Kiera says, "Mama!"

One of the benefits of leaving your 2 yr old in a hospital room for a week is that she develops separation anxiety and learns to speak up to get attention. :) Since coming home she has decided to "cry out loud" every time I leave the room, or even appear to be getting ready to leave the room. By "cry out loud," for those of you with non-trached children, this is a BIG deal. She has to get enough pressure behind her to make sound past the trach cuff and ventilator pressure. It's not the volume or duration of a non-trached kid's cry, but it certainly gets noticed when we normally have a silent baby.

Anyway, this need for me to be in the room at all times combined with her speech valve trials with the therapist has inspired her to say, "Maaaa- ma," to get me to come back in the room. It was so sweet to hear(even though it sounds like a whine) that I cried. I thought I had heard it before at the hospital a few times with her cuff still inflated, but coming from her, it sounds kind of like a bleeting sheep, and it was easy to second guess what I heard or chalk it up to just noises made while crying. The therapist and I tested her a few times today with the speech valve on by having me leave the room (I was mixing formula) and then come back when she called, "Mama." She repeated this at least 4 times. Unfortunately for Daddy, the "D" sound is much trickier, so he'll have to wait, I think. The Latin based languages are clearly a maternal conspiracy to gain power over fathers.

In addition, she has been willing to "taste" a little bit of food and drink. Some tricks have been unusual. She likes prunes, expecially since I think she's been uncomfortable pooping since we changed her over to a daytime only feeding schedule (no overnight continuous feeds), and the other night when she seemed uncomfortable, I offered her prunes and said, "They'll help you poop." She seemed to understand the logic of my statement, and now that phrase seems to encourage her to try things. She's been chomping on carrots, but has quite a bite and can break off big pieces but then not know what to do with them, so I will have to DC these for a while even though that's what the hospital feeding clinic recommended. Frankly, I'm having more success going against their recommendations. I just don't think they know Kiera and are treating her like a "typical kid with a trach and oral aversion" rather than adjusting their philospohy to her. So now I need to go buy more prune baby food. Of course, she only eats about a teaspoon in one sitting. Other parents would hardly call this eating, but for Kiera, this is HUGE! She also likes to drink when we sing "Drink, drink, drink" to the tune of "Jingle Bells." On "Elmo's World" on Sesame Street, he always ends the show playing Jingle Bells and singing the topic word to that tune. She LOVES this song, and smiles when I play it on xylophone, etc, so I thought she'd feel comfortable, and it seemed to work. Yeah! Again, drinking only involves about 5-10 cc's (1/6th to 1/3 of an oz) at best. But at least the cup makes it into her mouth. She seems to prefer sippy cups without low flow or spill proof lids, so I have to remove the spill proof valves and monitor her so she doesn't throw it and let it run all over my carpet.

Cheers!
Therese