Hi Everyone,
There are some nights that actually don’t separate one day from the next. Last night was one of them. Corey had a difficult night. Her mouth fired up, she was hungry, she wants to drink (she can’t swallow liquids yet) and she hit that point of being overtired and couldn’t rest long enough to go into a sound sleep. I climbed into bed with her to try to settle her down. When she was a baby, if you stroked her hair or patted her back she’d fall asleep. It worked so well we both fell asleep!
We have another swallow study scheduled for next week. Keep your fingers crossed she passes so we can move forward to her eating. We’ve been giving her samples of food to help her practice. What this means is a portion size that fits on the tip of a spoon (smaller than an M&M) and is the thin consistency of jarred baby food; she only gets about 4-6 spoonfuls with each attempt, certainly not enough to satisfy a hunger pain.
We are watching her calorie intake and believe that her hunger is the direct result of her exercise regime. She’s burning more calories and her weight gain (3 pounds) is the result of muscle mass…there isn’t an ounce of fat on this woman so it’s got to be muscle!
When she passes her swallow study we can begin to introduce more food more frequently. We will then scale down the formula feeding and increase the introduction of liquid thickened food until we can eliminate the formula. This is a gradual process but once she tolerates real food, it will lead to the removal of the feeding tube!
Last night Corey was getting very upset she couldn’t eat or drink. She does not like any fruit at all. She says it tastes sour. So far, she can taste, dissolve and swallow vanilla ice cream, vanilla pudding and mashed potatoes (extra thin consistency). She didn’t want any of this! She has been asking for salty, spicy, pretzels and pasta. That’s a problem b/c she can’t eat those yet. I did give her a pita chip with sea salt to suck on. She loved it but wants to bite it. In my desperation I opened the pantry and tried to find anything I could convert to a puree that had flavor ~ Apple/Cinnamon Oatmeal…a winner. She loved it! I made it with milk and pureed it in the blender.
There is one more piece of good news to share. BIG NEWS; PT continues to work with Corey on raising and lowering her left heel off the matte. We are developing her thigh and hip muscles in order for Corey to lift her leg to carry through the step she needs to walk independently. (I hope the following description gives you an accurate presentation)
Envision Corey lying on the matte, on her back against the wedge. Both her legs resting on the exercise roll wrapped with a pillow. In the resting position, her heel is on the matte. She then tries to lift the heel off the matte in an upward position. At the highest level, it’s about 6-8” off the matte (this takes 6-10 attempts). Yesterday as her heel reached its highest elevated position; she then lifted her knee towards her chest! Gillian did not assist her with this motion. Wouldn’t you know I wasn’t filming yesterday! Not to worry, every great series takes a break in production to bring the audience back for an exciting new episode…this kid really knows the meaning of a cliffhanger!
Breaks over; it’s a new day…back to therapy…xoxo