Just Wait and See

A blog about hope, despite the disabilities.

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Before and After

September 23, 2013 by Ellen Moore Leave a Comment

Just a few photos to show you how far we’ve come…

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Filed Under: Best Of, Perspective Tagged With: surgery

Good Report

September 23, 2013 by Ellen Moore Leave a Comment

Catherine saw her buddy, Dr. Miller, today for her post-op visit. He said she looks great and he released her to do nearly everything. No twisting yet. No lying on a therapy ball. No ATV rides. No trampoline bouncing over 6-8 feet. Other than that she’s cleared for play.

So she got fit for new leg splints to help her stand with good support. Thinking about what Sarah would choose, we ordered flowers and ladybugs with teal foam and black straps. They should look really cool. And she and Brian will make another trip next week to see if we need any wheelchair adjustments. We are definitely making sure she has all the right bio-mechanical supports in place in the next couple of months.

Official word is that she is about 2.5″ taller. That surprised us because her head came up 5-6 inches when she got in her wheelchair, remember? Miller explained that her official length prior to surgery was measured lying down. So the effect of the curve on her height wasn’t as pronounced as it was when she was sitting in her chair. That makes sense now that I think about it.

Great day in DE getting all set up for whatever is next. I remain grateful for all those at duPont who help along the way. Enjoy the photos!

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Filed Under: Hope Tagged With: surgery

And Now – Mom Breathes

August 28, 2013 by Ellen Moore Leave a Comment

What a remarkable feeling to have everyone under one roof after such an intense hospitalization! And thanks so much to whoever decorated our door and mailbox!!!! Super cool! And sometime Brian snuck away and found awesome yellow butterfly sheets. Hope you sleep well in your own bed sweet butterfly surrounded by these butterflies! You done good Little Bug πŸ™‚

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Filed Under: Gratitude Tagged With: surgery

Homeward Bound

August 27, 2013 by Ellen Moore Leave a Comment

We are in the car driving south toward home. It’s surreal! It’s all happened so fast and I just want every single person who helped us get through this – from docs and nurses to family and friends as well as co-workers and other business associates and especially The Big Guy upstairs – to know how eternally grateful we are for each and every one of you! Will write more later. For now, this is what sheer happiness looks like…

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Filed Under: Gratitude Tagged With: surgery

Unbelievable!

August 27, 2013 by Ellen Moore Leave a Comment

Catherine is coming home! I just got back to Maryland and immediately bought a ticket to go back to DE and help Brian get her home. Thank God for friends who have Sarah πŸ™‚ wahoo!!!!!

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Filed Under: Matter of Fact Tagged With: surgery

The A Team

August 26, 2013 by Ellen Moore 2 Comments

The best girls in the world surrounded by some of the best docs in the world. And yes – this was OUTSIDE today. Life is good.

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Filed Under: Matter of Fact Tagged With: surgery

Look Closely

August 26, 2013 by Ellen Moore Leave a Comment

I cried. I didn’t expect it. I had been told some parents do. And I didn’t really think I would be one of them. I was just so surprised at how much taller Catherine is now! Look closely at this photo and you can make out the black object on her right. That is her headrest where is USED to hold her head! Looks like they raised everything about three inches. Wow! Let the healing continue πŸ™‚

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Filed Under: Matter of Fact Tagged With: surgery

Notice Anything?

August 26, 2013 by Ellen Moore 2 Comments

Notice anything different in this picture? That’s Sarah in the bed and Catherine in the wheelchair! Yep. She got out of bed today and sat in a reclined position in a hospital wheelchair. The goal was 30 minutes and she stayed in the chair nearly an hour! Great job Catherine!!

In fact she did such a great job today that they moved us to the regular floor. Yep again! She’s out of the ICU hanging out in the ortho rehab area of the hospital. We expect to be here about five days. She’ll get PT 2x/day. We will learn how to move her carefully and rehab at home and they will watch her wound. So far, it looks great!

It’s nearly impossible to believe nine days ago we were dealing with a life-threatening reaction in the OR. In some ways memory is kind and I barely remember it. Though the tears and stress from it hover mere millimeters under the surface. I actually think its a blessing that I didn’t realize how sick she was and how miraculous her recovery has been.

Tonight I sit in a new room with her. It’s probably odd to try to understand how the transition to a regular floor can be so hard. Of course it’s exciting and means we are closer to coming home. Like anything though, we developed routines and comforts in the ICU and it feels a little like the net is gone. Reality is that Catherine doesn’t need that net any more. She’s flying high on her own and it’s mostly me that feels the need for a net. By the time tomorrow comes with its new sunlight to break into our new purple room, I probably will be past my need for the net as well. Let’s hope so. And by the way, God. Thanks for giving us a nurse our first night that we had years ago when Catherine had her hip surgery. I’m thinking she can pull out that net pretty fast if we do need it. I’ll go to sleep resting in that confidence.

Sweet dreams y’all. Enjoy these photos.

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Filed Under: Matter of Fact Tagged With: surgery

Sleep and Breathe

August 25, 2013 by Ellen Moore Leave a Comment

Catherine has proven the theory of the infamous Dr Levenbrown. It is, in fact, possible to sleep and breathe at the same time! Dr L made this astute statement during rounds when they discussed extubating yesterday. Catherine had a good night and remained extubated and breathing on her own. So Dr L is busy preparing his much-anticipated paper to report the finding.

They are taking out the arterial line today which means they believe she is out of the woods on her blood pressure issues. She still has her central line and that is typically one of the last things to come out before we leave. They plan to stop Lasix which means she has eliminated enough fluids that she can probably handle it on her own now. She needed a couple of hits of morphine last night but who can blame her? Otherwise she is only on Tylenol for pain. She is a champ!

She’s also tolerating full feeds in her gut just like she does at home so she should start coming back to her own with some calories on board.

When I walked in this morning she had a beautiful pillowcase and matching new Linus Project Blanket. The care of people who don’t even know her astounds me. And Sarah finally got to sit in bed with her for a moment. All is returning to right in the world.

When you think about it, if we can all just remember to sleep and breathe that really will get us through most things. Thankfully Catherine seems to be back on track for both. And always an example to me.

Keep flying Butterfly!

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Filed Under: Moments Tagged With: surgery

Photo Op

August 24, 2013 by Ellen Moore Leave a Comment

Catherine still has a tube in her nose so I took a profile shot so you can see how great she looks! When we get rid of the ND tube we can have a full photo shoot so you can really see how well she’s doing. Plan is to start nutrition in a couple of hours assuming she keeps breathing well. Fly Catherine fly!!!

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Filed Under: Matter of Fact Tagged With: surgery

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Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…

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