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?