Happy New Year (and Some Frustrations)

I hope that everyone had a happy New Year. It was uneventful at our house, which is all we asked for.

A lot of times, I turn to my blog out of frustration and this time is no different. It's a bit like venting, but you all get to read it instead of hear it. Here's what's bothering me this time: Cole still isn't sleeping well!

Neither Dalynn nor I have had a full nights sleep in so long I can't remember the last time I had one. The thing that's killing me is that it seems to be getting worse, not better. For instance, when we started maintenance Cole would have sleep issues for the week of steroids, then they'd calm down and he'd sleep fairly well again. Then, the sleep issues extended to the week after steroids, as well (and we're still having issues there). Now, though, for the last two months, his sleep issues have lasted almost the entire cycle! He's just barely getting into a "normal" sleep pattern again when the next round of steroids hits.

I just don't know how we're going to do it with a new baby on the way. As things stand right now, Dalynn and I alternate nights, so one of us gets some uninterrupted sleep. However, when the baby comes, it's not going to be fair to ask Dalynn to take any nights when she's going to be up with the baby, too. That leaves me to deal with Cole's sleep problems all by myself, night after night. I'd say that the only hope we have is that Ava will sleep through the night as quickly as Logan did.

Things are further frustrated by how conservative Cole's doctors are. Cole is having some real issues with coming off of steroids cold-turkey. The doctors at CHKD don't like to taper, though, so we've thought up to this point that it wasn't an option. However, on obtaining a non-official second (and third) opinion we've found out that other pediatric oncology docs don't have a problem with tapering kids off of steroids. We're going to ask them to taper Cole, and if they won't, we're probably going to go with an outside channel to taper him (using inhalers with steroids).

I'll be honest, I don't want to go outside of Cole's oncologists, but we feel that we're at a sufficient crises point that we have no other option.

Further, they won't prescribe him any kind of serious sleep aid. Now, I don't want to have to put my son on some kind of sleep medicine this young in life, but I don't know that we have much choice. We've pushed and pushed, and they finally agreed to ativan (sp) but it's only effective for 6 hours, which isn't really long enough. We haven't tried it to its fullest yet, but I don't expect huge results from it.

The depressing thing is that I was under the assumption that things would get easier the further into maintenance we got, but just the opposite has happened. It's hard to not get down in the dumps when everything looks bleak.

If I could offer up a few prayer requests, here's what they are:

• That Cole would sleep better.
• That the doctors would really listen to us and work with us in treating Cole's side-effects.
• That Ava would be an awesome baby, that she would have no reflux and that she would sleep through the night quickly.

The Alarm Clock

One of mine and Dalynn's biggest issues with Cole is that he's an extremely early riser. The child would wake up at 5:30 every morning if he could and most mornings he is up promptly at 6. I'm currently reforming my sleep patterns to get up at 5:45 am (so as to be into work at 7 am) but I still like to sleep in as much as I can, you know?

So, one of Dalynn's friends told us about using an alarm clock to teach Cole when it's OK for him to ask to get out of bed. They recommended using a clock with hands, but we opted to try it with a digital alarm clock.

Much to our amazement, it worked the first night we put Cole down with it. We covered up the minute digits so as not to confuse him. I showed him that night what a 6 was on the clock (I was pretty certain he already knew that, but I wanted to make sure) and reiterated several times that he couldn't get out of bed until he saw a 6.

The next morning Cole started crying at 5:30 but rather quickly stopped. Then, promptly at 6 am, he started crying again (that's how he asks to get out of bed). When we went to get him he was bright-eyed and bushy-tailed and ready to get out of bed. I asked him later on that day if he woke up before 6, and he said that yes, he had. I asked him if he waited until it read 6, and he said he had.

After a couple of days of this, he started saying that he went back to sleep if it didn't read 6. So, this gave me an idea. After all, it could have been coincidence as he generally wakes up right at 6 most mornings anyway, so what if the clock said, oh, 5:30 when it was actually 6? Would he wake up and ask to get out of bed, or would he wait until it read 6?

Lo and behold, when I set his clock back a half hour, he waited until his clock read 6 before he asked to get out of bed. So, Dalynn is now able to sleep til after 6:30 most mornings before Cole is wanting to get out of bed, which is a nice state of affairs. That 30 minutes may not sound like a lot, but it is when you're pregnant (just so you know, I'm normally gone by then. Up til I got this new job we would each take two nights/mornings with the boys so the other could sleep in til 7:30. Now, with me out of the house by 6:30 am, I can't help out like I used to).

The real test will come next week, however. He's going back on steroids, which normally brings with it a bad bout of insomnia. I'm interested to see if he'll be able to go back to sleep when he sees that it's not 6. I don't have my hopes too high, honestly, as he's not very interested in abiding by rules when he's on steroids, but one can always dream right?

I'll let you know how it goes.