Fall 2013

Fall 2013

Thursday, June 21, 2012

Update and Thankful Thursday

Just going to take time for a quick post this evening before heading to bed. Maia had a fair day from a therapy standpoint. Her food/fluid intake has decreased further. Discussed with the docs, they are not sure what is going on. I wasn't at the hospital during the "room rounds," but they gave Mark some suggestions for feeding which I had already been working on (going back to pureed foods, alternating the types of foods/fluids she is getting). Although they are planning on discharging Maia tomorrow, apparently they feel it is of enough concern to give her IV fluids overnight. I feel like there is something happening physically when she eats that is creating an aversion for her. Susan - no swallowing or chewing concerns. She is tolerating jello and ice cream at times, but in general just does not want anything. She will take 4-5 bites and then just quit chewing. Fluids had been going well, but now she is fighting them also. This morning when I took the lid off her breakfast tray, Maia actually started crying. She seems to have a fair amount of gas which is being attributed to the fact that she is taking her liquids with a syringe. Medication has made little difference. Although I am eager to get home, I am concerned about the fact that 2 weeks ago, our girl was eating over 75% of her meals and drinking at least 1000cc of fluid/day (the docs minimum recommended fluid intake). I'm hoping that a plan for follow up as an outpatient will be scheduled if nothing can be done before dismissal.

There is much to be thankful for this Thursday.
  • That we are planning to go home tomorrow. It will be so good to sleep in my own bed with Maia in the house. Matthew will be spending a couple of days with my parents so we can settle in. I'm sad that he won't be home with us over the weekend, but don't want him to get lost in the shuffle as we try to figure things out and create a new "norm."
  • Blog friends who offer great comments and suggestions.
    • Danette - Thanks for the ebay recommendation. Will have to check that out!
    • Kate - Your suggestion is so appreciated, I'm not sure why it never occurred to me to contact a patient advocate or patient affairs.
    • All of you who send support to our family.
  • Blog friends who post about things that touch my heart so deeply. Adeye has a great post today responding to someone who asked if she wished her special needs kids were typical. As we face this new "norm" with Maia, I am being forced to reconsider some of my own attitudes. If you have time, I would encourage you to check out Adeye's blog.
  • God's way is perfect. Even though life doesn't always look the way that I think it should, God doesn't make mistakes. And I can choose to rely on Him for strength when I feel like I can't go on or I can choose to try to make it on my own. Easy choice... life is a lot less stressful and chaotic when I stop and focus on my Heavenly Father.
What are YOU thankful for today?


  1. I haven't commented for a while, but I continue to read and follow your blog each day (and pray). I want you to know how much glory you've brought to the Lord through this past month. That's what it's all about, but when things happen like your family has experienced, it can be very hard to make this a reality. Your faith is genuine; as you know, that's what's gotten you this far! You have been an encouragement to me and so many others, and I know you'll understand when I say I praise God for that! I'll be praying for your transition and new norm this weekend. Hugs and kisses to Maia and Matthew (you can take care of Mark yourself!!!!).
    Holly S

  2. Saying prayers today that the transition to home is flawless and brings peace to all of you. Also praying that Maia finds her appetite again, and that her refusal to eat is situational and not a medical issue. At home you will be able to approach her with food at optimal times for her, and offer more variety and surprises. Fruit juice makes nice frozen treats and are not empty calories although at this time I doubt empty calories are an issue.

    Praying for you all often and reminding you that you are Maia's best advocates. If when you are home you feel something is not right, you are probably correct.

    You are not alone. Your team of prayer warriors is standing behind you.

  3. Praying for a smooth transition to home today for Maia and all of you. Another suggestion I have is check out craig's list you might find a good deal on equipment for Maia. Believing for healing for Maia, covering you all in prayer.
    I am thankful for food to eat, our apartment to live in, and our air conditioner, it's hot and humid here. I am thankful for the progress my husband has made physically in the last almost 2years. I am most thankful for my loving Heavenly Father God and my saviour the Lord Jesus Christ without whom I would be a total lost person. I am thankful for my two grandchildren they are the joy of my life.
    Hugs to you all.
    Jacquelene L.


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