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Daily Living

I know for a fact that Cayden isn’t the hardest child to raise. For the most part he is an easy going kid who right now loves “Bo on the Go”. He
‘s watched the first season on Netflix over and over and over and over. However, there are times when Cayden is out with his HI (habilitative interventionist) that we then realize how different it is.

We definitely love Cayden, however those occasional breaks make us realize how much goes into raising a child with special needs. Cayden is almost 6 now, but he still requires lots of supervision. If you leave the fridge unlocked be prepared to run out of hot dogs and Kraft cheese singles. Or if he’s upstairs with the gate locked while you’re getting dressed you’ll find your Risk game scattered around the office.

Cayden also loves attention, he’ll tell you the same things over and over and scream to get your attention. This can be draining when your other son has something to tell you and you’re trying to listen to both. I think one of the hardest struggles of being a parent with a special needs kid is being fair to both. Cayden requires more of our time which causes our other son to act out for attention. Cayden also gets special trips to the doctors and people generally paying more attention to him. Cayden sometimes gets to do special things for therapy (swings, ball pits, climbing stairs, slides) which brother can’t always participate.

I wouldn’t trade life with Cayden for anything, he brings a lot of laughs along with him wherever he goes. I do wish that we could figure more about him and all of his needs so we could really give him what he needs. The paper from the doctors office really only describes 9 cases similar to Cayden. There are probably more out there, but only 9 in the brief report we got. So we don’t know a lot about what Cayden has, but we are constantly learning more about it.

We are continually finding out certain things are caused by his genetic disorder, we are also left continuously wondering if certain things are tied to the disorder. I don’t want to say ASD (Autism Spectrum Disorder) is a new fad, but it seems to be a popular diagnosis. We’ve had quite a few people ask if Cayden has Autism. At times it seems that would be an easier diagnosis. Autism is more widespread and more is known about the disorder than his 7q duplication.

Cayden’s 7q duplication, as far as I know, doesn’t have a name besides 7q duplication. I’m hoping that I can do more research and find out more about the duplication and some of the results of it. In some of my research so far, there is a lot of scientific language that makes reading the reports hard. It doesn’t say 7q causes this and that, but 7q causes (scientific language for 3 paragraphs).

This post might be more of a ramble, but its a ramble that comes from feeling inadequate to be a parent of a special needs kid. There aren’t manuals for how to be a parent for a kid without disabilities. Then when you have one that has disabilities it requires totally different knowledge. What I have learned as a parent of Cayden is, you need lots of patience, quick thinking, love, consistency (working on this one), adaptability, planning, improv, patience, patience, love, and more patience.

So here’s to an adventure to the library. I’m usually at work, but this week is spring break.

March 26, 2014 0

Hard Couple of Weeks

So the past few weeks in our house have been miserable. Strep throat (x3), pink eye(x3), ear infections(x2), coughs (x3), sinus infections(x2). It’s been a rough couple of weeks. Cayden has been on antibiotics to try to fix it all but so far he keeps getting sick. Lizzy has cleaned and sanitized the house several times but still they keep getting sick. Hopefully the sinus infection will be the last thing Cayden has to face so he can be ready for school. He is mostly in good spirits despite being sick, it’s hard to find food that he’ll eat. But spaghetti, that is one thing he’ll eat, he had 3 plate fulls yesterday for dinner.

Cayden has been breathing better since getting his tonsils removed. We still need to have another sleep study done to see if his apnea has gotten better. He seems to be sleeping better, he still gets up early in the morning, but seems to be sleeping better through the night. He is now able to say his cousins name, Kiki, which we are all excited about. He’s been having a good winter break despite being sick for most of it. He didn’t get a chance to go play in the snow. Hopefully it’ll snow again when he is feeling better and he can enjoy it again.

December 29, 2013 0

Home

We were able to leave last night instead of staying for a second night. The doctor looked at Cayden’s stats from a nap he took yesterday and determined that while his oxygen did drop, it wasn’t enough to keep him another night. We set up a baby monitor in his room so we can listen to him during the night.

He still has times where he stops breathing for a bit, but I think that is his normal. I’m not sure what our next step will be. I don’t know if he’ll need oxygen at night or if he’s okay just the way it is. Either way, he had a good day today. Ate better but still struggled a little bit drinking fluids. He did go out and play at the park. So he obviously feels good enough to play. We’ll keep him from school tomorrow to make sure he has enough time to recover. It is good to be home, nice to relax for a little bit during the day.

October 24, 2013 0

Extended Stay

We were only expecting to stay one night in the hospital to make sure Cayden was breathing okay after the surgery.

The sleep study showed that he had sleep apnea and would benefit from having his tonsils removed, So we went ahead and scheduled his surgery for both the adenoids and tonsils. That whole part went fine and his pain is fine just the oxygen levels are a little low. Well he isn’t breathing well enough for him to go home yet. His stats keep dropping when he sleeps to the point that it’s concerning for them. My one question is Cayden’s low stats may be his normal. We don’t monitor him at home, so he may have low oxygen nightly. We had the surgery to remove Cayden’s Adenoids originally, but prior to that had a sleep study to monitor how he slept.

I don’t think Cayden minds the stay at all. He gets to watch his favorite movies in bed, People are taking care of him all day. The only downside for him is when it’s time for medicine. In recovery he fought as hard as he could to avoid the medicine. Now he’ll open his mouth slightly for the medicine.

He still doesn’t have his full appetite yet. He’s not eating the ice cream or chocolate milk like he usually does. He also loves tortillas but didn’t really want it this morning. That’s usually our clue he doesn’t feel well or something is wrong. He normally breaks into the fridge at home and will walk around the house with his tortilla.

He’s doing good in general, just the low oxygen that is a little concerning. Again, we don’t monitor it at home, so this may be his normal and it’s finally being shown on the machine. If you would like to stop by just let one of us know, you can either call or text or send me a Facebook message. Thank you everyone for your thoughts and prayers.

October 22, 2013 0

Surgery Day . . . Again

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.

October 22, 2013 0

Surgery

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.

October 14, 2013 0

Rotten Eggs

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.

July 17, 2013 0

Missed

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 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.

July 5, 2013 0

New Update

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.

April 30, 2013 0

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