Pains and Joys of Raising a Disabled Child

Our first son was not expected, my wife and I were just married and both still in college.  When we found out we would be expecting we were both kind of shocked.  We weren’t sure if we were ready to accept the challenge, we had only been married for a couple of months and were living in a small apartment without air conditioning.  We were now given the task of preparing for a child and keeping up with school.

We found a local doctor and starting making our monthly visits.  During all of these visits there wasn’t much out of the ordinary.  Nothing to be alarmed of, everything was going really good.  It was early morning June 18, 2008, my wife’s water had broke and we needed to head to the hospital.  We didn’t have everything packed so getting out the door proved to be a bit of a challenge.  Luckily we were only 2 blocks or so from the hospital in a pretty rural area considering other cities in the US.  We made it to the hospital around 5:30 that morning with most of our things.

Now this was the same hospital that I worked at, luckily.  So I was very familiar with where to park, where to go, and which room would be the best.  We got there and were put into a room and began the wait.  We had taken a birthing class and tried to remember all that we had learned.  We pretty much figured out that we hadn’t learned a ton, or at least couldn’t remember anything besides how to breathe funny.

We tried to patiently wait for Cayden, our first son to enter the world.  We picked his name out only days before.  We loved the meaning of the name, friend or companion.  To this day he has lived up to his name, it fits him perfectly.  So while we waited for Cayden to come we had some family there for a short while.  During the contractions my wife had to wear oxygen because Cayden’s heart rate wasn’t recovering as well as it should have been.

We weren’t all that concerned at the time, mostly due to us not realizing what was going on. The nurses didn’t tell us what they were thinking which was a good thing at the time.  However, when Cayden did come out, the umbilical cord was around his neck and he was “blue”.  Our doctor stated that he wasn’t blue and that she had seen much worse.  It made me feel a little better, but when they couldn’t get him to cry I started to realize something was wrong.  They worked on him for some time trying to get him to breathe on his own.  Eventually he let out a small cry, enough that we started feeling better.

He still wasn’t breathing well enough on his own so he needed to head to the nursery for further watch.  So that evening we were alone for the most part.  Cayden was in the nursery and we were in the room.  We were able to visit and look at him, but he needed to stay under the oxygen hood so he could breathe.  It was and is sometimes still sad to look at the pictures from that day.  Sad because he had such a rough entrance into the world.

Since the birth was relatively quick and the pushing only took 20 minutes or so, the doctor stated he was in shock and that was part of the issue with his breathing. After 24 hours Cayden no longer needed the hood for breathing and was managing breathing on his own.  By the next day we were able to hold him and try to feed him.

His troubles didn’t stop there, he started to develop Jaundice and we had to stay in the hospital extra days while Cayden stayed under the billiruben lights.  We spent a total of five days in the hospital before we could go home.

My mom is a Speech Language Pathologist and when Cayden had trouble feeding she noticed that his tongue was a little “tight”.  This tongue issue made it hard for him to feed which added more stress to us.  We talked with our pediatrician about this issue but he felt that Cayden was okay and his feeding would improve with time.  It never did and eventually we were able to get an appointment with an ear, nose, and throat specialist.  She noticed right away that Cayden’s tongue needed to be cut so he could have better control of it.

So we scheduled a time to go to the St. Lukes in Downtown Boise, Idaho.  They are the main hospital in our area when it comes to children’s issues.  The surgery was mainly for Cayden’s tongue to get clipped but also to check on his throat and his borderline laryngeal cleft.  The doctor found lipids in Cayden’s lungs that showed aspirations. He has since outgrown the aspirations and has done well with the tongue clipping.

During this time we also noticed that Cayden would cry whenever we laid him down.  We weren’t sure if he was just fussy, if it was the formula, or something else.  We found out that Cayden had acid reflux and when he was laid down it was more pain for him.  So at night we had to prop him up with pillows so he could sleep better.

We knew Cayden might be different after he started missing some milestones such as sitting, crawling, rolling over and more.  We called the infant toddler program and they came out and did an assessment and found him to be delayed.  We started physical and occupational therapy as soon as we could.  The nice thing with the Infant Toddler program was they came to your house.  So every week Cayden was seen by his two therapist who would help him work on his fine and gross motor skills.  We saw a lot of improvement and saw Cayden begin to do things he wasn’t able to do before.

When we felt it was appropriate we also started him in speech therapy.  Speech is one of our biggest goals right now.  He is still considered non verbal and we are still working with him to get him to use pictures and sign to state what he wants. We have purchased him an iPad to use as a communication device and I’ll get more into that later.  But all the therapy helped him develop skills that he might not have learned on his own.  He learned to crawl, and eventually walk, he learned to stack blocks and thread beads.  He grew a lot during those two years.

After he turned three he was too old for the Infant Toddler program and we began the process of enrolling him into preschool.  In preschool he was in a structured learning environment with other students his age with some similar disabilities.  He also received speech,occupational, and physical therapy during the school week.  Cayden loves school and riding the bus.  He wasn’t always happy to be rushed out the door, but when he came home from school he was all smiles.

Around this time we changed pediatricians and Cayden’s new doctor ordered genetic testing.  We found that Cayden has a partial duplication of his 7th chromosome (7q 21.1-32.1).  This explained some of his physical anomalies such as his fused toes, extra cartilage in his nose, floppy ears, poor eyesight, and overall delays.  We are still in the process of learning more about his disorder and what it will mean for him.  This site was created to follow Cayden on his journey as he grows and as we learn more about his specific disorder.  If you have questions feel free to contact us through this site and please share your stories as well.