St. Joseph's Institute for the Deaf

We had our first in-home visit with our therapist from St. Joe's Tuesday. She walked us through the anatomy of the ear and how we hear, listen, interpret and then communicate. The human ear is an amazing organ!! She also showed us some ear molds and hearing aids and we practiced handling them - taking and turning them on and off, cleaning and storing them. It's amazing what all is involved, but we know with time, it will come second nature.

Today, we actually had our first visit with the audiologist at St. Joe's. Nathan had impressions made of his ears that will be sent away for his ear molds to be made. Nathan was such a trooper, but was definitely curious as to what was going on. We also selected the hearing aids to fit Nathan's impairment. Once his molds are made (takes a little over a week), Nathan will have his first pair of hearing aids!! We can't wait to get them on Nathan and start working with him to learn how to listen.

Uncle Lou

For the past several months, my Uncle has been fighting complications with congestive heart failure and numerous infections. His battle ended today and he is now in a better place with his wife and parents who went before him. It's more than difficult to say good-bye, but I know he's at peace and not in any pain. My Uncle never missed a single important day in any of our lives and will be forever in our hearts. Please keep my family in your prayers, especially my Mom and her siblings as well as my Uncle's two sons. This will be a very hard week to get through, but we are blessed to have such close family and friends for support.

Rest of the Week

We had a great rest of the week with visits from Nathan's PT and OT, a check-up with his GI doctor and then another team meeting with First Steps to add St. Joseph's Institute for the Deaf to Nathan's IFSP. We are now all set to move forward with getting Nathan fitted for hearing aids and learn how to use and take care of them. We can't wait to move forward with St. Joseph's!!

GREAT News!!

We heard back from the ENT today with the results from Nathan's CT Scan and MRI...all images look great!! We couldn't believe the news and are just ecstatic!! Nathan's inner ear anatomy is perfect and his cochlea haven't been affected by his medical history. We are thrilled to be able to move forward with hearing aids and nothing more invasive. We have our first appointment with St. Joseph Institute for the Deaf next week and can't wait to get the process started :)

Hanging Out in the PICU

Nathan made it through a successful round of testing this morning and woke up from under the anesthesia just fine. He gave his nurse in the recovery room a run for her money when she only fed him 2 ounces of pedialite when he woke up, but soon after we were settled in the PICU, I was able to feed him a full bottle. He sucked it right down and stayed wide awake for us most of the afternoon. Nathan's vitals have remained stable and as long as everything continues to go well through the night, we will hopefully be discharged first thing tomorrow morning. We are so happy and relieved Nathan made it through smoothly - thanks for all of your thoughts and prayers!!

Back to Square One

WOW is all I can say at this point. Once our ENT received word that we were sent home today, all hell broke loose!! I was actually glad we weren't the only ones more than frustrated and upset. After numerous phone calls with our ENT, the head of anesthesiology, management of the Pediatric Sedation Outpatient Unit and other nurses and staff at St. John's, we figured out there was a HUGE miscommunication with the anesthesiologist assigned to Nathan's case today and the order received from our ENT. After everything was said and done, it's imperative Nathan has these tests to give us the detail behind his hearing loss, anatomy of his inner ear and cochlea. We are now scheduled for Friday morning for these tests and will have to go through our strict feeding regiment once again Thursday night. Nathan will be admitted to St. John's overnight for observation in the PICU. Please keep us in your prayers...Nathan is such a trooper and all involved are trying to remain patient and strong!!

No Go

After an exhausting sleepless night preparing Nathan for his tests, we arrive at St. John's first thing this morning to find out his CT Scan and MRI are cancelled. During registration and the initial preparation with the anesthesiologist, we learned it would be safer for Nathan to wait until he is a little older to handle the sedation. We are beside ourselves why this wasn't communicated to us earlier. These tests have been scheduled for a while and everyone involved is very well aware of Nathan's situation and extensive medical background. We are trying to catch up on some sleep this afternoon and get Nathan back on schedule. These tests will be rescheduled in several weeks and we will start the process over again.

CT Scan and MRI

So tomorrow is the big day for Nathan's CT Scan and MRI of his inner ears. These tests will help the ENT get a clear picture of his ears and hopefully details behind Nathan's hearing loss.

We are trying to prepare ourselves for an eventful evening tonight. We cannot feed Nathan his regular feedings after midnight. He is on a strict diet from then on of clear liquids until 2 hours before arrival at St. John's which is scheduled at 6:30 am. Nathan has to be sedated for these tests and we just found out this afternoon that Nathan will have to stay overnight for observation in the Pediatric ICU. Due to his prematurity and other complications, they would like to keep an eye on him to make sure he does okay after coming out from under the anesthesia.

We are not looking forward to seeing Nathan back in the hospital all hooked up to machines again, but know it is for the best. It is going to be a LONG 30+ hours. Please say some extra prayers that all of the preparation goes well and most importantly we get some positive test results!!

Quality Check

Over the past couple of weeks, Andrew has been putting Nathan's things to the test. I was able to capture a few pics of our little inspector...


The baby bath tub works sitting down...


And standing up!!


These are the bottles we use to give Nathan his meds...don't worry, they're clean :)


One wasn't enough :)

Papasan seat works just fine!!

Happy 4th of July!!

We had a great week with just one appointment with Nathan and ended the week with celebrating 233 years of our independence!!

We visited The Moog Center for Deaf Education and spent the entire weekend comparing the three schools for Nathan in order to make the right decision for our family. After much thought and consideration, we have decided to go with St. Joseph Institute for the Deaf for Nathan's needs. We are excited to get the process started...Nathan first needs to get fitted for ear molds and then will move forward with hearing aids. All of Nathan's audiology needs and developmental therapy will be provided by St. Joe's.

Over the weekend we celebrated the 4th with both sides of our family. Andrew had a great time and the fireworks didn't bother him at all. We didn't see any professional shows, but his older cousins had a great time with whistlers and black cats. We are hoping next year Andrew will be old enough to enjoy a "real" show.


Our boys.


Andrew being silly.


Me with my sons - do I have my hands full or what!?!?


Family pic...I hope these get easier :)