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.


Thursday, January 12, 2017

Rehab Day 17

Today was Abby's last day of therapy!!  We will go down tomorrow to the spine team to say goodbye, but her therapies are officially done!

This statue is my favorite place at Hopkins and we visited it tonight.  Thank you Lord for all of the progress my girl has made!!

 

Next stop, HOME!!!!!

Wednesday, January 11, 2017

Rehab Day 16

 

Miss Abby got lots of compliments on her poncho today!  It's a light sweater material, so it's soft and not too warm.  It's blue, although it does look gray in the picture.  It has a hood too, which she loves!

The little lady wasn't overly cooperative in pt today, but she pulled it together for OT.  She was very happy that her roommate came back today after her surgery a few days ago.  She even made her a Welcome Back sign and a snowman ornament!  

The doctors removed Abby's bandage today and CHOP said she didn't need anything on top of it from here on out.  The incision looks great!!  I'm really happy with how it is healing.  Everything about this surgery and recovery has been so much better than the last one.  I'm so glad we didn't give up and stop pushing.  It was worth it.

I spent a lot of time today planning for her to go back to school and talking with the school staff there.  I'm going to go in and talk to her class next week so that they can ask questions and realize that she's the same old Abby!  The halo isn't quite as low profile as her last brace, so there's really no hiding it.  I'm going to demonstrate how the halo works using a floppy-necked stuffed toy.


We are both sooooo excited to go home.  Abby told Caleb, "Two more sleeps!" Which he mistook for two more weeks and almost had a heart attack.  :). The end is near!

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!


Tuesday, January 10, 2017

Rehab days 14 and 15

I went home with Caleb last night so I could work and attempt to get a few things ready for Abby.  I didn't get too far on that, but I was at least able to get a day's work in.  This is our summative testing season and it's very busy and stressful!  

Matt stayed with Abby last night and today, which gave him a chance to learn some of her care and the therapies she will need.  I am determined for this not to be a one-woman show! 😳. Of course, coming home to see the condition of my house after I have been away for a month was a bit stressful, since I really didn't have time to work on any of it.  Matt assures me it will be up to my standards by Friday.  🤔

Abby got some one-on-one time with a therapy dog, which made her very happy!

 

She also walked down 2 flights of stairs and all the way to the Hopkins tunnel to take a picture of the dolphins, then back again and up to flights of stairs!  She is working so hard!


Caleb seemed to have a nice birthday.  I really wanted to make it special for him as best I could.  We got him a balloon and made a bunch of signs for him on Abby's door.  Abby and I set up a treasure hunt for him with clues he had to find around the hospital.  (This was great sneaky PT for Abby too!) The final treasure was a hand-painted treasure chest Abby painted and filled with coins.  She was very proud of it and Caleb did a great job of making a big deal out of it.  We got donuts for his birthday dessert, then we stopped at Wendy's for Frostys on the way home.  

He has had a hard time with this hospitalization because it's the longest we have been away since Abby was born, and it came riding in the coat tails of the long hospitalization in September.  (That one was 14 days and this one will be 26.) Plus, it came over Christmas, New Year's, and his birthday, which was tough for him.  

We still have Christmas to celebrate at home and with my family, so it's not over yet! There are many more presents to open!  If you see him over the next few days, give him a hug and let him know he's a great kid.  The end of this hospitalization is near!!!

Monday, January 9, 2017

Happy Birthday Caleb!!!

Dear Caleb,

 

Ten years old--how did that happen?!?!  I'm pretty sure the last time I checked, you were a 2 year old who loved splashing in the bath tub.

Now you're double digits, and man have you come into your own this year!  You have blossomed into such a fun, wise boy.  I love how much you enjoy school and am amazed by your vocabulary!  It must be all of those books you read!  Every time I turn around, you have a new book because you've already finished the last one.  Thank goodness for libraries!

I'm so proud of your Carson Scholar nominee. It's an honor for you to be chosen by your school, and I love the wonderful essay you wrote.  

You have also been bitten by the acting bug, much like me when I was a kid!  It was fun to watch you perform in your first musical at church.  Now that you have a great part in The Little Mermaid at school, we are all humming the songs all of the time!  I love listening to you sing! (Well, maybe not at 5:30 am...just being honest!)

Caleb, your character and love for Jesus make me so proud.  You know what's right and true, and you don't let others sway you.  You are a light in the darkness, and it's evident to those around you.  

And as far as big brothers go, you are #1!  Your sister loves you so much and pines away for you when we are away.  I love to watch you two play together.  Thank you for being her biggest cheerleader and protector.  I pity the kid who dares to tease her, because they will have you to answer to!

Buddy, I'm proud to call you my son.  Happiest of birthdays!  I love you!

Love, 
Momma