Today is the day! (CPAP)

Can you believe it? My DD is getting her CPAP today. No kidding.

If insurance doesn't cover it the purchase price is $1,046.71. I don't buy that at all. They're going to take care of this one way or another.

DD is so excited! I bought her some Disney princess stickers to put on the CPAP to make it her own girly thing. The stickers have been in the kitchen for weeks now.

If all gets worked out today, I'll get a pic of her tonight and post.

It's been raining all day and is nice and dark out. I love it. Feels like I'm back home. I'm glad today is the rainy day and not yesterday. I had to drive for the first time in weeks to the other side of town to see my pain man. He is keeping his fingers crossed that things from my surgery 2 weeks ago will maintain healing so I can have an uneventful Christmas, but he admitted his concern that this may be the honeymoon period; with EDS, it is easy for complications like the nerves resticking, scar tissue growing back, etc.

I'm going to not worry about that and continue to take things one day at a time. Nobody knows what will happen next in life or what is around the corner, so I going to appreciate what I have, both great and small, and be thankful for any opportunity I have to live and love others well.

ETA Pics:

Decorating the CPAP with Disney princess stickers


Sound asleep! It's a miracle!

Checking in

Thanks friends for the emails. Sorry I haven't been keeping up-to-date here.

I'm 12 days post-op. I'm hanging in there. I took my sutures out on the night of day 10, should have left them in longer like I was supposed to. I was impatient and true to being an EDSer a bit of the incision was open the next morning. (Isn't Ehlers-Danlos fun?) It's covered, clean, etc and I'm not worried. The scar will just be worse and at this point it's just one more anyway.

I've been keeping up the happy face pretty well I think. The surgical healing is going well but I've had frequent spinal cord pain that's been kicking my butt and wearing me to exhaustion.

Add to that this cold that I hate to admit I have but after sneezing half a zillion times tonight, it's hard to deny it any more (dang it). I feel like hammered crap. Being in denial somehow doesn't keep colds from getting worse LOL.

Oh, about my 5 year old daughter's CPAP progress: This whole thing started in March, she had sleep studies in August and Oct 1. After the doctor's office sent a partial script for the machine, the home care company had to track down the rest of it herself. The problem? She said our insurance will probably not cover DD's CPAP. I was shocked. She was submitting it anyway to take a chance but she was about to call the pulmonologist and request another prescription. This time, the script will be for oxygen at night; she is sure insurance will pay for oxygen. DD's oxygen saturation levels were around 69%, horribly bad. I am so aggravated. It's unbelievable she may not get the CPAP, as bad as she is. And with a 69% sat level, no wonder she turns blue. The kid needs help and now we are back in the world of insurance idiots.

It's not the end of the world though and life will go on. I will keep sticking with it and she will get the help she needs!

DD's CPAP; surgery info

The pulmonologist called today and believe it or not, the CPAP is FINALLY being taken care of. It's been 3 months since the first sleep study and 7 weeks since the second/CPAP titration. Her first study she averaged 12 events an hour; on the second with the CPAP, only 1 an hour.

Someone asked today about what the latest was with me and it occurred to me I might ought to give more info for those who have missed it. We leave the 3rd; have the 4th to relax and check out the city; pre-op appointments with the 2 surgeons on the 5th; surgery is the 6th.

Don't sweat the small stuff

I've been asked about some other daily issues of late so I thought I would do a post about these things that keep me going on a daily basis and help me remember there is more to life that than waiting for a particular doctor call, test results, etc.

The Babette blanket is coming along pretty well. I am part-way through Panel 7 so I just took a photo of panels 1-6. It's exciting to see some progress now. Working on it is an excellent distraction from the pain and for the most part I look forward to each and every square.


Collin wanted terrible to help me with the blanket and eventually I had him sit with me and "help." My friend took some pictures but I just now saw this one while uploading and is sure one of my favorites, his little hand in mine.


We do not have Meg's CPAP yet due to paperwork problems at the hospital. And thus, we continue to watch this 5 year old munchkin throw herself around as she tries to find air. Here, she lifts her head up and backwards so she can breathe, at least until her head falls back down. This is all done in her chopped up version of sleep.




The kids had their first baseball game today. Well Collin played in the spring but this was Meg's first game, ever. They both hit coach-pitch, both times at time.