Skip to main content

Post op day 3

As you read in my quick post, Abby was cleared for pt.  We haven't heard Dr. Campbell's official word about the sturdiness of the unique anchor he created, but at least she can start moving.  

The pt came at 11 and got Abby out of bed.  She sat on the edge of the bed, stood holding on to the bed, and sat in her wheelchair.  OT came later and did some similar work with her.  She will get daily OT and PT for as long as she is here, but we will also work with her. 

She is in a ton of pain from any kind of movement--ANY.  Standing hurts a lot in her hips, so she could only do it with a lot of support for about a minute.  She is also having trouble sitting up straight and holding her head up.  The left side seems to hurt more, so she is leaning on her right side.  We are trying to get her to sit up straighter, but it's hard for her.

Walking or lifting her legs higher than 3 inches off the ground is a no-go for now. It just isn't happening.  We are assuming that she will be sleeping on the main floor for a while when we get home. I told her we can have a camp out. :).  We will figure out a set up that will allow her to easily get in and out of bed without it being too low or too high.

We were able to figure out a way for her to safely get into her wheelchair without having to step up so much.  Any sort of shuffling (we are talking two or three shuffles of barely lifting feet of the ground toward the wheelchair or potty) requires a lot of support.  Matt tried just holding both hands tonight and she needed more.  

This recovery is going to take a lot longer because it affects her legs so much more.  She will regain her range of motion, but it will take time and a lot of hard work.  The Leach Therapy Center is open for business!! :) I contacted her private therapist today to let her know what to expect, and she said she would take us as often as we could get there.  

I was already glad we got her wheelchair, but now I realize it will be a necessity for a while!  Our pt here mentioned the possibility of Abby getting a walker to support herself while she is regaining her strength, so we will see.  

What Was Better About Today:

* She got rid of her PCA, which means no continuous stuff running into her!  She can be less attached!  

*. Abby has tolerated food and meds WONDERFULLY this time!!  She is usually a pukey girl, but I tried some new techniques this time that worked really well.  CHOP is great about listening to parents, and I'm really glad this worked!

* She made it to the playroom!!  This made her very happy!

* The dressing change is done and over with.  It's not pleasant, but it's done!

* She got in her wheelchair and is able to be mobile now.  She is tolerating her chair really well, so she can sit and play games.  

* Abby is eating SUPER well now!!!  I was amazed at everything she was eating!!  Come to find out, the order for her appetite stimulant was accidentally triple what we give her at home...but it is a confirmed safe dose and she is eating better than I have ever seen her!!

But the best part of my day was this:


MY WHOLE FAMILY IS HERE!!!!!  I'm so excited for us all to be together for the long weekend!!!  Abby was thrilled to see him.  I think he will be a good motivator this weekend.  I talked to him in the hall about Abby's very limited mobility before she got out of bed so that he would know what to expect, and he seemed ok with it.  He takes Abby in stride! 

Prayer Requests for today:

* we will have an awesome weekend as a family without any drama :)

* we will learn how to adapt things for Abby and be able to meet her needs at home.  

* She will continue to work hard and fight through the pain.  

Comments

Mary Lou said…
Julie....
I am breaking this LONG comment up into twain parts!! I so cannot do Twitter!! Ha!! ;-D
"The pt came at 11 and got Abby out of bed. She sat on the edge of the bed, stood holding on to the bed, and sat in her wheelchair. OT came later and did some similar work with her. She will get daily OT and PT for as long as she is here, but we will also work with her." Go Abby, go.... Go Abby, go.... Go Abby go.... Go Abby, go.... Go Abby go.... ;)
"She is in a ton of pain from any kind of movement--ANY. Standing hurts a lot in her hips, so she could only do it with a lot of support for about a minute. She is also having trouble sitting up straight and holding her head up. The left side seems to hurt more, so she is leaning on her right side." Poor baby!! I am praying that God take away this pain and heal her little body up!! ;-D
"Stay hard, stay hungry, stay alive", Raelyn
Mary Lou said…
Julie....
"Walking or lifting her legs higher than 3 inches off the ground is a no-go for now. It just isn't happening." I am praying for patience from both you and Matt, as Abby recovers on her own timeline, at her own pace!! ;)
"The Leach Therapy Center is open for business!!" Crack. Me. Up!! ;-D
She got rid of her PCA, which means no continuous stuff running into her! She can be less attached! Abby has tolerated food and meds WONDERFULLY this time!! She is usually a pukey girl, but I tried some new techniques this time that worked really well. She made it to the playroom!! This made her very happy! The dressing change is done and over with. It's not pleasant, but it's done! She got in her wheelchair and is able to be mobile now. She is tolerating her chair really well, so she can sit and play games. Abby is eating SUPER well now!!! I was amazed at everything she was eating!! Come to find out, the order for her appetite stimulant was accidentally triple what we give her at home...but it is a confirmed safe dose and she is eating better than I have ever seen her!! Thanks be to God!! Praise the Lord!! God is so good!! ;)
"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...