Auditory Nueropathy

Kelson had his second appointment with the audiologist today and had another ABR (Auditory Brainstem Response) test.  They want him to sleep through the test so we are to bring him hungry and awake.  He wasn't real interested in falling asleep at first, but gave in eventually.

They put electrode type things on his forehead and behind his ears.  Then they put a tool in his ear that makes different noises.  I'm not sure what exactly is happening but I can hear a difference. 

We got pretty much the same results as we did at our last visit.  It appears that Kelson's ear is working but his brain is not responding in a synchronized way.  I asked the audiologist what exactly that meant and she compared it to a radio that wasn't quite set on the right station.  You can understand part of what is being said, but there is a lot of static. 

Apparently Auditory Nueropathy is not a real common thing (much like the other issues that Kelson has already proven he was too tough for, like they hydrops and they chylathorax).  We visited with a lady at ECHO today that has worked with other patients with this diagnosis and she said she had worked with 8.  All of them had different challenges associated with the auditory nueropathy and different things helped them to cope with it.  Some have hearing aids, some have had cochlear implants, some use American Sign Language some use cued speech.  Each child is different, and as much as I hate the idea of waiting, that's all we can do right now.  Hopefully Kelson will mature out of some of these issues, and if not, we'll just have to figure out what works for him.

We also got a call from Early Intervention today (FINALLY).  The coordinator will be coming Friday morning to meet with Trever and me.  After that we will meet with a therapist to determine what types of therapy Kelson needs.  We have been recommended for speech and hearing help as well as developmental help.  They will work with Kelson on these things, but they will also help our family and friends to get the resources that we need to work with Kelson.  If we need to learn sign language, they will help us get the resources we need.  They will work with Claire for ways to play with Kelson to develop his communication. 

This is just another hiccup that we'll overcome together.



4 months

Surprise!  I finally updated the blog.  I'll do my best to keep you up to date from here on out and I hope to go back and add some pictures to the blog as time allows.  Needless to say, things have been a little crazy around our house for the past couple of months.  Both of us are back to work full-time (minus doctors appointments) and both kids are going to the sitters (Kelson's first day picture below)!

Since your update at 3 months, our little man has been a growing, smiling, bright eyed delight.  He keeps his eyes on his big sister, likes to cuddle with his mama, and upside down in daddy's arm is where he likes to be when the witching hour comes.  (Although he seems to be outgrowing his fussy times....thank you God!)

We've had a couple of different doctors appointments since our last update.  Last week he was up to 9 pounds 13.5 ounces and got 2 more shots and an oral vaccine.  He's still a little guy but he's growing and that is what is important.  We met with an ear nose and throat doctor at Carle to check on his hearing but really didn't learn much.  We go back to to ECHO tomorrow for another appointment with the audiologist.  Hopefully I'll update after that. 

Claire spent a week at Vacation Bible School and really enjoyed herself. She was a little timid at the Friday night program, but rocked it on Sunday!

Trever made a couple of trips to Springfield for the State Fair.  I figured I had missed enough work I didn't need to take another day for "fun". 

Trever and I took a trip to chicagoland for the wedding of my good high school friend Livi.  There four girls from our group there...they forgot to tell me to wear black! :)

I got a girls night out with couple of college friends and can't wait to do it again...soon!

Trever preached two sermons.

Claire went to practice school...or as normal people would call it...pre-school open house. 

And finally, this weekend consisted of fun at the Fall Festival, dinner with our new neighbors, checking out a new church, the Builta reunion, and school shopping with Claire. 

And finally, the picture some of you were waiting for! :) 

3 months

Or is it 3 weeks???  I feel like I have to justify both answers to anyone that asks.  Many people will comment on how new he is, how small he is or want to know how old he is.  I want to respond with his real age...3 months.  But, then I get a response like, "my grandaughter is 3 months old and much bigger than that."  How much do you really tell an unsuspecting stranger?

In all reality, Kelson is still a newborn.  He eats, sleeps, poops and crys.  During the day he eats every couple of hours and is starting to be awake a lot more during the day.  Then when about 4:30 p.m. hits, watch out.  Any time between 4:30 and 7:30 you will find him using those lungs that caused so many problems.  He'll sleep from 7:30-1 or 2 a.m. and then get's up for the day around 5:30.  Not a bad routine for a little guy.   

We are starting to see a few more smiles these days, and some of them seem real, not just gas.  He's eating about 3 ounces at a time and spent the day with Grandma Marge for the first time today. 

No News is Good News!

I know, I know there hasn't been a blog update in a while, but as the old saying goes; No News is Good News.

It is hard to describe how peaceful it is being together as a family of 4. Kelson is pretty easy going. He has been sleeping well, 4-6 hours at a time during the night, and eating 2.5-3 oz at each feeding. He does get fussy from time to time, but loves being held, and his vibrating bouncy seat.

We had his first appointment with Dr. Austman, who delivered him, on Tuesday. Kelson weighed 7 lb 14 oz and was 21 inches long. He had gained 9 oz in a week. If she hadn't known his history, I'm pretty sure Dr. Austman would have not known there had ever been anything wrong with him.

We had a pretty full weekend starting Friday night. Claire had some friends visit from her former daycare in Piper City. We had a great night with Miss Cierra, Miss Audrey and their crew. Saturday brought our first family cookout hosted at the new house. Kristas Aunt Carol was home from Florida, and her Aunt Janet came down from Chicago, so we offered to host lunch for the crew. We had 13, including Kelson, and enjoyed a great summertime meal of cheeseburgers, sweet corn, melon, blackberries, zucchini, pasta salad and brownies.

