Wednesday, November 16, 2011

Moving Day

Mal's Wednesday got an early start. Because she slept through most of Tuesday, and was only up in fits and spurts, we were waiting and ready for her to finally show some signs that she wanted to stay awake for a longer period of time. However, I am not sure I was prepared for her to want to stay up all night with me. Malorie woke up during her nurse's 2 a.m. check, and then stayed awake until about 4:15. I entertained her as best I could by half-singing/half-yawning songs and telling stories that only make sense at 3 a.m. Then, just after I got Mal to close her eyes and fall asleep, Rachel came in out of the parent's lounge to let me go out and get some rest. What she didn't tell me was that the chair she saved for me was next to a guy who had a bad snoring problem and that he was sawing more logs than Paul Bunyan. I think it was quieter in the PICU than out next to Rip Van Obstructed Nostril.

The daylight hours got off to a poor start as Mal's neurosurgeon said that her brain drained about one-third of what it did on Sunday, but it was still draining too much Cerebral Spinal Fluid to allow her to increase the pressure in her head. That means she will have the ventriculostomy tube in for a bit longer than originally hoped. Also, Mal's IV in her right arm infiltrated, which I learned has a medical definition that has nothing to do with commandos repelling out of a helicopter for a black ops mission. Actually, her vein became too saturated with fluids and leaked it all out into her tissues in her arm. Her arm swelled to about three times it's normal size, and she had to get all three of her IVs pulled and then a new one put in on her left forearm.

After our dual setbacks, though, the day got moving in the right direction when Mal passed her swallow study test. She had to demonstrate that she could still swallow fluids and food, which she did with ease and then asked for more. By the end of the day Wednesday she had the best appetite we have seen from her in almost a week. She still is obsessed with Cocoa Puffs though, as she asked for "cock-a-doodle-doos" nonstop after we asked her what she wanted to eat. We succeeded in convincing her to try something else, too, as she saw Rachel's Cheeto and then asked for some of that, too. Cheetos and Cocoa Puffs, not too sure how high in those brain building Omega 3 fatty acids they are, but man do they taste good together.

Also Malorie had her first physical therapy session, which consisted of reaching a grabbing, and lifting her feet from the prone position. Her next big hurdle to attempt tomorrow is to sit up (with help) and then stay sitting upright (without help). If she can do that, then they will have her attempting layups by Friday and hook shots by Saturday. OK, that is a bit of a fabrication, but I am going on less than 3 hours of sleep. The next test on Friday will be sitting upright with her legs dangling, which moves some blood from the head to the feet, and may make her nauseous.

At around 1:30, Mal was allowed to depart the PICU for her own room up on the 12th floor. Immediately when we got there, Rachel began unpacking gifts and planning where to hang cards and pictures for Mal. We called to schedule a visit for Micah during the dinnertime hour, but then Mal had another meltdown when she was awakened from a nap after only ten minutes. She was shouting at the nurse and at both Rachel and me, and very distraught. We got her to calm down and then fall back asleep, but decided to wait another day or so before we bring Micah in so as not to freak him out entirely.

Yet again today I feel compelled to send a massive thanks to everyone who has been rooting and praying and hoping for Malorie. As her parents, we think she's a pretty special child, and we are just now finding out how many other people feel the same. Thanks again, and please keep us in your thoughts and prayers as we await the results of her biopsy and subsequent treatment plan. Also pray for the other parents in the PICU tonight, as I hope they get to move out with an improving kid soon, too.


  1. So glad that there is improvement. I will never have cocoa puffs again, without thinking of Mal. Thanks for the continued updated and know that you guys are definately still in our thoughts and prayers.

  2. Grammie Sharon and I texted some today, and I was so glad to hear Mal had moved to a regular room! I hope and pray it can be calmer, with less constant activity and allow her to have some uninterrupted rest. And for you and Rachel, too - no more Rip VON disturbances.
    I pray the duel setbacks are the last of the setbacks, and that each day will bring nothing but improvements. I'm having a bit of a hard time finding words that adequately convey the depth of my wishing that Mal would just feel great and ready to play. I know that day is coming soon!
    Love and miss you so much, and praying continually. Aunt Carol

  3. she amazes us all, you guys. mal is so stinkin fantastic and fighting so hard. rach- so great to hear your voice yesterday, and billy- i know paul really enjoyed his chat with you as well. continued nonstop thoughts and prayers from us and our extended families, and friends, and and and... we love you.

  4. Congrats on Moving Day! Getting out of intensive is a milestone to celebrate. And I can't wait to read about Mal's first lay-up. She's a winner. Love seeing the picture. Her eyes definitely have a "mess with me, buddy, and I'll plonk you one" look. That's a fighter. Will keep praying.

  5. Greetings. Micah and Mal were in a Parkway ECC class with my daughter, Clara. At class today, I saw M&M's grandmoms and asked about Malorie. They told me her diagnosis. Myself and several other moms were very sad to learn this news. Both of my kids have had to be admitted to Children's for different reasons. I know firsthand what a great hospital it is - Mal is receiving excellent care. Mal and your family are in my thoughts and prayers. If you need anything at all - please don't hesitate to contact me. Christy (

  6. Hi Billy and Rachel! We just got the news of your sweet little girl. We are praying that God continues to sustain you, guide you, and cover you during this time.

    "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future"

    Jeremiah 29:11

    the raftery's

  7. Hey Klug family-
    I am so encouraged by your faith. He is giving you a story to tell about Himself. God is good. I am praying for you guys.
    Elizabeth Ward- parent educator

    Isaiah 45:2-3
    “I will go before you and make the rough places smooth;
    I will shatter the doors of bronze and cut through their iron bars.
    “I will give you the treasures of darkness
    And hidden wealth of secret places,
    So that you may know that it is I,
    The LORD, the God of Israel, who calls you by your name."