Tuesday, January 03, 2012

January 3rd 2012: The roller coaster rides into 2012

Things seem to be changing again for Charlotte. Nothing as big or fast as our big scare back in November, but a lots of little things that pile up. After some fairly good and constant days over the holidays she had trouble on Sunday (the 1st). Charlotte had some trouble breathing during the night, just an odd but distinct pattern- one big breath....a really long pause... then a couple of short pant breaths. She slept ok through it.

Usually Charlotte demands a very strict routine in the morning; upon waking she needs to get dressed within about three minutes, then downstairs for breakfast, during breakfast she needs her diaper changed (sometimes her pants again too) then we finish breakfast, then its shower time... yup we have to get un dressed, don't question.... after she's dried off and dressed then its time for a movie, and a Chai tea latte, then we go downstairs to play with her playmobil toys.

Anyways that's always the routine if she is feeling well.... but on the 1st she wasn't and she slept on the couch all day (in her jammies) she didn't want to eat, wouldn't even open her eyes much. Her breathing seemed to be back to normal. She still responded to all our pesky questions and seemed to be awake on and off all day. Dr. Pienaar dropped by said that he didn't like the look of it all. We started increasing her steroids a whole lot and morphine a little to see if that helped. She remained groggy most of the day. Then suddenly at 7:30pm she sat up and asked to get dressed. Then she wanted breakfast food, but wouldn't eat much of anything but chocolate. Then she wanted her movie....and to play downstairs until midnight when we finally shut the party down and told her that she had to go to bed. The next day she was in a foul mood but got up promptly at 8am and seemed to be feeling much better- up and playing and alert all day to least. It was such an odd turn around. We kept up the steroids for a couple of days and will see now if we can bring it back down.

Before Christmas we noticed a new little shake in her hand, an unsteadiness when she is holding something out in front of her. She has a little trouble holding cups steady to drink out of, and zeroing in on little objects to pick up with her fingers. Dr. Pienaar pointed it out and said that that sort of a shake is caused by pressure in her inner part of her brain. It is an indication that things might be changing inside, moving inwards as well as outwards. I haven't mentioned it for awhile but we have seen quite a few changes over the past two months on a bump on the back of her head (I mentioned it a few posts ago) it has grown considerably and sort of went from one little .5" bump to three little bumps, now they have sort of grown together... you can see in the picture above. It does not seem to hurt her at all, but it is a little awkward since she cannot lay with her head square on the pillow. We guess that it is at least partially made up of swelling since it seems to get smaller when she is on these high steroid doses.

Its way past my bedtime and I'm not really sure where I was going with this blog post anymore... must be a sign that its time for me to stop typing! Good night.


  1. Anonymous6:55 PM

    Dr. Pienaar is pretty awesome eh?! he was one of the many who helped our family with the result of our son having autism.

  2. Christy Lund10:22 PM

    Brynn checks on you guys daily- and your never forgotten in our daily prayers. Know we are thinking of you all the time even if we aren't wanting to call and bug you guys! You are amazing parents and I can't imagine how hard it is on you! Just know we are here for you- whatever you need!!! Love ya:)

  3. Delaine6:05 PM

    Your family has been on my mind over the Christmas season. We keep praying for strength for you and Rob , and healing for Charlotte . Thanks for letting us know how she is doing.

  4. Anonymous7:09 PM

    Allison, thank you for finding the time & the energy to update the blog. You & your family are constantly in my heart, so I appreciate any & all news that you share with me. I continue to send love & strength. Susanne

  5. Anonymous8:45 AM

    Letter from Heaven

    To my dearest family some things I'd like to say
    But first of all to let you know that I arrived today,
    I'm writing this from Heaven. Here I shall dwell with God above
    Here, there's no more tears of sadness. Here is just eternal love.
    Please do not be unhappy just because I'm out of sight
    Remember that I am with you every morning, noon and night.
    That day I had to leave you when my life on earth was through
    God picked me up and hugged me and He said "I welcome you,
    It's good to have you back again,
    you were missed while you were gone,
    As for your dearest family, they'll be here later on.
    I need you here badly, you are part of my plan
    There's so much that we have to do to help our mortal man."
    God gave me a fist of things that he wished for me to do
    And foremost on the list was to watch and care for you
    And when you lie in bed at night, the days chores put to flight
    God and I are closest to you . . in the middle of the night.
    When you think of my life on earth and all those loving years
    Because you are only human, they are bound to bring you tears
    But do not be afraid to cry, it does relieve the pain
    Remember there would be no flowers, unless there was some rain.
    1 wish that I could tell you all that God has planned
    If I were to tell you, you wouldn't understand
    But one thing is for certain though my life on earth is o'er
    I'm closer to you now than I ever was before.
    There are many rocky roads ahead of you and many hills to climb
    But together we can do it by taking one day at a time.
    When you're walking down the street and you've got me on your mind
    I'm walking in your footsteps, only half a step behind
    And when it's time for you to go . . from that body to be free
    Remember you're not going . . you're just coming here to me.