We have our own family Christmas miracle. Maddie came home from the hospital today!
I have so many more things to say but at this moment I am exhausted. Sleep is long overdue.
In the meantime, know that Maddie is doing pretty well. Her energy is up and she is completely off the IV medication (milrinone). We’re looking forward to a relaxing, simple Christmas together at home.
Thank you! Thank you so much, everyone, for your unending support, your love, and your prayers. Every meal, act of service, babysitting hour, thoughtful word, and especially prayer strengthened us. We’re so grateful to be surounded by such good souls and thankful for the wonderful new friends we continue to meet on our journey.
I promise to update further, but for now, please just watch this video. It sums up the joy our family feels for Maddie’s return perfectly.
So many things to report but I just can’t seem to find the time or the energy. I will say that the more I watch Maddie handle the trial of constantly being woken up for vital checks and prodding, the more I see her suffer through peripheral blood draws while asking for precise descriptions on their procedures to get them straight in her mind, the more I see her eat, drink, get up, and use the bathroom with those painful chest tubes, the more I admire this girl. Not only does she have spirit and fire to keep her going but she has strength and determination. Maddie does not give up.
And that’s why when the nurse asked her if she wanted to go for a walk down the hall this afternoon she not only walked down the corridor but went for the complete loop around the floor. I shouldn’t have been surprised but I was. And so proud, too. It was like watching her take her first serious stroll on her own as a baby, finally independent and ready to explore.
Over dinner tonight, I asked her what was her favorite part of the day. She said it was walking. I couldn’t agree more.
Although we don’t allow our children to spend time mindlessly perusing the internet (that’s our hobby), there have been a few viral videos we’ve exposed them to recently. One internet phenomenon has kept us in awe of his dance moves. In case you don’t scour Google+ as much as Colin does and have missed it, this dubstep version of “Pumped Up Kicks” is pretty incredible (despite the dark lyrics). The kids stand raptly watching and then start grooving.
We all like to rock out when a good tune comes on but Jake feels the music in his bones. He is ready to dance anytime, anywhere.
So when this recognized song starting playing on the radio, he let loose with his new-found moves.
Back in December, we came across this video on the church website. It’s a beautiful, wordless cartoon depiction of an act of charity, taken from the life of the prophet Heber J. Grant. Maddie cannot get enough of watching it:
She asks to see it often. As soon as we pull it up she shouts, “Big one! Big one! Full screen!” because the default small version just isn’t enough for her.
Even though we’ve seen at least 20 times, I still tear up at the end.
Maddie cannot get enough of the alphabet. We sing the song about 10 times a day. This Dr. Seuss book is one of her favorites to read.
Warren’s kindergarten teacher has them sing the alphabet in a slightly different way than most have heard. I like it because it slows down the LMNO sequence by making the break at LMN, with the rest following. At the end they sing, “Now I never will forget how to sing the alphabet!” Maddie loves this version and sings the word “alphabet” with gusto.
She can’t recite the whole alphabet by herself, but she can copy me pretty well.
Kelley brought it to my attention that I forgot to add “What’s THAT?!” or sometimes just “THAT?!” to Maddie’s list of spoken words. I don’t know how that slipped my mind considering it was her first real form of verbal communication.
And while we’re adding to the list, she’s already picked up a few more words since the last post. The count now stands at 26 with the following additions:
Where did it go?: go?
And the best one to-date,
We’d been trying to get her to say Renny for a long time, figuring it was easier to pronounce than “Warren.” To help her understand how the word starts, we’d begin with a few “rr-rr” sounds and then say “Renny.” Seems she now believes that the name must be revved up to say properly.
If I’m not fast enough in the morning, Warren comes to his sister’s call announcing she is done sleeping– anything from adorable babbling sounds to outright piercing shrieks. He almost always asks if he can get Maddie out which often comes in handy since I’m notoriously slow getting ready at that time of the day. I love that he’s anxious to help his sister and that she’s so pleased to see her brother.