Life as a Leach

  After nearly 5 long months, Abby got her halo off today!!  We had appointments at CHOP, but we were NOT expecting for it to be removed today.  That was a very exciting surprise!  She had a Plastics appointment to check the wound first.  It is looking much better and he complimented us on our hard work.  He changed the topical medicine we are using and  said to keep debrieding the wound twice a day.  We have a pretty good routine for that at this point, so it's ok.  We will see him in a month.   Then we went to Ortho and got X-rays.  After he reviewed the X-rays, he came in and asked Abby if she wanted some good news!!  Eek!  We are THRILLED that her halo days are over!!  While it's a real possibility that she may go back in a halo in the future, it is nice to be done with it at the moment. Now, Abby is in a hard cervical collar.  Yes, it's still a brace, but she has MUCH more freedom now!!!!  She can take ...

One of the biggest worries with a pinless halo is skin breakdown.  Because the halo is right on the skin, it constantly rubs.  Other braces can come off to allow the skint to breathe, but not the pinless halo.  We were warned that this is usually the biggest issue. Abby has had her pinless halo for about 2 1/2 months now.  (WOW!!)  We have been very diligent at bathing her and checking carefully for skin breakdown.  She had issues around her jaw for a while, which we were able to address and basically cure!  Our recent battle has been around her ears.  Her left ear has been in a lot of pain from the brace rubbing against it. This morning, she was screaming in pain to the point where I really felt that I needed to see what the issue was.  I knew it was rubbing, but could only see redness.  This seemed like more than just a little irritation.  After shining a flashlight and getting creative with looking under the halo, I realized ...

I honestly thought sleeping with the halo was going to be a much bigger deal than it has been.  Once she made it through the first few days in the hospital (where she was in a lot of pain to begin with), she has been totally fine.  She can sleep on her back or her side, and doesn't seem bothered by it at all.  I never put it in her head that it could be uncomfortable, so she just learned how to adapt! Some have said that with a regular pinned halo, it is most comfortable to sleep in a recliner (or in a bed where the head can be raised).  I was prepared to have Abby sleep in our recliner in the living room if needed (thereby causing me to sleep on the couch!), but it hasn't been an issue at all.  She sleeps in her bed with just one pillow, just like always.  She seems very comfortable!

The jaw line is definitely the most challenging area to protect while in the pinless halo.  While we were using Karaya powder in the past, we realized that we were not able to get the skin dry enough after washing and the powder was almost creating a mud that stuck HORRIBLY to her skin.  She had multiple areas that would bleed and be so red and irritated.  It was miserable for her. I was hesitant to change what the hospital set in place, but my husband convinced me to try going without the powder for a few days.  Each time we washed the area, we tried to scrape out the caked on powder from the chin/jaw area of the halo.  After several days, I noticed that it was significantly less sticky.  We have been leaving off the Karaya powder for about 2 weeks now, and cleaning the area is SO much easier.  It isn't sticking and there's been no bleeding.  She is much more comfortable too! One thing I have noticed is that the band across the forehead is ve...

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 ...

So since you can't wash your hair in a pinless halo, you have to get creative with cleaning products and styling! I have tried lots and lots of different ways to clean Abby's hair.  The hospital no-rinse spray is worthless, so don't bother! You really can't use any of the shampoo caps because the halo is in the way.  I have been successful with just wetting the long part a bit with a damp cloth to tame it down. But for cleaning the hair, Morracan Oil is the best.     It's definitely not cheap, but it's worth it!  I've tried many dry shampoos and none have compared to this.  I especially like that you can choose a blend for dark hair so that white stuff isn't left in it.  This is one of my biggest annoyances with dry shampoos.   However, if Moraccan Oil isn't in your price range (my mom bought Abby a bottle!) or if you need to buy something at the grocery store, Pantene dry shampoo is pretty good.  The hair seems clean, but it ...

Since Abby is in a very rigid head and trunk brace, she is unable to move her head or bend anything above the waist.  This makes walking rather tricky, since she can't survey her environment. Anything on the floor is a potential hazard, which means we have to be very careful about clearing the way for her.  Matt and I have talked about some more changes that need to be made at our house, and we have begun talking to Caleb about the necessity  of him picking up his toys and shoes.   We haven't attempted changes in terrain yet, but we know that it will be a challenge when she can't see it.  We are teaching her how to feel with her feet as a way to prepare her for this.   School will be a real challenge, since we have no control over that environment.  But thankfully, her wonderful one-on-one will be watching out for her.  Still, there's only so much she can control in a class of unpredictable kindergarteners.   It will be interesting to see how...

Dressing is rather complicated in a pinless halo, we have discovered!  We already knew anything over the head was out.  The halo adds several inches to the circumference and it would make the neck of the shirt huge.  Abby has been in a brace before and she was able to wear button down shirts one size bigger than usual.  It wasn't too much of a challenge.   Now, the metal bar in the back of the halo connecting the head to the brace sticks out an extra 2 inches, making wearing button down shirts pretty much impossible!  I went up 2 sizes and she wasn't even close.  Going up 3 sizes would cause her to just swim in it length-wise.   On a whim, I threw in an Adidas jacket when I was packing her for this stay.  It is stretchy without a hood and is the only thing we have here that works!  Even other hooded sweatshirts I brought aren't stretchy enough to fit.  I may be able to go up a size on those, but we don't have any here right now. ...

At the encouragement of my mom and after realizing there's like NOTHING on the internet about a pinless halo, I have decided to do a blog series about living with a pinless halo.  I'm hoping that sharing our experience might help out others who find themselves facing a pinless halo as well.  Abby is in a pinless halo for at least 3 months while her body heals from a limited spinal fusion using Shilla rods.  The Shilla was placed previously in the Thoracic, but needed to be revised and extended up higher into the cervical spine to control her kyphosis. We are currently day 3 into this 3 month+ journey.  She was casted for the halo a few days before the surgery, which was a two hour process that she handled remarkably well!  She got to pick from probably 20 different prints for her brace, which made her happy.   The pinless halo cannot be removed by anyone but the brace creator (ours is NOPCO), and it is extremely tight against her body. ...