Haley’s Giggle

Ok, so it only took 3 months to get the assessment company here to reassess haley to approve her multi-weekly phyiscal therapy schedule that was prescribed for us in August. Of course, Haley charmed the pants off of her, showing off her swinging prowress and singing off key very joyfully. But when the PT assessment person saw her walking, she was concerned.  The hitch in her step, in addition to her lack of gait was the concern– it’s not clear if they are a developemental affect or a neurological one.  As such, Haley was immediately approved for more PT.   She still walks on the insides of her feet and toes, and that is exacerbating the situation. The trampoline has helped– especially with her confidence with her own movements as well as muscle tone. But she’s going to need orthotics and a few other therapuetic toys to get her to the next level.

In terms of eating, she hasn’t taken to bacon yet, but I’m not giving up just yet. It would go a long way to get her the right nutrients and calories in a small portion. Of course, if she would eat peanut butter that would also solve alot of the issue. Unfortunately, her aversion to peanut butter is most probably a geneti hand-me-down from her jelly-loving mother.

Haley weighs 23 pounds, 2 pounds more than when she was weighed in August when the feeding tube was put in. This weight gain is almost all due to the feeding tube, because she really hasn’t increased her food intake.  The increase is not enough, but she’s going in the right direction!

She’s due for a trip to new york and meetings with the gastroenterology surgeon and nutrition.  and this post is due for more pictures and footage. soon soon…

we took the month off. no doctor’s appointments. not a single one. no sudden rashes or flare-ups that couldn’t be handled with a course of aggressive topical medicine regimens. Tube feeding regimen seems to be working: it’s four nights of tube feeding, one night off. This gives her a deeper sleep (she’s not awakened by the piercing alarm on the tempermental pump, nor does she require frequent diaper changes due to all the liquid she ingests. PT was replaced sometimes by intense sessions of swinging on the table, attempts at jumping without the trampoline, and now, to her delight, the hokey pokey.  We start again this week, with blood tests, and check-ups, and weigh-ins.

I have secured what I think is Grandma Lilly’s chocolate chip cookie recipe. I haven’t been able to perfect it to the exact likeness, but they are not very sweet, contain no milk, soy or beef. I’m just as hopeful about the cookies as I am about the bacon.

Speaking of which, she has tried bacon approximately once, but it was in a soup. I wanted to make sure she’d like at least the taste first. But more than that, in the even that she is allergic (pork is one of the only food we didn’t test for), i wanted to keep october as drama-free as possible.

more pictures will be posted, almost done with the site updates.

To shoshanna, whose kid is CAMT case #24, and is currently on Day 3, we send all the hugs and giggles in the world, and know that you couldn’t be in better hands.