Life as a Leach

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 ...

Abby got her new furniture tonight.  This was her while she was waiting for the guys to set it all up.     Chloe approves too!!   One of Abby's favorite things is that she can open all of the drawers by herself--with just one hand.  Her antique furniture was very difficult for us to open, let alone her!       She is one happy little girl!  I have some work to do tomorrow with organizing everything and we are still working on figuring out the best place for the feeding pole (it's making the dresser have to be off-center).  I'm going to get a new book shelf, get a twin dust ruffle, move the mirror, and put a new white wall shelf in.  There's work to do, but it is definitely an exciting day!

Caleb is going to be joining the glasses club!  He has astigmatism, so he will need them to see distances.   We bought two pairs because he's a scatterbrained 4th grade boy, but one pair will stay home all of the time.      

Abby's amazing one-on-one went on a Disney cruise and brought her back the sweetest gift!     She brought pictures of Abby and then got a picture taken with Anna, Olaf, and Elsa while holding the pictures.  She got them all to sign the picture and brought everything home for Abby in this case.  Isn't she the best?!?!?  Seriously!!!

It hit Abby last night that she's really kinda done with the halo.  Getting the news that she had to wear it even longer than originally planned didn't help much either.  But, we are all making the best of it and hoping that she is able to swim this summer.  She will be in a hard cervical collar for several months after this, but I'm hoping she can at least sit on the step at the pool and cool off.  This also means she will most likely still be in a cervical collar for our summer vacation. :( We are also going to have to change her scheduled intensive outpatient therapy at KKI because she will still be in the halo.  I'm hoping to call them today or tomorrow to push it back a month. As much as I try to plan things...lol!

Abby had a follow-up today at CHOP.  They are very encouraged by her progress.  The X-rays may have shown some movement of one of the rods, but it may also be the angle of the X-ray.  He wants to follow-up with her in another 6 weeks and do repeat X-rays.  But to be safe, the halo is going to stay on for at least an additional month, which means it won't come off until the end of April at the earliest.    We hadn't gotten our hearts set on a date for this very reason, so it's fine.  We figured it would happen, which is why we are just saying it will come off in the spring.  I'm glad he is erring on the side of caution. The orthotist changed the chin and forehead pads, as well as her brace shirt.  Everything was SO nasty!!  And there were crumbs all in her shirt!        I was able to gently wipe her down while the brace was off, but it was very painful because her skin is so raw.  I see lots of lotion in her futur...

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...