Fall 2013

Fall 2013

Sunday, June 17, 2012

Quiet day and a couple of specific prayer requests

Our day was fairly uneventful. Maia and I had a slow start to the morning. She slept well until about 6am and woke up uncomfortable. I asked the nurse to give her some Tylenol which helped and Maia fell asleep for a little while longer. I woke her up a little after 8am and by the time we got morning cares and breakfast done, it was after 10am. Nana and Papa came to visit. Then, Mark and Matthew arrived as well. Nana and I took the kids to the play room. This wasn't an option before because Maia was on isolation (and therefore, Matthew couldn't go either). Matthew really enjoyed playing with all the toys. And Maia had fun knocking blocks over until the occupational therapist came to work with her. It's been a couple of days since this therapist has seen Maia. She noted that her involuntary movements seem to be slightly improved and I think she's right. Neurosurgery dropped by, nothing new from their perspective.

I did finally remember to ask a question that I've wondered about for a couple of weeks. Maia was talking up until the subdural drains were removed from her head. That was the last time we heard any words. I asked Dr. K if removing the drains could have caused Maia to lose her speech. He said that he didn't think so, that it was more likely related to the changes in cerebral pressure when the drains were removed. I have to admit, I'm somewhat cynical... but, why did she suddenly lose her ability to talk when things were supposed to be getting better?

We spent the afternoon together as a family which was nice. The kids both started to get cranky (in their own ways) and I was ready for a break, too. Matthew and I came home for the evening. We had some quality time, including watching Phineas and Ferb, eating corn muffins (his favorite), and putting on Spiderman tattos. He's asleep and I'm heading for bed shortly.

I do have a couple of specific prayer requests.

  • Maia's food and fluid intake - For a girl that used to LOVE her food (remember the syrup drinking incident??), she just is not eating well. Fluids have always been a challenge and over the past couple of days, Maia is not getting enough fluid either. Please pray that this improves. Although the feeding tube (NJ) is out, I'm a little concerned that if her intake doesn't improve, docs may discuss need for a long term feeding tube. 
  • Therapy - as I posted about previously, please pray that Maia starts to make some significant progress with therapy now that the shunt has been repositioned and is hopefully working properly. 
  • Me - the adrenaline rush of the past month is wearing off and I'm feeling a bit beat up and worn down. Please pray that God will renew and refresh me for the journey ahead. 
Hope you all had a wonderful Sunday!!!


  1. Praying for those requests and more..for God's perfect healing to happen in Maia's brain and body. For God's sweet comfort and rest to come into your and Mark's bodies and hearts. Thinking of Mark today...such a good dad and husband. Much love for this Sunday, dear friends. Give Miss Maia and Mr. Matthew hellos from California.

  2. Sending prayers and positive thoughts your way! I am sure you are tired.....it has been such a long road. Stay strong and make sure you take care of yourself too. LIke they say on the plane....put your oxygen mask on before assisting others........

  3. My prayers have been constant throughout and will remain constant for Maia as long as needed! I ALWAYS have had y'all in my prayers BEFORE this... and you will remain in my prayers AFTER this. God is watching over all of us and WILL continue to give you and all of us strength and reassurance that He is listening to all of our prayers. I hope everyone in your family gets a good nights' sleep and will awaken tomorrow with better news about Maia's progress! I love y'all VERY MUCH and that will never change... stay strong and remember that God is Great and Prayers ARE Powerful!!! <3 <3 <3 <3 :)

  4. A slow day sounds like the kind of day you needed after all the stressfull ones you have had. Maia knocking over blocks sounds like an improvement to me, I think it's something. Will be praying for your prayer requests. So glad you had quality time with Matthew and rest time at home for you. Praying for all of you. Hugs to you all.
    Jacquelene L.

  5. Praying for Maia's therapy, eating and drinking. And may the Lord refresh you my friend. I also have to agree with you about her speech. Interesting once the drains were removed she stopped talking. You are a smart woman. We'll be praying for her speech to return.

  6. Glad to hear that you are seeing some changes in Maia's abilities, even though they may seem small. Our experience has been that changes are small at first, but add up over days and build on each other. Any good change is welcome, no matter how small.

    Praying for Maia to want to eat and drink a little more. Is she tired of the same-ness of hospital food? Do they allow you to bring her anything from home? What about drinks of a different temperature, just for a change? We used texture and taste extremes to try to increase awareness. Of course you know whether that is even possible and if/how well she can chew and swallow.

    Praying the therapists can engage Maia enough to help her make measurable improvement. All of her senses are different right now, and unfortunately no one really knows how things seem to her. Praying she finds strength to face all of her challenges.

    You have been inspirational in your strength and resolve. Praying God continues to bless you with that. Now is even harder than at first because it feels lonely. Maia's medical condition seems to have evened out, and when the doctors believe that they feel seem to step back. The therapists need improvement or they are not paid. You and your family are in this for the long run. When the rest step back, you will be there and you will step up as doctor and therapist in addition to parent. Praying you feel rested and strong to enter this chapter of Maia's recovery.

    I belive Maia will continue to recover and will surprise everyone....on her own schedule, and with lots of help from God. You are His Hands and Heart here. He knows what you need. May He Bless you!


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