Jul 12, 2007

A day in the life of Skyler Part 2

Skyler is an early bird. He always has been, he doesn't sleep very well. During the night we go into his room and turn him over probably about 4 times because he can't do it himself. So we listen in on a baby monitor and when he grunts and groans, we know he needs to move.

Skyler gets up at 6:00 or so. We go into his room and flip him onto his back, check to see if he has wet through his diaper, and if so get him cleaned up. If not, get him into his chair and wheel out to the living room and watch the news. Skyler really likes the news, he thinks he wants to work as a weather forecaster someday. So this is cool, beats the heck out of some other shows he could watch. Never had to watch any purple dinosaurs! We put his tray on his chair and give him his communications device called a Dynavox. This is how he talks to us. He isn't conversational, but with time can get the basics of a sentence put together or tell us what he needs with pre-programmed buttons. His Dynavox can also learn IR codes like a universal remote control. So he can run the TV, Tivo, DVD player, computer, whatever.

He watches the news, sometimes going to news he likes on Tivo that he saved (he usually likes it when they mess up and laughs and laughs at them). This goes until about 7-7:30. Then he has breakfast, toast and eggs cooked really soft. Everything he eats has to be really loose, soft, undercooked, etc... He has trouble chewing things and swallowing. Then after he gets done eating, we get him out of his chair, onto the floor, to change his diaper and give him his medications. He takes Depakene for seizures, which controls them pretty well. He also take Baclofen to help reduce the spasticity in his muscles.

Since he is going to have surgery in November to straighten out his spine, we now have a G-tube to help him gain weight.

So now we also feed him additional nutrition through this tube right into the stomach. After he is fed, medicated, dressed, and stretched, we get him back into his chair.

If it's a school day, we go over homework for the day, and get his lunch bag packed for school. But it is summer, yea!!! So he usually wants to play on his computer for awhile. We go into the room where his computer is, and older iMac running 9.x software. Mac's were better with adaptive software than PCs up until just recently, and he has a lot of old games that will not run on newer computers. Skyler tells us what game he wants and we put in the CD. Then we get his Dynavox set up to talk through an IR device on the computer. Then he can run some easy games. It is one of the few things he can do on his own, and it makes him feel good to play these games even if they are young for him.

He will play for an hour or so, sometimes longer, then we need to go do something else. During the summer we look for camps that can adapt activities for him. Right now, he goes to a camp 2 times a week that he has some fun at, playing different activities, or going places in the community. Again, it is a bit young for him, but he enjoys it and it gives us a break!

If he isn't going to camp, he will go run errands with Kathy or me if I have a day off or some extra time. He goes to the store, to the mall, wherever we go generally. We have an adapted van that makes life a lot easier for us. Just wheel him into the van, front passenger side because his sensory problems won’t allow him to ride in the back.

At the store it is tough to push him in front of you and pull a cart behind you. So we usually go once a day and get just a few things. Errands always involve finding a handicapped parking space that some butthead hasn't taken, and dealing with the public. The end result always depends on what kind of day I am having, and if I feel like going to jail...

Lunchtime is like breakfast, soft foods like pasta, mashed potatoes, ground up whatever. Repeat the diaper change, medications, stretching, tube feeding.

After lunch depends on whether we have any appointments, sometimes there are doctor appts, sometimes we have to go to talk to school/Medicade/agencies or different entities that we work with that require visits. Skyler also has Physical therapy, Music therapy, and a Technology and Learning specialist that comes to see him once a week.

If no appointments or visits to places, we play some more computer, or he likes to watch Jeopardy and Wheel of Fortune. He has a bunch of DVDs that he has made (with our help) of different contestants on Jeopardy that he has found to be funny and likes to watch them again and again. We also have DVDs of different News people he likes and has met on tours. On occasion he will ask to play with an old toy from when he was young. We never throw anything away, he never forgets something he liked!!

Skyler likes going to Balleys with me to work out also. He usually watches his DVD player and I park him on the end of a row of stair machines or Elliptical trainers as I work out. It is fun for dad also because he is a chick magnet!

As we get into late afternoon and evening, he wants to watch the news again. We might get him out of the chair to spend some time stretched out, make sure he is still dry, and just hang. I have mentioned he wears diapers, it is because he cannot control his bladder and bowels (that darn muscle thing again). Peeing isn't a problem, it just runs out whenever and we check/change him a lot. Bowel movements are a major issue. This might be gross to some of you but I am so used to it I don't even think about it anymore. In order for Skyler to poop he has to have an enema and be "digitized". That means the old proctology exam twice a week followed by water. This actually is very common with folks who spend their life in a chair.

Dinner time is the same as other meals, pretty much the same routine.

