Living With a pinless halo: washing the face

The face is probably the hardest area to care for while in the halo. While the brace has nice sheep skin padding it, the head piece has hard, scratchy vinyl that sticks to the cheeks and jaw line. I have to actually separate Abby's skin from the material, and it is very painful. Several areas of her chin have bled and scanned over from being stuck too hard.

I've learned that I need to separate the skin from the vinyl twice a day in order to keep it under control. The one time I didn't do it in the morning, it was horrendous that night. She hates when I do it and I sometimes need someone to hold her down, but it is so much better if I keep to the schedule.

Each time that I separate the skin, I also use a stoma powder to dry up the moisture and help the skin not to stick so much. The brand we use is Karaya powder. This does help. We started out without it and I see a noticeable difference since we have been using it 2x a day. You can buy it on Amazon (you can buy anything on Amazon!!), but try to get it from the hospital if you can.

When I wash the face and down along the jaw line, I always go back over it with a dry cloth to get as much moisture out as possible. Use a thin cloth (we use the paper towels the hospital gives us) so that you can really get down in the crack. It's not fun, but it's necessary!! Trust me!

Comments

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS. If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan. The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google. My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!! (a combination of all 3 is great too!) :) Notice that it's not to get famous and it never wi

The Potty Man

Caleb LOVES to go potty! I have never heard a potty training story like this one....Caleb tells us when he needs to go, we take his diaper off, and he goes! Now, is it perfect? No, not at all! We aren't trying to potty train at at all, but we figure every time he goes is one less diaper we have to change! The only time we consistantly put him on the potty is when we give him a bath (he always pees in the tub, so we know he needs to go!) He almost always goes on the potty now instead of the tub though. When he's not "really" going potty, he's pretending to go potty! He's such a funny kid!

Lego Party: Favors

I'm a little slow in posting the Lego Party pictures, but I think I have a few excuses I could use. At any rate, I wanted to share what I did for the party! It will take a few posts, so stay with me. I'll start with how I did the favors. These are the goody bags I made. I just bought solid colored gift bags and matched scrapbook paper to each bag. Then I punched circles and attached them with the 3D foam tape so that the circles were raised. I used the keychain (explained below) as a name tag on the outside. These are Duplo blocks. I put a round magnet on the back and...voila! A magnet! (note: hot glue doesn't work so well...I ended up reglueing them with my apoxy because the magnets fell off.) I made crayons using Lego man crayons. Yes, I know this guy has lost half of his leg. The others were already packaged and I didn't want to open one up just to get a picture. I used a Lego mold to make the crayons. Caleb put small pieces of crayon in each m

Life as a Leach

Search This Blog