Skyler

  • No Drama

    It’s amazing how when the drama in your life slows down, so does your website traffic! Skyler keeps showing us her “new” personalities. I can’t believe how much she smiles and laughs now. We thought she was happy before, but we had no idea! It’s so easy to get a big smile and giggles. She’s…

  • Getting caught up

    So this is my third post today, but all in all it averages out for posting once a day since we’ve been home, right? I’ve just been too busy playing and sleeping, oh and feeding our little Pigster. It’s wonderful that she’s eating so much! I love her enthusiasm now too. She sees her bottle…

  • Small Stranger

    I think the fortune cookie predicted pretty well. We’ve been home for three days now and Skyler has definitely been different! Mostly, she’s wonderful. She’s so much easier to get smiles and laughs out of than ever before. She’s constantly kicking her legs and reaching for things. There is just a lot more energy in…

  • Free at last!

    We are home! Skyler and Ronnie made it home with no problems and got settled right in. I, on the other hand, just didn’t quite get enough of the Children’s Mercy experience. On the way home I went to our local CVS to fill her half dozen prescriptions. Apparently, they didn’t carry those medications in…

  • Mama, I’m comin’ home!

    Wheeeeeeeeeeeeeeeeeeee!!!!!! It’s official! Skyler gets to come home today! The cardiology team just came in and went over everything with us and said they would get all her stuff together for us (paperwork, prescriptions, etc.) and we should be able to head out as soon as I finish my CPR class this afternoon. My heart…

  • I can’t believe my ears!

    Our social worker came in this morning to discuss with me the possibility of Skyler going home tomorrow! She said the cardiac team is inclined to think that Skyler will have much faster and better recovery in the comforts of home than here at the hospital. All her medications are oral now, so we can…

  • Just a reminder

    There are so many things that have hit my five senses in the passed few weeks, it’s easy to start to feel a bit numb, and just adjust. We are going on the sixteenth day of Skyler’s hospitalization, and while so much of it is a blur, there are several things that I’ve learned or…

  • Room upgrade!

    We finally made it out of PICU! I arrived this morning to hear Skyler screaming while her nurse was searching for a good vein to start a new IV. She said in order to move to another floor, we had to remove her arterial IV (the one she was receiving meds through but had been…

  • Matters of the heart

    The result of Skyler’s sonogram this morning is maybe improved. Apparently, they are measuring a certain percentage that is the result of some measurements they can make on stuff in her heart. Since her heart will remain enlarged for a matter of months, the measurements they make tend to skew the results. So her percentage…

  • Too smart for her own good

    Last night Skyler decided to go ahead and pull her feeding tube out of her nose. She was laying quietly and we heard a little cough. Ronnie peeked at her and found her with the tube in her hand and she looked pretty happy to have absolutely nothing attached to her face. Too bad she…