When it comes time to get ready for bed, we do the nightly medication, stretching, and he has a bath in a bath chair. We modified our second bathrooms shower to be a flat area instead of a tub, so he sits in there and I give him his bath with a shower hose attachment. He gets dried, and has the dressing around the G-tube changed.

He usually goes to bed between 8 and 8:30. It takes him awhile to get relaxed enough to go to sleep, usually an hour or so of moving him around trying to find a comfortable position.

Kathy and I have our hour and a half or two to ourselves, but that usually involves taking care of things we don't get done during the day that demand both of our attention.

We go to bed after falling asleep in front of the news, then we repeat the nightly routine of flipping him over and repositioning every now and then. I do it more than Kathy (not that I am a better parent, I just sleep lighter).

So this is the typical day. Other things that may occur that shake things up are seizures. Skyler has two types, absence and grand mal. Both are controlled pretty well with meds, but still happen if Skyler has been under a lot of stress or in pain. Those two things tend to bring them on more. An absence seizure is where he just sort of tunes out, doesn't respond to anything for about 5-10 minutes. A Grand Mal is what you may have seen with someone who has epilepsy, where the entire body is shaking.

Skyler has also had to have a lot of surgeries for different reasons. Because he doesn't run around as he grows his legs get really tight. He has had to have hamstring lengthening, heel cord lengthening, and different procedures about once every year or so. He also had to have hip surgery when he was in 5th grade to rebuild both hips.

This is also common with kids who grow up in a chair. Your hip sockets round out as you grow because of weight bearing. Since that doesn't happen in a chair they do it through surgery. That was a nasty one, he was in a body cast for 6 weeks. The next big surgery coming up as I mentioned is the correction of his spine curvature. This will be 2 weeks in the hospital and over a month of recovery.

That is about all I can think of right now, I am sure there is more but it just has become such a normal part of the day we don't think of it anymore. This is not meant as a pity party, just to let folks know what goes on in our lives, and why we don't go to movies/see concerts, and generally don't know what is happening out there in the social world!!

Next time I will do a post on some of the cool things that Skyler does and has done in the past. Thanks for reading so far...


  1. He is smiling in ALL the Pictures, I think that is why I smile while reading this. It sounds like a very demanding lifestyle, but also extremely organized. He has a very happy look on his face in ALL the pics too. I get the feeling he flirts when out and about.

  2. I'm really enjoying this series, SD. As Cheer34 pointed out, he's smiling in every picture-- that says a lot.

  3. Thanks a lot you guys, Skyler is a real ham with pictures. He can be fussing about something and if you pull out a camera he is all smiles.

    Then goes back to being a grump!

  4. Anonymous1:00 PM

    You guys are great parents.

  5. S.D.- Yeah, this is fascinating. I'm really just in awe.

  6. Wow.

    When I was a teenager I spent a summer working at a day camp where a lot of the kids had CP. Until you spend time with them,(or read something like this) you don't really realize how much effort goes into the things we take for granted.

    It sounds like you guys have fun together.

  7. Dick: Thanks a lot, I'll bet you do the same tho.

    Chris: Thanks, please don't be in awe. We are just doin the best we can.

    Lulu: Thanks for dropping by, and good on you for working at a camp. That takes a special kind of person.

  8. I love all his smiles! I lkie the way you modified the van so Skyler can sit up front.
    If you don't mind my asking, what kind of chair does he have? (I worked for Invacare a few years ago and just by nature of working for the company I learned quite a bit about wheelchairs. I'm always curious about what people are using and how they like them.)

  9. Not a pity party at all - this is really interesting stuff.

    Have you guys ever gotten a babysitter? Or would you even trust anyone to do all that you do?

  10. Raven: The van we bought from Braun corp in Indiana. They take Dodge vans from the factory, lower them 18 inches and put in the ramp. 18,000 on top of the cost of the van! Kinda ridicules. His chair is a Quickie tilt-in-space. Makes it easier for us to get his hips pushed back into the correct position in his seating system.

    GKL: We used to get sitters for him about once a month to get out to a movie or whatever. There were a couple of neighborhood kids, and their parents would be on standby. But the neighborhood kids are all grown and gone, and Skyler is pretty big for most people to handle.

  11. Anonymous3:17 PM

    Very interesting. Thanks for sharing this huge part of your life with me.

  12. My pleasure Kirby, I always appreciate all of my blogger friends comments.

  13. all I can think to say is "he's a cutey"!

  14. Thanks for sharing this.

  15. Anonymous12:03 PM

    SD, a friend of mine uses respite care where she lives to have someone watch her son if she needs a few hours to herself to go out. Maybe they have something like that where you live?

  16. just wanted to say I thought these were two fantastic, very interesting posts.

    I know what seems daunting to me has become your daily routine, but I still think it's incredibly impressive. You guys seem like remarkable and wonderful parents.