Archive for October, 2014

Overachiever (and Other Updates)

Friday, October 31st, 2014

Maria decided to go crazy and lost 3 teeth in one week. Sue pulled out one, which was very loose. The dentist pulled out the one next to it (lower left). The third one, shockingly, I found on the carpet — I didn’t even know it was loose! That one was from the lower right. I hope this means her drooling will be slowing down a bit.

Maria also got on the honor roll again (all A’s and B’s). Unfortunately, I missed the ceremony this time, too much going on at work. We had our parent-teacher conference, which was pretty uneventful.

Unlike her annual IEP (individual education plan) meeting, which was mostly ok, but one individual was somewhat inappriate and nobody called her out on it — not the principal, not the alleged facilitator (who never says a word). One of our home therapists come to the meeting and said in her school if someone had acted like that, the principal would have taken her out in the hall and reprimanded her. Since this was the 2nd IEP meeting (or more) in which someone was not very respectful and nobody ever calls them on it, then I feel that is the culture, which isn’t acceptable to me, so I’m trying to work with them to be more open and less defensive, offensive, etc.

We finally went to Preferred Homecare to get “fitted” for a new wheelchair and a bigger stander. We met with a physical therapist, an ATP (assistive technology professional or seating specialist), and a equipment rep? I’m not actually sure what Chris is, but he sure knows his stuff! The stander fits a person up to 5’6″, so it should last her for several years (unlike the one she has now that’s only 2 years old and she’s already grown out of it). The wheelchair is going to have a purple frame and sparkly purple cushions, so it’s got to be good, right?

Tomorrow is Halloween. Maria is going to be Cleopatra. Manolis isn’t working, so hopefully he can come trick-or-treating with us. It seems to go better when he comes.

Modified Barium Swallow – Nailed it!

Thursday, October 2nd, 2014

Ok, well that’s a bit of exaggeration, but Maria did her barium swallow test this week and didn’t aspirate on any thickness of liquid–even super thin (or whatever it’s called). I was shocked! There wasn’t any “penetration” either (penetration is sorta like the precursor to aspiration, the way I understand it). The liquid kinda hangs in her throat for a few seconds, which can be dangerous if she sucks in breath, then she can aspirate, but since they didn’t see any aspiration, they removed the “NPO” or nothing by mouth order that they had before. woohoo.

Since then, we’ve been feeding her fairly often, and she’s been doing great! Not much choking, good volume intake. Really, I couldn’t be happier! We’re not giving her milk as successfully. Since it’s been so long, I’ve said no more bottle, only sippy or straw cups. We’re experimenting with different thicknesses and cups and thickeners. We’re not letting school feed her yet (which I’m sure they are happy about), but I think she will do fine with it. Whenever I start sending food, I think I’ll just send applesauce at first, since she loves it so much.

So the sucky things this week are I had another migraine. It was pretty bad, lasted 2 days. And I went to an ortho doc because my right wrist has been hurting. I thought it was overuse from typing, texting, mousing, touch-screening, exacerbated by lifting (Maria). I thought the doc was going to pat me on the head and say, “there, there, little girl, just lay off a while and take some ibuprofen”, but noooooo. She said it’s De Quervein’s Tenosynovitis or De Quervein’s Syndrome. Mayo Clinic website says it’s “a painful condition affecting the tendons on the thumb side of your wrist. It will probably hurt every time you turn your wrist, grasp anything or make a fist.” She also said it’s caused by lifting Maria and the typing, etc probably barely affects it. She said I need to either stop lifting Maria, or use the part of my forearm nearer my elbow, further from my wrist, or hire someone to help lift her. What?! And she gave me a brace to wear for at least 2 weeks. And she shot it up with Cortisone, and holy crap did that hurt. But as she was giving me the shot, all I could think of is all the things Maria has been through, so suck it up, and that really helped! (but it still hurt like a mutha!) Oh yea, and if it doesn’t get better, there’s always surgery. Awesome.