Translate Blog

Wednesday, February 27, 2013

IFSP and Developmental Pediatrician

Notre Dame bib curtesy of GG (Great Grandma Winkle)


Brody watched the Notre Dame game with Daddy (kind of anyway). He was decked out in all his ND stuff. (We'll let Daddy have basketball since we know who the real football champions are :) Roll Tide!) Sunday night, Grammy and Papa Tom came down for dinner with Brody. Jordan made some Jumbalya. Yum!

Monday night we had Brody's Individual Family Service Plan (IFSP) meeting. If you are familiar with an IEP, the IFSP is for kids birth to 2 years old. In Kentucky, this is for when the child is in First Steps, the early intervention program. When they turn 3 they start school and change over to the IEP. While the IEP is good for a year, the IFSP is reviewed every 6 months. So we had Brody's initial one when he was 2 months old and then reviewed it and wrote another one. When we wrote his last plan we had Kathy, his service coordinator, and Paula, his teacher of the deaf and hard of hearing. He also got audiology services through it. Shortly after that meeting, we added Physical Therapy to it, Ms. Pat. Paula was seeing some delays that she wanted advice from a PT on. His goals were to respond to sound, to roll over, and to keep his head in midline (straight with his trunk). He met two of the three goals. Responding to sound is kind of impossible for him since, even with his hearing aids on, he would need it to be as loud as a chainsaw to hear it.

We wrote a new IFSP plan for him. He will continue to have physical therapy, audiology, and teacher of the deaf and hard of hearing. We also added some visits from a teacher of the vision impaired. Although his vision looks okay right now, the vision teacher can give us some pointers and resources. We have a good one in mind and hope to get her added as Brody's therapist! Paula will start working on having Brody respond to vibrations of sound (holding his hands on the tray when you bang, toys that vibrate and make sound). Pat will work on sitting for 10 minutes, transferring toys from hand to hand, and crawling. Hopefully in 6
months, he can master these goals too! Kids with hearing loss typically have motor delays. Kids with Usher's have greater delays. So far, Brody has only been about a month behind of schedule. He's a tough kiddo! :)

Today we met with Dr. Susan Wiley. She is a Developmental Pediatrician. We saw her at the medical plaza across from the downtown Cincinnati Children's. We didn't really know what to expect. Pretty much, she is a pediatrician for kids with special needs. In the waiting room were kids with autism, MMD (mild mental disabilities), and some that you could tell had disabilities, I'm just not sure what. Dr. Wiley was really good. There was a big bed that Brody laid on. She gave him some blocks and a cup to play with. He wasn't too interested in them. So she gave him a bell to play with. He worked for about 20 minutes trying to get the thing in the middle of the bell out. He he got bored with that he grabbed her stethoscope and entertained himself while we talked. She was trying to observe how he interacted with the different objects.

Dr. Wiley said there wasn't really anything she could tell us to do that we weren't already doing. She thought we had all the right people working with him already and was happy we were adding the vision teacher. She told us we could use her as a resource if we had any questions or concerns but she didn't feel Brody needed to come in on a regular basis.

The Cochlear Implant team will meet this afternoon and talk about his surgery. They should let us know soon, but from what they all are saying, we are good to go. We are hoping for a June 24 surgery date. His first birthday is on a Thursday and Aunt Sara's wedding is that Saturday. We are hoping for Monday so they can leave on their honeymoon. She doesn't want to be out of town with her baby in brain surgery :)


Thursday, February 14, 2013

Surgery is a GO!!

I got a call from Dr. Choo's nurse this afternoon after work. She said everything from his MRI looks perfect! The anatomy is all how it should be. Dr Choo was pleased with it. She also said there was some fluid which is normal for kids Brody's age and this time of year. He'll probably have an ear infection come up soon.

We are so thrilled to have these results! Now we can move forward with planning the surgery. We hope for it to be the week after his first birthday in June.

Brody wanted to wish everyone a Happy Valentine's Day! And Happy Birthday Aunt Jodi!!!


Tuesday, February 12, 2013


First of all can I just say that I am absolutely in love with Cincinnati Children's. So far all of our experiences have been very smooth and amazing! We spent Monday night at Jordan's parents' house in Hamilton, OH. Papa Tom got Brody a HUGE stuffed lion. He loved it. We tried to get video of him laughing at it, but he kept staring into the camera when we would turn it on :)

