Choices

We were prepared to make lots of choices as parents.  Choosing a name.  Choosing a babysitter.  Choosing their first show pig and heifer.  Choosing where they go to college...well I guess there really is only one choice there.  But choosing the color of your kids first hearing aid..that's not something I ever expected to do. 

I mean, really, how do you make that decision.  What color is he going to like in 3-5 years?  Do you pick one that will blend in with his skin and hair?  Do you pick a color that is going to stand out?  Do you pick purple because that's what his sister would pick if she was getting hearing aids? 

If you want to cast your vote, you can check out your choices here.

While Trever is off choosing which suit to buy for his work trip next week, I'll be pondering be pondering beige or blue.

6 months, 7 months and a trip to the booth

I know. I know.  It's been a while.  Back off and catch up with me.   



 

A little over a month ago, Kelson turned 6 months old.  He weighed in at around 12 pounds 4 ounces if my memory serves me.  He was finally on the charts for height but is still lagging behind in the weight category.  We also started him on rice cereal and have slowly been introducing other vegetables.  He's not a big fan.  

The week after Kelson's 6 month check up, we headed to Carle for his LAST post-op appointment with the surgeon.  This time we saw Dr. Bowtie instead of the surgeon that fixed Kelson's hernia.  But, the good news is we're done going back to Peds Specialty!  One less appointment to go to!

Since then we've decorated for Christmas

Celebrated Kelson's first Thanksgiving - not very photogenic that day and not a fan of the mashed taters either.

Let Claire try her hand at feeding him. 

Finished out the football season with an awesome day to tailgate.

Claire learned to eat ice cream from the carton.

Claire got a fancy hairbow from Aunt Kyla & fuzzy boots from Aunt Ria for Halloween. 



And before we knew it Kelson was turning 7 months old!!!

Today we started a new set of appointments that will keep us on the road to Champaign for the next several weeks.  Kelson had his first trip to "the booth".  "The booth" is the soundproof room at Carle ECHO where Kelson will go 2-3 times a week until the audiologist can find just exactly what his level of hearing loss is.  We had a good first appointment today but she determined that his right eardrum was not as flexible as it should be.  He's had a cold for a while so she figured he had some fluid in his ear and suggested that we head to see the doctor just to be on the safe side.  So, off to see Dr. Austman he went.  She said there was some fluid on that ear but it wasn't pink so not much she could do.  Pretty much the answer we expected..  But, if it's still an issue on Monday it could effect his tests.  He goes back in the booth on Monday and again on Wednesday next week.  He weighed 14 pounds 8 ounces today at the dr. 

 

At 7 months old Kelson is:

Rolling back and forth

Smiling up a storm

Getting up at least once, sometimes 2-3 times a night

Wants to be held all-the-time

Chatters and blows raspberries

is not a big fan of baby food

drools a lot

does not like having a wet or dirty diaper

 



A Blessing for Kelson

On April 26^th I got to see my son for the first time after his helicopter ride to Urbana. I was excited to see him and Trever since I’d been away for both of them for about 24 hours, recovering from the C-Section. Shortly after I saw Kelson, Trever and I went back to our room to decompress and talk for the first time face to face, without an audience, since our world had been turned upside down the day before. At this point he told me he wanted to have Kelson baptized.

I was thoroughly against it. I was not giving up on my son. I felt that if we have him baptized we were giving God permission to take him to heaven and I wasn’t about to quit fighting for him. Up until this point everyone had told me it was ok to be scared and tried to make me feel like things were not going to be ok. I was calm and never doubted God’s intentions for Kelson. I knew he would be fine. The only time I really questioned if Kelson would be fine was the instant that Trever mentioned baptism to me. However, that is when I learned the real meaning of being baptized.

I don’t think I’ll ever forget his baptism. I remember sitting there in my wheelchair and watching Pastor Liz get a travel size bottle of baptismal water out of her purse. Not your typical baptism. I remember the NICU staff letting everyone that was there visiting at the time come back to his isolette even though only 4 of us were allowed back there at a time. I remember everyone sobbing, and feeling the real reason we were doing this was because he wasn’t going to survive to have a church baptism. And as Pastor Liz did the baptism, I remember feeling a huge sense of relief wash over me. She prayed for him, but she also prayed with me. At that point, there was not a doubt in my mind that Kelson had God on his side.

