So here we are again, in the hospital for a surgery. We’ve had 4 or 5 surgeries with Cayden now. However this will be the first time we are needing to stay overnight. All of his surgeries have been minor is the sense they aren’t life threatening. It hasn’t been a heart or brain issue or cancer. New teeth, removing excess tissue, stints in the eyes. All pretty minor to me. Pretty routine almost for us. We have become so used to the doctor visits and the questions about medications, how he reacts to anesthesia, and more.
It’s hard to know what to feel sometimes, should we feel something more than “just another surgery”? Or is okay to have gotten to the point where visiting the hospital feels normal. I guess the one difference this time is Caleb was worried leaving Me and Cayden at the hospital. We’ve never had this situation before, we now have to explain things to Caleb in more detail than “We’re going to the doctor for your brother”. We now have to explain to him what the doctors are doing for Cayden, why and what to expect.
At four, I don’t think he quite understands all of it. He’s not used to leaving us behind and doesn’t quite understand why we aren’t coming home. I can’t imagine how hard it would be dealing with a serious issue where you spend days even weeks in the hospital with you kid fighting for their life. I know families that have lost children and are right now in that battle. My heart goes out to them, they are in a very difficult time and may not have the answers to the questions.
Our hope is that Cayden will be able to sleep a full night without waking up due to breathing issues. We’ll see how it goes, right now he is doing okay. He is needing oxygen to keep his stats up to where they should be. Not sure if that’s normal or not, but we’ll find out in the morning I’m sure what tonight showed. Thank you everyone for stopping by, staying with us, and praying for us throughout today. It means a lot to know we are thought of and cared for. Thank you also for loving our little boy and taking time to show him that.
A couple of weeks ago Cayden had a sleep study to determine if he was indeed waking up at night and if so why. Well after the sleep study there was enough evidence that Cayden was waking up due to some sleep apnea. His surgery is scheduled for next Monday to remove both his adenoids and his tonsils. It’ll be more than an in and out surgery like those in the past. We’ll be staying at least overnight from what I’ve been told.
Sometimes it’s hard to be making decisions for him without being able to talk to him. We as parents are given the task to make difficult decisions for our children. This decision is pretty easy compared to the decisions other parents are facing with their children. However, it is still our decision for what we think is best for Cayden. He recently had dental work for his upper teeth that were almost gone. We think his teeth weren’t necessarily gone due to grinding but in part due to his genetic disorder.
So hopefully after this surgery he’ll be able to breathe easier and get better sleep. He was awake and in our room this morning at 5:30. Now I don’t know if that’s because he woke up due the apnea, or he was just ready to be awake. But I do feel that some of his behaviors are related to poor sleep. Again, hopefully if we can clear the airwaves he’ll sleep better at night and feel better during the day due to better rest. We shall see.
When we think of rotten eggs and children we usually assume that the child has bad manners or is hard to be around. Well in my case that’s not true. In my case it just means,
eggs were once again hurled from the fridge.
At least this time Cayden took the eggs outside. Not the best for outside or the smell since it’s almost 100 out. But in the last week we have cleaned our floors 3 times. Even now our floors still feel a little dirty. I’m not sure what his obsession is with the eggs now.
We placed them on the top shelf and he still managed to reach them. So we now are trying to put a lock on the fridge to hopefully stop his need to smash eggs. And hopefully he won’t be able to get in the fridge and hopefully he’ll forget about smashing the eggs.
So if he comes to your house, remember to hide the eggs and watch your floors.
The day after a holiday always feels like a Saturday or a different day than it really is. Today was no different. Every Friday Cayden has been going to therapy, every Friday except today. We totally forgot that he had therapy today. Since we were up late last night we took the extra time to sleep in, 9 a.m. The most we have slept in in a long time.
Cayden on the Fourth.
Cayden enjoyed most of the fireworks last night. There were some he didn’t care for, mostly the loud ones. The neighbors down the street had the mortars that you could feel. He wore his headphones to help cancel out the sound, we totally forgot to bring our own. He enjoyed the sparklers, but needed some help because he wouldn’t always watch which direction he was pointing his sparkler.
Overall Cayden has been doing well. I think summer has been hard because he misses the school routine and we don’t always have a routine from day to day. He loves playing with his trains and watching his new movie Finding Nemo. He recently got the movie for his birthday and has been watching it at least once a day. That’s the recent update from our Fourth of July.
Hopefully next week we won’t be as forgetful and remember his therapy appointment.
So we went ahead and purchased proloquo2go for my son’s iPad, it wasn’t cheap. We were at first hesitant about purchasing the app because we didn’t know what to expect, would it be better than cheaper apps and would it work? Well a week or so ago I got a call form my Mom with news that you could now lock the iPad. I looked into it and it is right in the settings of the iPad, no extra app required. You can even circle and block out buttons you don’t want your child to access. This is great because we can set the volume and lock Cayden’s iPad to the proloquo2go program and he can only use it for that.