We went to one of the Cincinnati Children's branches that was located in Liberty Township which is right down the road from them. Even though they had to sit in the waiting room the whole time, Grandma, Papa Brown, Grammy, and Papa Tom all stayed the whole time. We checked in and waited about 5 minutes to go back. Jordan and I got to go back with Brody. He fell asleep and took a short cat nap while his nurse, Tina, took his vitals and weight (21.56 lbs!). Then, he decided to wake up when they gave him the medicine to knock him out. Apparently it was cherry flavored, but Brody was not a fan of it. They used a syringe to slows put it in his mouth. He gagged and made faces like he did in the peaches video. Then, he screamed bloody murder for 25 minutes! The anesthesiologist said that after 30 minutes we would have to start an IV with more medicine to make him sleep. Tina finally wrapped Brody up in a warm sheet and held him tight untill he gave up and went to sleep. Then, Jordan went back to the waiting room with everyone else while I went to the MRI room with Brody. If you have ever had an MRI, you know how loud the knocking sound is. They put ear protection on Brody (I tried to assure them the loud noise would not hurt his hearing :) but it's part of protocol). The technicians first took scans of his brain. When those were done, they came in and put princess Leia looking things in his ears to take scans of the inner ear. He laid perfectly still and did great! He had the medicine at 9:10am an we got to recovery at 10:18am. Not too bad! Michelle was his nurse in the recovery room. Again, awesome staff. She assured me that Brody would sleep at least another hour so Jordan and I could go get some food from the cafe. She explained that they like for the kids to wake up on their own. Otherwise, they apparently go crazy cranky! Around 11:45, Michelle called my cell to let us know he was awake. She was feeding him a bottle of pydialite when we got back. He took his time stretching and continuing to wake up. Walking out, he was wide awake and took about an hour to fall back asleep. He slept for the ride home and has been up ever since! Clearly he didn't want to follow the "Your child will probably be groggy and sleep eight or more hours until the medication has worn off."

Ready to go! He wore his awesome dinosaur pajamas since they had to be snap and zipper free.
Quick cat nap on daddy. We were in the Lion King room (see all the sticks on the cabinets)!
Measuring his vitals. They ended up putting it on his toe since he was moving all over.
In the recovery room, Brody got to drink some Pedialyte.

The technicians said that Dr. Choo should get the scans within 48 hours. Then, they will call and set up an appointment for us to come back up and go over them with him. Hopefully, it won't take long to get an appointment to meet with Dr. Choo!


Friday, February 8, 2013

Bananas...Much Better Than Peaches

When we met with Dr. Choo last week, he wanted us to see a Developmental and Behavioral Pediatrician. From what we've read online, a Developmental and Behavioral Pediatrician is a specialized pediatrician that primarily works with children with disabilities. In Brody's case, we're guessing they will work with speech development and motor skills. We decided to go with Cincinnati Children's because Brody will be spending a majority of his time in Cincy and they have a wide variety of specialists. When we called to get him setup they told us our personal pediatrician had to send a referral. Dr. Sammons, Brody's pediatrician (who is amazing) tried to get him an appointment, but she was informed that due to overwhelming demand they were only taking referrals from the Cincinnati area. So she tried to call one in Louisville. They were booked out for more than a year! She said to see if Dr. Choo could get us in. I e-mailed Dr. Choo. He got his people on it immediately! We are now scheduled for an appointment February 27th! Woohoo!

Brody tried bananas this week. To say he liked them is an understatement! Apparently, my little piggy is just picky when it comes to squash and peaches. He has loved everything else!



Tuesday, February 5, 2013

Dr. Choo

Brody has had a bad cough all week. My mom took him to the pediatrician last Wednesday for me. They said everything was clear, but did an RSV test since it was going around right now. It came back positive. Poor baby! He seems to have gotten a very mild case though. Lucky boy! Brody's almost over it now. Just a little cough left.

We went to Cincinnati Children's hospital today to meet with Dr. Choo about Brody's Cochlear Implant surgery. WE LOVED HIM! He was very personable and knew his stuff. Dr. Choo said that he had about a dozen people on his caseload with Usher's, so he has become familiar with it. That is awesome considering it is rare! Cincinnati Children's also has an Usher's research team! Not his strand of the syndrome, but all of them are close enough that key information they find could help Brody.

He set up an MRI next Tuesday for Brody. (It is at 8am, so no food after midnight. Only Pedialyte up to two hours before...going to be hard for our little piggy!) Then, after he looks at the scans, we will meet again. Hopefully, the scans will show that Brody's cochleas are intact and formed correctly. From the outside looking in, everything seems to be okay. On Brody's ABRs (the brain response test they did to determine the deafness originally), there were waves showing sound responding at very, very loud decibels which give us hope. Pray that the cochleas are indeed there, intact, and formed so that the cochlear implants are an option for him. If all goes well, we hope to schedule the surgery the week after his first birthday in June.

Dr. Choo also agreed with us, that given Brody's Usher's diagnosis, simultaneous implant surgery is a no brainier. He said he only does it with about 20% of his patients, but he think Brody is the perfect candidate for it. So, Brody will go in for surgery and have both ears done at the same time. Usually kids get one ear done. Then, if they decide to get two implants, they will get one a few months to a few years later. There are higher risks for infections with the simultaneous and the mappings (where they program the outer part of the implant) can take a lot longer. However, it is becoming more and more common in other countries and now in more cities of the US.

Brody was not a happy camper this morning. Grammy (Jordan's mom) came with us to the appointment. She walked Brody through the halls and put him to sleep. We were able to talk to Dr. Choo easier that way! Thanks Grammy!


Brody has decided he loves all of his stuffed animals lately!