Before Claire was baptized, we took a little “class” with Pastor Liz. I remember having several conversations about people having a baby baptized and then never seeing the child in church again. We discussed the importance of not only the family raising the child in a Christian lifestyle but the idea that the congregation was making a commitment to support the child in his/her Christian life. Because Kelson did not have the commitment of his church family on April 26^th we knew we wanted to have a “church baptism”. And last Sunday was the day.

Our church does not believe in being baptized twice so we couldn’t really “Re-baptize” him. We are also in the process of finding a new church home in our new community and felt like asking the congregation at our old church to make a commitment to Kelson was being kind of hypocritical. But Pastor Liz had the right idea. She did a very nice, very simple, blessing for Kelson and for our family as we start the next leg of our journey. She anointed Kelson. She said just the right things. And we were able to share our little miracle with some of the most instrumental people on our team. Both the Piper City United Methodist Church and the Presbyterian Church have supported us spiritually and financially, helped us move, fed our friends, and stalked our blog for almost 6 months now. And for that, we are beyond thankful.

Yesterday was, in a way, just a symbolic gesture. But, it was also a glimpse back at how far we have come in the last few months and a stepping stone in to the next leg of our journey as a family. We are grateful for the church family that we’re leaving behind in Piper City and we are excited to find our perfect fit in our new church family in LeRoy.

5 months plus

 A friend recently sent an e-mail that discussed using the word "busy" when someone asks how things are going and it has continued to pop in my mind over the last few days.  Several people continue to ask "when are you going to update the blog?" or tell us "we're going through Kelson withdrawls".  So, instead of using the word busy as an excuse to why we haven't blogged, I'm going to tell you that blogging is not a priortiy these days.  We are living life.  Finding our normal.  Making our house a home.  Trying to be the best we can be at the careers we have chosen and raise two semi-well behaved, somewhat polite kids while attempting to keep them fed and bathed on a regular basis. 

So, what have we been up to since month 5....

Kelson has been growing like crazy!  He's starting to eat us out of house and home and we're anxiously awaiting the ok from Dr. A to give him some "real" food.  He has speech therapy on Wednesdays and physical therapy every other week.  He enjoys chewing on his hands, smiling all the time, and is quite the wiggle worm.  Kelson was 11 pounds 3 ounces at his 5 month check up. 

What else has been going on around these parts since our last entry?   We've had a couple weeks off from football games but filled them with other outings.  Last weekend we made our maiden voyage to Curtis Orchard with Trever's sister, Kyla and her two kids.  Everyone enjoyed themselves and we came home with pumpkins and apple fritters.  The kids really enjoyed playing together, running and getting muddy.  Kelson was a good sport through most of it. 

 After the orchard we headed to Rantoul to celebrate with one of our favorite 2 year olds.  Hunter had a construction themed party and all of our kids enjoyed playing with his toys. 

 Yesterday we lounged around the house and worked on little projects around the house before heading to Alex & Theo's house for a hog roast.  We enjoyed catching up with some Piper City friends and introducing many of them to Kelson for the first time.  Claire really enjoyed playing with Alex and taking a ride on his 4-wheeler. 

I caught this picture this morning before church.  Claire loves to hold her little brother...for short amounts of time...and Kelson humors her...sometimes.  They were both in great spirits this morning and it shows here. 

I also have a few prayer requests to share with our faithful blog followers.  Before our time in the NICU I probably couldn't have named a single person that I knew well that had been through a NICU or pediatric hospital stay of their own.  Since that time it's like premie and sick babies have been the theme. 

I want to share my friend Lydia's blog over at Corn Fed Kansan.  Her little girl, Lorena, was born around 28 weeks gestation and wasn't due until around December 1st (I think my stats are right).  But, she's a little fighter and doing great according to her mommy's blog.  One of the hardest parts for this family is that they live 2 hours from the hospital and don't get to visit as often as they would like.  Please keep them in your prayers.