Before he would just skip around and use it mainly for games, but now that we can lock it he has started to use it more to communicate. We are also trying to learn the program better and add more vocabulary words to the program. It is fairly easy to add words and folders, I just need to find a way to add pre-loaded folders instead of having to add words one by one. Other than that the program is great to use and very easy to adapt to Cayden. Hopefully we can get past the repeated words like pancake 10 times in a row. Right now it is a work in progress, with progress coming almost everyday which is great. I’ll update you when I figure new stuff out about the app, or improvements made to the iPad.
I know my goal was to write everyday, or at least once a week, but that hasn’t happened. So I will try to catch all of you up on where we are. In the summer I lost my job and had the chance to think about what I wanted to do next. Since having Cayden and learning more about disabilities I thought it would be nice to get involved in special education. I now work in a middle school special education classroom. This has been a time of learning and seeing just what goes into teaching a child with special needs.
Cayden seems to be really enjoying school and learning. Our biggest goal for him is learning to learning to communicate effectively. We are looking into getting a DynaVox for Cayden which would allow him to speak. He does have an iPad, however you can’t lock any of the games or apps on there. You could only have the communication app on there but then it would take away from the learning. So our next step is to get in contact with Cayden’s speech therapist and work on filling out the paperwork for Medicaid. The device itself cost thousands of dollars, however Medicaid will help pay for it which is great.
We are also hoping to get Cayden into a program that would provide therapy outside of school. The school setting isn’t designed to offer all the therapy needed. He usually gets thirty-minutes a week or so of therapy which just isn’t enough. With an outside agency it would bring it from minutes in a week to hours. So hopefully in the next couple of weeks we can get that started and get Cayden the therapy he needs.
So today we were late, which isn’t any different from any other day. But today was speech at the Elks Rehab in Nampa across from the hospital. While Cayden loves his speech teacher, he loves his iPad more I think. He loves to play his Thomas puzzles and listen to Veggie Tales over and over. But today it wasn’t time to just play games, it was time to use his iPad to talk. We are on the verge of downloading a talking program or an Augmentative and Alternative Communication program (AAC). The one we are trying out right now is Sonoflex. We haven’t purchased it yet due to the price.
However, we can use a free version that has limited capacity of the full version. So today in speech, Cayden had to ask for certain items using his “voice”. His therapist was reading a story and at one point Cayden had six options, she would ask him which one he wanted. Instead of just pointing to the item he wanted, she would help him touch the pictures to form a sentence. “I want a fish” then she would respond to that and give him a fish. The hardest part for us is knowing exactly what he wants, but having him use his device. Cayden will either just keep pointing and talking in his language or start whining. We have to try to keep him focused on using his iPad for speaking and not just games.
So today Cayden did good. He was able to stay focused for the most part and ask for things he wanted without wandering to different pages in the program. Tomorrow we will be getting together with someone from the Lilypad who will help us fill out forms and get Cayden involved in some more areas of therapy.
If you have any questions or have a story you would like to contribute feel free to let us know.
How many of us parents try to do much to protect our children? We all try to protect our children, but when do we let them go? This issue intensifies with a child with a disability. Cayden does a pretty good job in almost any situation. But sometimes when it’s a new situation we like him to stay with his brother. Recently we were at a function that provided childcare and we were just going to keep the boys together. However, for whatever reason this wasn’t possible and it really hurt me and Lizzy.
Cayden isn’t potty trained or verbal and we were asked to take him somewhere that didn’t provide diaper changing, we would have to leave our function to come get Cayden. We asked if he could just stay with his brother but it wasn’t allowed. It probably wouldn’t have been that big of a deal and probably isn’t, the night went well and there weren’t any issues. But when you want what you think is best for your child and it isn’t allowed it hurts. We felt we knew where Cayden would fit in better and where he would have more fun. I almost felt like lying about his age so he could stay with his brother.
Sometimes with Cayden we try to protect him from things we feel he either can’t do or wouldn’t want to do. In reality we should let him do whatever he wants to a limit. But the fact is he scares us. We can’t leave him alone on the playground because first, he doesn’t have fear, and second isn’t always the most stable. He’ll march up the stairs on the playground grab the opening and lean out. Now he hasn’t fallen, but it scares us. We could say no to playgrounds to protect him, but we’ve learned that we just need to be close by in case he needs us.
We try to protect him from other kids. Since Cayden can’t talk and likes to “screech” it causes other kids to stare at him. We usually try to be there to help him say what he wants or what he is trying to do. ” Bee Bee” is Veggie Tales, which no one else will know until they get to know Cayden. Some of the signs he does have aren’t the traditional sign which make it hard for others to understand him.
The fact is Cayden knows how to do a lot and we need to let him do a lot. The hardest thing will be letting him do what he wants and staying out of his way.
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.
Where our son was born
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.
Cayden in the Nursery
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.
Getting ready for surgery
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.
Pains and Joys of Raising a Disabled Child 