Tuesday, October 5, 2010

Of Sign Language, Sippy Cups, and Sufi (OK! So my alliterative skills aren't as good as my Daddy's!)

Madeline Kate is making great progress with her communication skills, thanks in no small part to her incredible speech therapist, Ann, as well as her other therapists and sisters who speak non-stop to her. In the past week, she's been putting two words together using sign language--"Please cup" and "More please." She's also starting to answer "yes" or "no" appropriately. I love that she can get across her desires a little more.
In the feeding-tube arena: We're almost done with it! Madeline finally has 5 or 6 teeth and she can handle almost any table food from soft to semi-firm. She gets most of her fluids through the sippy cup with Thick-It mixed in to thicken it to a consistency she won't aspirate on. We use the tube only for her medicines and water now, and occasionally to get an extra feeding done if we don't want to wake her.
Tomorrow Madeline will visit Dr. Sufi in Indianapolis. Dr. Sufi is her new pulmonologist, and I'm really anxious to see if we can find some answers for her continued need of oxygen. If it's due to the DiGeorge Syndrome? If so, will she outgrow her O2 requirements? Will the kyphosis (sever spine curvature) correction in the spring help her breathing at all? So many questions, and only One Great Physician who has all the answers. We beg for your prayers, that the doctors will have wisdom in dealing with her situation, but more importantly, that His will will be done in her life for the primary purpose of bringing glory to Him.

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