Home Program

Big crowd for our Infant Team appointment at the hospital today! Myself and Taylor of course, Mom, Dad & Marny, Taylor's new aide Sharlene, and our three therapists.

Shar started last week as Taylor's new Developmental Aide. She'll come to our Infant Team appointments, like Lana did, to take direction from the therapists for her day-to-day work with Taylor.

I had asked them to put together a Home Program for Shar to follow with Taylor at home. She's just getting to know Taylor and I thought it would be helpful, for both Shar and Taylor, to have a regular routine to get into. I think it will be great!

They worked through the list with us:

• Work on establishing Cause & Effect
• Place a stimulating object (light source, fan, musical toy, vibrating object) next to Taylor
• Turn the object on
• Teach Taylor to attend to object with a physical cue
• hand-over-hand
• show Taylor where to look (physically turn her head)
• show Taylor where to reach or touch (lead her hand to stimulating source)
• Also provide a verbal cue
• say 'look', 'touch', 'listen'
• Multiple attempts, try second and third time of...
• e.g. turn fan on, use hand-over-hand cue of turning Taylor's head towards fan, then using a verbal cue of "look"
• Make sure to put objects in a spot near Taylor that will encourage her to easily turn her head towards, reach, etc. (to prevent her from arching her body)
• Taylor engaging in an object may mean Taylor becoming still, waving her hands or arms, reaching, focusing, turning head toward object, rolling over, making a sound, etc.
• Hamstring Stretch
• Heelcord Stretch
• Long Sitting - back supported, knees extended
• Sitting - between your legs, encourage her to prop arms on your legs
• Tummy - prop on arms/hands, hold head up
• Rolling - consecutively across floor, both directions
• Belly Crawl - help her to shift her arms forward and push herself forward with her thigh or knee, then other side
• Lying to Sitting - help her through the steps moving from side lying, prop on forearm, showing her to push up with arm
• Grasp and Hold - encourage holding various objects, different textures
• Hands and Knees - putting her in a crawling position using a support roll to rock on, can use arm splints to teach her to bear weight through her arms
• Modified Hands and Knees - making above hands and knees position easier by elevating her arms on a cushion or step to decrease the effects of gravity, aim to have hands open, forearm prop is ok initially
• Exercise Ball - push against it while sitting in lap, lying over ball on tummy arms propped and holding head up, when on tummy support her while bringing her back until feet on floor in standing and bearing weight through legs
• Little Room - encourage reach/grasp/touch
• Standing Frame - work up to an hour a day, utilize sensory board, encourage holding toys
• Vocalization - copy sounds she makes to encourage her to interact/imitate
• Describe activities - talk to Taylor in short, simple phrases to describe motor activities (up, down, side to side)

The other thing we talked much about was Taylor's feeding, or shall I say LACK of feeding. This is getting more and more frustrating. The time commitment of trying to get Taylor to take some formula by bottle at each feeding time is HUGE. And most of the time it ends up being dumped into the bag and going through the tube, because she will not drink. To take some of the pressure off over the holidays, we gave up the bottle attempts and just fed her 100% by the NG tube. Now I'm feeling guilty wondering if we're worse off because of it. Taylor will just not drink. The OT thinks that taking a break over Christmas is not enough for Taylor to lose the ability to feed, and I shouldn't feel like I made a mistake in doing that. They suggest continuing to offer the bottle at each feeding time but if she's giving strong refusal cues, to listen to her and not force it, because we don't want to make it a negative experience. Still having a really hard time digesting the whole G-tube option (feeding tube surgically implanted from the abdomen directly into the stomach), but we did discuss the benefits and the fact that it doesn't need to be permanent, and that even if we go that route, we can still work on oral feeding. Up until now I didn't even want to consider this, but after 3 months of absolutely no progress with oral feeding, I think we need to start giving it some thought.

I managed to get this shot of Taylor's beautiful, tubeless face in between tube changes last week. What a beauty she is. My little ray of sunshine.