Monday, June 25, 2012

How are we doing?

Today, I asked the nurse practitioner when we would have been going home if they weren’t being extra cautious with us. She told me it would have been yesterday. Yesterday. Wow. Truthfully, I don’t know that we would have been ready.

The good news is that we are on day 5 of this month long induction phase and everything seems to be going really well. The bad news is that we are on day 5 of this month long induction phase, and Libby is a two-year-old. And she is already bored with her hospital room.

We’ve watched Yo Gabba Gabba! until we’re both so over stimulated we’re both ready to cry. We’ve read countless books. We sing. And we’re able to practice lots of our speech therapy. She has seemed to master using the word yes, which sounds more like sssssssss.

Libby, do you want to watch Yo Gabba Gabba!?
Libby, do you want to sing with Mama?
Libby, do you want to Facetime with Hadley?

No one activity seems to have much staying power, so we’re trying some things. We got one of those ABC mats you can put on the floor, and tried to create a nice sanitary place for her to play with a few of her toys. She quickly realized it was much more fun to throw all of her toys off that designated space and crawl after them on the not-so-sanitary hospital floor while towing her 40-pound pole with her IV behind her. (Yes, the IV that is attached to her port that has been placed in her chest under a layer of her skin.)

We tried to go for a walk in her little wagon, but mind you I had to pull her in the wagon and tow the 40-pound pole around with us. There is a way to secure the wagon onto the wheels of the pole, but every time you hit the slightest bump (never mind getting on and off the elevator) it will come unhinged. We spent most of our time blocking entire hallways or elevators with the pole and the wagon fixed in some sort of inexplicable way in which I could basically get none of the wheels on either the pole nor the wagon to function whatsoever. I started to feel really badly confining groups of people in elevators.

When we did manage to move, Libby proceeded to throw all the toys I let her bring out of the wagon over and over again. I usually didn’t realize something was missing until it was about 50 yards behind us, and so back we’d go to pick it up and set up our blockade, again. Libby thought this game was hilarious, so I guess on the up side I did find something to entertain her.

There was one nice stretch where amazingly she didn’t throw anything out, but I quickly realized it was because she had occupied herself by basically flossing her teeth with her IV tubing, which I’m pretty sure they frown upon.

We finally decided to head back to the room after she managed to knock over her milk and it leaked out the holes in the bottom of the wagon continuously as I wheeled us back in the direction of the room. I’ll be honest with you; I was so embarrassed I didn’t even tell anyone. I just pray no one slipped on it. Needless to say, we spent the rest of the afternoon in our room watching Yo Gabba Gabba!


  1. Hey Ginny! I'm a friend of Brooke and I met you at some of walker and Hadley's parties. I am praying for sweet Libby an your family through all of this.

  2. Ginny,
    Emily just told me about your blog. you have the most precious little girl. know that I am praying for her, for you and your family everyday. and you are right, He always has a plan.

  3. This is the absolute most precious and such a true to nature "Sweet Libby" photo!!! When I think of Libby, I think of love, sweetness, beauty, and most of all God's perfection! To see her sweet little face all lit up with joy, is a reminder to me that God IS answering our prayers for Libby!!! We love y'all so very very much!!!

  4. Hey there, I just saw the link for your blog on Living Life With E's.

    Our son will be 4 in August. He has Ds, heart defect (repaired), and ALL diagnosed back in December 2009. He's in maintenance phase (LONG process to get here, but almost done!!!).

    Anyways, just saw this post and thought I would make sure you knew that your daughter should be able to have therapy services in the hospital. Anytime Anthony was admitted, we'd request that they put the order in for services, and within a day or two, our favorite therapists could come in a few times/week and work with him. Mind you, he wasn't solving complex puzzles, but he was retaining his skills, and he actually was able to learn some new things.

    Even while being miserable. And, the therapists know when to take it easy, but still work with him.

    1. Hi, Sarah!
      Thank you so much for contacting me. It means the world. I am thrilled to hear your son is in the maintenance phase-Praise God!
      I appreciate you letting us know about therapy services. Yes, we are already on it. Such a blessing. Although, for the most part Libby is just sitting and starting. :) Hopefully, something is sinking in!
      Would love to maybe contact you in the future since it sounds like our little ones are very much on the same path.
      Take care!