She gets upset when she can't see Brody. He is definitely her favorite person!

We spent Christmas in Ohio visiting with the Fromholts/Winkles. Brody had a blast with his cousins. He even allowed his little cousin to sit at his table with him. That's progress as he has been super jealous of her.

Uncle Jake and Aunt Sarah made Brody a Mickey Mouse chair for Christmas! It is super amazing! They also gave Brody his favorite gift, a construction outfit just like Papa Tom and Uncle Jake. Papa went out to the car and came back wearing his. Brody made his wear it all weekend (including when making breakfast). You can never be too safe. Aunt Sara (this kid has too many Saras in his life) also had bought him a construction outfit. So now, he has one to keep at Papa Tom's and one to have at home.

Brody left cookies (and diet coke) out for Santa on Christmas Eve. He was super concerned about putting them on the fireplace since the rules say he isn't allowed to touch it. Christmas morning he was just beside himself that Santa came to his house and ate the cookies! He continues to say "Santa eat cookie" when he passes it.

Brody sang "Happy Birthday Baby Jesus" all Christmas, so he was ready for Uncle Josh's birthday. ("Appy to you, 'osh")

We have been working on potty training. He almost has the hang of it. 

We also dropped the processor in the toilet. Oops! Brody freaked out! We have a dryer for the processors that we put them in every night to help dry moisture out with. It dried it out fast and it is still working fine. I figured it would happen sooner or later!

 Brody got to spend the night with Grandma and Papa Brown while Jordan and I went to the Notre Dame bowl game in Nashville. Grandma was happy to have therapy time back with Brody.

We are 15 months post implant now. Brody has come so far since that day! He wasn't able to give us any response with his hearing aids. We are so proud of his progress in that short amount of time. He still has a long journey ahead of him, but we have no doubt that he will be caught up to his peers sooner than later!