Sunday, February 26, 2017

Such a Sweet Gift!

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!!!

Thursday, February 9, 2017

Coming to Grips With Reality

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!

Wednesday, February 8, 2017

CHOP follow-up

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 future after the halo is gone!  

We were also able to get them to manipulate the halo headgear a little bit to make her ears a little more accessible for hearing aids.  The right side had become nearly impossible to put in!  Abby didn't like all of that much, but I do believe the end result is better. 

 

It ended up being a more traumatic visit than we had expected, but she's happily watching Annie in the car now with a promise of ice cream in Middletown.  (She's lost a few pounds since surgery, so we are increasing the ice cream intake!!) 😁

Sunday, February 5, 2017

Living With a Pinless Halo: Sleeping

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!


Friday, February 3, 2017

Living With a Pinless Halo: Learning More About the Face!

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 very tight and hard to get down in to clean.  Her skin is very dry there.  I do my best, but I think she will probably need some moisturizer for a while once the halo is removed.


Thursday, January 19, 2017

Ready for School!

We had a meeting at Abby's school today to get her ready to go back.  She is soooooo excited and exclaimed, "I'm so happy!" when we drove in!  This girl loves school, and why wouldn't she?!  The staff has been so wonderful and all of the kids were smiling and waving to her.  It was so sweet.

I went in to talk to her class and brought a little bear with its own little homemade halo to explain it.  The kids were so sweet and I emphasized that she is the same old Abby who loves purple, princesses, Calico Critters, dancing, and singing!  I think they will be just fine with everything.

We are so very blessed to have such an awesome and supportive school.  They really bend over backwards to accommodate our girl.  We are so grateful!!

Monday, January 16, 2017

A Weekend at Home!!

I'm always so good at blogging during hosputalizations--not so good once we get home!!  I seem to hit the ground running and jump right back into things, which is stressful and taxing!  

My mom and Dad did a ton of work at the house before we came home, which was amazing!  Dad even recaulked our bathroom and it looks great!  Have I said recently that my parents are awesome?!

Matt and I had been discussing selling Abby's loft for a while because of her mobility, but we didn't want to upset her.  She knows her limits and decided she couldn't get up there safely, so that made the decision easy.  We picked out some pretty white furniture and I got to work today selling her old stuff!  I can't wait to redo her room. For right now, Abby is sleeping on the crib mattress on the floor.  Chloe thinks it's her bed!

 

On Friday evening, we finally celebrated Christmas with the 4 of us.  We even had them sit at the top of the stairs like always!

 

Some of Caleb's favorite gifts were fencing and Harry Potter tshirts, Legos, and a Star Wars clock.
 

Abby also enjoyed getting Legos, as well as some clothes and a game called Pie Face Showdown.  She thinks it is hysterical!!

 

On Sunday afternoon, my parents came down to celebrate Christmas with us.  Abby really loved her Calico Critters sets and a camper for them, while Caleb was thrilled to get an Amazon gift card (which he has already spent!) Mom also made dinner for us and it was a really nice evening!

Matt and I gave each other a year of dates, which was really fun to plan.  I had the odd months and he had the even.  Each month, we will do something fun together!  We went on our first date on Saturday to see Mama Mia at the Hippodrome (poor timing, but I bought the tickets months ago!). We look forward to going to some movies, going to a food truck show, visiting gardens, doing a paint night, watching a comedy show, and other fun things!!

It was a busy, but productive weekend.  I'm officially back to work tomorrow after my extended "vacation," so I'll have plenty to jump right into!  My mom and sister are taking turns staying with Abby this week so that I can work.