Life as a Leach

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!!

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! ...

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!!!!!

  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 cla...

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 ...

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 birthd...

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 no...