Also, prayers would be appreciate for little Carter who had a very rough start with a diagnois of Cystic Fibrosis and had a large portion of his intestines removed shortly after birth.  I believe that his mommy & daddy got to take him home this weekend.

...for Gabrielle who was suppose to be born around Thanksgiving in Arizona but decided to make her appearance while in Illinois visiting. 

...and finally for Laia who at about 10 days old has been fighting a fever for a few days and took an abulance ride to Peoria. 

We know that all of you have prayed for us and we have truly seen the miracles that God can do!  Please pray for our friends that they may see those same miracles in their little ones. 
 

Dance, Football, Therapy...REPEAT

We are working our way in to a new normal which is filled with dance lessons, football games & therapy sessions.  Throw in a couple of 5k runs, harvest season and searching for a new church home to that list and we are figuring out what works for us. 

 

About three weeks ago, Claire started taking Dance Classes at J's Dance Studio in Heyworth.  It's about ten miles away and so far we've been on time both nights!  Tomorrow Trever is taking Claire and she is going to "teach him how it works" to go to Dance Lessons. 

 

 

 

I think this is our 6th season of having football tickets and our group continues to grow.  What started out as 4 couples, we have turned in to 4 families with 6 kids!  Kelson took in his first game on September 15th and was a pretty good little guy considering all of the comotion!

 

This past weekend we had a night game.  That means not having to get up early and having time to relax and get some things done around the house.  This also meant there was time for a special daddy daughter outing.  I'm pretty sure the highlight of Claire's trip was the tootsie roll she bought from the Knights of Columbus when they were driving through town.  But, she is now the proud owner of a Barbie fishing pole and is ready for it to warm up so she can catch something. 

 

Trying out new churches means that Kelson gets to try out some of his fancy new clothes.  Thanks to the Angus boys, we will never have to buy clothes for this kid!  And, he will never wear the same outfit twice.  he's the best dressed little guy in the county (even though his facial expression doesn't show it). 

We have also started speech and physical therapy in the past week.  Both therapists come to our house which is an awesome time saver.  Due to Kelson's diagnosis of Auditory Neuropathy, he will most likely have difficulty with his speech since he really isn't processing the words and sounds that we use to communicate.  We have lots of decisions to make regarding the path we want to take with this, but in the meantime we are working to determine what he does or doesn't hear and helping him to recognize voices.  We are slowly working on some signs out of a baby sign language book and will continue to find what is best for Kelson.  The therapist that is working with Kelson has worked with other kids with AN and will come to use every Wednesday morning. 

 

This morning was our first physical therapy appointment.  Since Kelson was premature he is a little bit behind with his muscle development.  We are specifically working with his neck and shoulder muscles and his grasp.  He seems to be doing fairly well, but we are trying to give him every advantage that we can.  She gave us some exercises to do with him that you can see in the following pictures. 

 

We have also been church shopping which is a bigger challenge than I expected.  Soybean harvest has started so I am on call 24/7 these days and pray that I beat all of the combines to the fields I have to inspect.  Claire took a combine ride with Uncle Kenneth and then hung out with grandma for a while tonight.

Preschool

Our baby girl headed to preschool last week.  She has been looking forward to this day since all the big kids are Mary's went to school without her a year ago.  Claire is in the 3 year olds class at Little Learners.  This preschool is a mission of the LeRoy Presbyterian Church and it has been great so far! 

 

When we went to the open house Claire noticed a little boy had a Buzz Lightyear backpack.  So, Claire decided she had to have a fancy backpack of her own.  Thus, a traumatic shopping experience ensued that resulted in the purchas of a Dora the Explorer backpack and Claire's first purchased pair of Nikes (which she insists on wearing all hours of the day, except for naptime). 

Each student has a cubby for their paperwork.  Claire was pretty pumped to show hers to me.

 And you can't tell by the look on Claire's face, but she loves Ms. Marca.  I've heard nothing but good things about her and the school so I'm sure Claire will love it!  She is looking forward to going back tomorrow and breaking Grandma & Grandpa in on the drop off procedures!



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.