"What lies behind us, and what lies before us are small matters
compared to what lies within us."
- Ralph Waldo Emerson

Wednesday, January 18, 2012

Cast Aways

Today was the big day. The day we had to take the casts off. I was dreading it all day. First, I stocked up on all the important supplies. Of course, the Chips Ahoy were totally essential.

The event drew quite a crowd.

Francesca was beginning to sense that something was going to happen and she was not at all happy. You know how sometimes you imagine things are going to be worse than they actually are? This was NOT one of those times.

The worst part was the gauze under the casts. They were stuck to her skin and scabs. We had to soak them in the tub for quite a while. Then I had to pull them off.

We had to take a little break after that. It was hard to see my baby in pain and so scared.

Poor Victoria. She was so upset at Francesca's crying. She wouldn't even look. We finally had to take her into another room.

Francesca felt a little better after her bath.

Unfortunately, we were not finished.
"Say What! We're still not done!!!!"

We still had to wrap each crevice with saline bandages. I was so stressed I had to call in reinforcements. Carol to the rescue! She is calm in a crisis and also not easily grossed out. She was perfect for the job. As you can see, I had the important job of trying to stuff Cheetos in Francesca's mouth to appease her.

The doctor also took away some of the skin to make her thumbs have deeper pockets. These had to be wrapped too.

Wanna hear some really exciting news! I get to do this three times a day for a week! I'm sure it will get easier - right? That's what I am telling myself, over and over.

We're finally done! A mere 3 hours later! Such a brave girl!

There is one thing that I have learned through all of this today. Things may seem impossibly hard, but if you have to do them for your child, you get tougher and you can do things you never thought you could possibly do.

Thank you also to Theresa, who kindly drove all the way over to our house just to bring us Chinese food! Without her, I think everyone would have gone to bed with a cup of dry cereal.


  1. Oh it just breaks my heart to see her in pain...I can't imagine what you just went through! But you are so right...you just do it. Doesn't matter how hard...you do what you need to do for your kids.

    Love you, friend!


  2. Oh you can just feel her pain in those pics. Bless her. Praying for you guys this week as you have to wrap and unwrap numerous times. Hope it gets much easier.

  3. I'm a de-lurker. I've been following your blog since you went to get the girls. My heart laughs with you, and hurts with you, and aches with you. I admire how you are able to roll with the punches. I wish I lived closer (I'm 2 hours east of Dallas, TX). But if you have to go to Dallas again, please, please let me know. I want to help however I can. Thanks for letting us share your life and your kids.

  4. Thank you Ruth! We will definitely be going to Dallas again, probably this year.

  5. I'm not lurking any more either. I'm sorry about the painful process (for both mama and Francesca.) So they gave her 2 fingers and a thumb now? (From what I see in the photos.) Also, if you ever have to come to Philly again and need anything, let me know.


  6. Oh my! What an experience! It's going to be a long road, isn't it? I know you have to take one day at a time, but just think...6 months from now this part will be behind you! I hope I can run into you in Philly one of these trips!

  7. I tried to delurk earlier in the week but the computer wouldn't cooperate. Your darlings are beautiful! Good luck with the bandaging. My recently adopted Ethiopian daughter came home with a yet unidentified scalp fungus which I get to scrape off daily. She hates it. I hate it. Then I read your post and have to acknowledge that I'm a big baby. But I guess you're right - when it comes to your kids you just step up and get it done.

  8. I hope Francesca doesn't have a ton of anxiety during the bandage changes. I'm trying to think of ways to make it less stressful. My sons love sitting in the kitchen sink, playing "putzi putz" (splish splash) with warm water. Since the gauze needs to be wet anyways, I wonder if you put her in a saline bath, you could just do it that way? I'm also thinking of how the dentist distracts kids... With videos. They have videos on the ceiling. I wonder if you could position a computer or tv screen somewhere at elbow-level, her hands could be "behind" the screen, and she wouldn't have to watch you do the wraps. Finally, is it safe to let her have some control? Choose who gets to unwrap: you or big sister? Dad or Auntie? Etc. Another idea: when kids have to do something painful at the doc,

  9. Whoops.... Finishing.... They have the kids visualize blowing out a candle. That big whoooosh of air helps regulate anxiety. Maybe F can do that. Or even blow out a real candle....on a real cupcake.... For being so brave!

  10. Sweet girl. I hope the process gets easier . . . For both of you.


  11. Oh wow! That made me hurt. Bless her heart and yours! Praying that it gets easier.

  12. Wow!! I love her beautiful fingers and toes! I'm praying that the days get easier for you both. :-)

  13. What a brave girl. And a brave momma. Praying that it all gets easier.

  14. Bless her heart AND yours:( I pray each bandage change will get easier. I know your heart was breaking for her. Poor Victoria looks so sad for her sister. Thanks for sharing your family!!! They are precious and you are an inspiration!

  15. Aww, sweet girl! She is sooo brave! And, so are you!! I was a mess just looking at the pics! And Victoria! It's not pleasant to see, but what a great thing that she has so much empathy for her sis.

  16. Oh poor baby and poor mommie!

  17. Ohhhh, poor sweet baby. And I feel sorry for Francesca too! Bless you hearts, and may the rest of this process go as well as absolutely possible!

  18. Hi Catherine. I am not claiming to be an expert but I am just wondering why they want you to change the bandages 3 x a day. Is it infected? I have quite a bit of experience with would care nursing as an RN and unless the wounds are draining and infected we would not change it that often. In fact the less you change a dressing the faster it heals. I can't imagine you doing this 3 times a day. How hard that would be! How scary for you and Francesca! I thought maybe you could check with the doctor or even a Wound Care Specialist (Registered Nurse) to see if there is another option. I know gauze needs to be changed at least once every 24 hours but there are also fancy products that can be left as long as 7 days in the absence of infection and drainage.

  19. Oh dear God, how seeing that hurts my heart! What a trooper she is...... shoot, all of you!! I hope that things get easier for you all. Lots of Krispy Kreme and Chips Ahoy!!!
    ((hugs)) from Houston!!

  20. Catherine, Glad to be friends with you on facebook. I just started perusing your blog and it brings back so many memories of the recent past with our son Isaiah. We travel to Dallas for his major care, but do everything else we can here in Atlanta. We're just down the road in Marietta if you'd ever like to meet.

    Breanne, We too have a child with Apert Syndrome and went through this a few years ago. The frequent changes and all of the saline in the bandages is not necessarily for infection reasons, but more to make sure the skin grafts stay apart from each other instead of healing together. The frequency is also related to making sure the bandages remain deep in the crevices so no webbing forms. The longer the bandages are in, the more apt they are to loosen and creep out. If you don't keep them tight to the metacarpals the skin grafts could fuse together and could result in less mobility or even more surgery down the road.


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