I just love how many people follow the Bean and her day-to-day life. We're pretty smitten with her, honestly, more and more each day. But it fills us with joy to find others find her just as fascinating, if not inspiring. The true warrior princess...she is a pillar of strength.
Our OT, 'occupational therapist' -- and no, she isn't working to steer Andi onto her career path, came over yesterday for her weekly appointment. She was pretty vocal about Andi's g-tube and its leaking is 'by far, the worst she's ever seen.' She said that it shouldn't do that, and urged me to contact her pediatrician to see if there was anything they can do to fix it. I wrote him today and he has referred us back to the guy, sorry, the surgeon, that installed it. He said he stocks product in his office, and it's possible that he can switch it out for something else. I hope so... it's just such an icky obstacle. Wet outfits, rashes, the entire skin surrounding the button is raw, lotions, split 2x2's to help keep it dry. It's all a disaster. Hopefully, there is a solution.
Andi will have to keep the g-tube until she's taking all her food via mouth, and thriving. I've got her to open her mouth a little to accept the spoon of food, but it's a very small amount she's taking. I've shied away from the bottle, but the feeding specialist wants me to try this different bottle, which I used to have one, but no longer seem to possess. I think I gave it away when I sold my pump, as a bonus purchase. However, Andi should be sitting up and holding her head to accept solids (purees), but she's still rather wobbly. I sit her upright in her car seat to feed, but, honestly, giving her a 'taste' while laying on her contour pad has worked just as well, if not better.
We're working on tummy time, and her OT brought over a wedge for her to work with. We put the boppy pillow on top of this padded wedge and it makes it less of an angle that the Bean has to pick up and hold her head upright. So, it enables her to take smaller steps and get smaller victories quicker. I guess I'm a bit too eager for 'small steps' and 'small victories'... I'm continuing to try to work with her every opportunity I can steal, to get stronger and improve quicker. I figure the more we work at it, the faster we'll see results. The problem seems to be that there aren't nearly enough hours in the day. Well, that I can actually stay awake and be productive!!!
I hope Andi told Santa she wants a g-tube that doesn't leak!! His magic will make everything better! :)ReplyDelete