Skip to main content

Post op day 5

 After a good night's sleep at RMH, Caleb and I walked back to the hospital to find that Abby had already had walked down to the playroom with pt!  Then ot came to  work on some functional skills like getting dressed.  

Caleb and Matt went to the Philadelphia Zoo today.  They had a great time, but I wish we all could have been there.  

 They brought Abby back a baby for Mia (her beloved red panda)!  She is in love!  The baby's name is Maya.


We did some painting with water colors today.  Abby painted a tree.  This is the final product.


This evening after they left and we ate dinner, I encouraged Abby to take another walk with me.  She is supposed to walk at least twice a day.  She pitched a humongous fit and screamed at me all down the hallway so loudly that the nurses came out to see what the ruckus was about!  I tried many times to explain why we needed to walk, but it didn't matter.  When we finally made it to the playroom and she was sitting again, she continued to scream about how awful I am.  Her sweet nurse came in to reason with her and explain how important walking is.  It didn't help much.

When we got back to the room, I sat down and told her how much I love her and that I am only here to help and take care of her.  My poor, sweet girl burst into tears and said, but it just hurts so much!  

Guys, this is tough.  This little girl is trying to cling to the tiny amount of control she still has over her life right now.  She's scared, hurting, and frustrated and doesn't know how else to express it.  She sincerely (and without prompting) apologized for being mean to me.  I know she isn't trying to be nasty.  I wish I could take all of this away!!

I only take pictures of the happy moments, but I thought it was important to share with you just how tough this is on Abs.  She is really hurting, physically and emotionally.  Pictures can be deceiving. She's making progress, but every step is painful.

Despite the rough evening, there were some things that were better about today!
 * Abby can now walk holding just one hand, with an occasional hand on the wall for extra support.
* We got a mat for the floor to practice transitions, and she's getting better every time!
* Abby got to feel the warm weather today when we went outside for a few minutes.
* She can get in and out of her wheelchair without a step stool now. 
* She can get in and out of bed with support, instead of us doing all of the work.

Prayer requests:
* Caleb and Matt leave tomorrow.  Pray that both kids handle the separation ok.  It's hard being apart.
* Pray for Abby's emotions and pain level and that she will be able to express them appropriately.
* Pray that I can show Abby my unwavering love and that she will know that everything I'm doing is to help her.

Comments

Mary Lou said…
Julie....
"Caleb and I walked back to the hospital to find that Abby had already had walked down to the playroom with pt! Then ot came to work on some functional skills like getting dressed." Go Abby, go!! Go Abby, go!! Go Abby, go!! Go Abby, go!! Go Abby, go!! ;-D
I am glad that Caleb and Matt could visit the zoo {an escape from Abby's post-operation journey} I am happy that they enjoyed themselves!! ;)
Abby's thoughts, feelings and emotions.... Her "humongous fit".... Break. My. Heart. I feel for her.... I feel for you.... Poor little girl. Thanks for "keepin' it real". :-(
"Abby can now walk holding just one hand, with an occasional hand on the wall for extra support. We got a mat for the floor to practice transitions, and she's getting better every time! Abby got to feel the warm weather today when we went outside for a few minutes. She can get in and out of her wheelchair without a step stool now. She can get in and out of bed with support, instead of us doing all of the work." Thanks be to God!! ;-D
Praying!! Hugs!! ;)
"Stay hard, stay hungry, stay alive", Raelyn

Popular posts from this blog

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)   Notice that it's not to get famous and it ...

Bath Time Photos!!

As promised, here are lots of photos of Abby's first bath. Caleb was supposed to be in bed, but the bathroom is right next to his room... "I'm not too sure about this..." Once she learned how to splash, she was all smiles! Her first good hair wash! Gotta protect the trach! She really liked getting water poured on her head.  It was cute! Smiley (and bubbly) for Daddy while he dried her off. All clean!!  (Note the Lysol wipes in that last picture.  They are NEVER far away!)

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun!  They played lots of their own music, with some classic rock mixed in for the adults.  There were also quite a few jokes and references to Baltimore, which was kind of fun.   The whole night centered around this robot named Rock-o-Matic, or "Rocko."   This is Mover Scott, and he wears Wobble Goggles that help him see new ideas.  Caleb and Abby have a pair of goggles too.  :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap.  The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers  Caleb did his share of singing and dancing too.  He knows m...