Today Kelson made his first trip into "Grandma Greats" house. We even left him for a couple of hours to spend more time with Great Aunt Carol.

This week is looking to be a busy one, and hopefully is rounded out by a trip to the Iroquois County Fair, and a first birthday party. It is great to be back enjoying the simple things in life. You don't realize how much you take these things for granted...

ECHO

Today Kelson had his follow up hearing test at the ECHO center (Expanding Children's Hearing Opportunities). The goal was to have him in a deep sleep during the test. When we arrived at the center, we went to a room with a rocking chair to feed Kelson and make him sleepy. They attached electrodes to his forehead and behind his ears. Shortly after getting a full belly, Kelson was asleep in my arms and they were able to begin the test. They placed a tube in his ear that was attached to the computer to produce sounds. Kelson was an excellent patient.

Unfortunately the results of the test were not what we were hoping for. Kelson has a hearing impairment called "Auditory Neuropathy" (AN). His ears can hear sounds, but the nerves have trouble recognizing sounds. Basically there is a miscommunication between his ear and his brain. We will not know the severity of his condition until he continues to develop, but hopefully early intervention will help the prognosis. We were told that this condition could improve as Kelson matures, and there are devices that can assist with hearing down the road. For right now we just need to wait and see.

Even though this was disappointing news, after what we have been through, this is a minor complication. Kelson has broken so many belief barriers, that I'm sure he won't let this slow him down. We know for a fact that God will not give us more than we can handle.

Otherwise Kelson is doing great. Last night he ate at 10 PM, went to sleep, ate at 2:30 AM, went to sleep, and woke up around 5:30. Hopefully he has his days and nights straight so we can continue to get a pretty full nights sleep. It is exciting to have our first weekend home together!

Family Time

Wow, the past two days have been great.

Tuesday night we tucked Kelson into his pack n play in our room after his bottle and he was sound asleep. He slept for 5 hrs, before I finally woke him up to eat. This is the first time he was ever really able to sleep in a dark, quiet place, since the NICU is busy 24/7. I got up to feed him around 2:30 AM and he was wide awake, so I spent some time hanging out with him on his blanket. He ate again at 6 AM, and after I fed him, I woke Krista up so I could catch a few more hours of sleep.

Kristas parents came and took Claire to the 4th of July parade in Bellflower, and Kristas grandma came over to hold Kelson for the first time. We ended up having an impromptu cookout at our house with Kristas family. Everyone left after lunch, and Krista, Claire, and Kelson all laid down for naps. I decided to do something I hadn't done in a looong time...watch a movie.

After everyone was awake, we took Kelson on his first outing. We went to our friends, The Todds, so Claire could swim in their new pool. Kelson and I hung out in the A/C while Krista and Claire swam. We went back home and got everyone ready for bed. This time it was Kristas turn to get up for the feedings.

Today I went and got a truckload of boxes and furniture out of storage, and we worked on unpacking and putting stuff away. Claire went to Miss Connies, so we could actually get some stuff accomplished. Kelson has really been easy going since we brought him home. As long as his belly is full, and his pants are clean, he is pretty happy.

Tonight we had more family come to visit. Kristas Aunt and Uncle brought pizza, and 3/4 of the Voelker clan came over.

Tomorrow we will be going back to Champaign for Kelsons audiology appointment. He did not pass the screening in the NICU, so we have to do some more investigating. It is a three hour test, and he is expected to sleep through it...keep your fingers crossed that he cooperates!

Home

Shortly after Kelsons morning feeding, the nurse gave him a sedative and we walked with Kelson down to MRI. Thankfully the sedation kicked in and they were able to perform the test.

After the MRI, Kelson was very groggy, and confused. The sedative seemed to make him a bit loopy and frustrated. Eventually he calmed down and fell back into a good sleep.

We spent the majority of the day just sitting around, waiting for the "green light" to go home. We continue to have doctors and nurses with 20+ years of experience say things like "I've never seen a baby as sick as he was survive", and "I feel so blessed to have worked on your son". Needless to say there were a lot of emotions expressed today, and tears shed.

Finally at about 2 PM the doctor had reviewed the MRI, and told us we were officially discharged. Even through we were free to go, our nurse advised us to wait until he had fully woken up, and eaten, so he wouldn't fuss on the drive home. Finally at 3:30 Kelson woke up and was ready to eat. After getting his belly full, we put him in the car seat, and loaded him and his belongings into the wagon. After one more tearful walk around the NICU, we were out the doors. I pulled the car up to the entrance and Kelson was wheeled out to take his first breath of fresh air.

Kelson handled the ride home well, and we spread out a blanket in the living room and all sat in awe....Kelson was home. Kristas parents brought Claire over, along with a delicious dinner. Claire was sooo excited to play with her new "toy" and doesn't understand why she can't hold him by herself, or feed him by herself. I'm sure she will adjust just fine.

Tonight we could hear the Downs fireworks, and Krista and Claire went out to watch them in the yard. What a great way to celebrate and amazing day.

We will continue to update the blog, but eventually it will not be every day, so feel free to check back often. Thank you for taking the time out of your day to join us on this journey. Every good thought, comment and prayer helped give us strength and helped us be able to bring our miracle home!