by Sarah | Oct 18, 2007 | Autism
It doesn’t happen often. Most of the time, Molly’s meltdowns consist of her internalizing and curling up on your lap until she feels safe again. Sometimes, though…her meltdowns are ugly and angry and violent. Today was one of those days. She was up and about during her sisters PT session today, which I usually try to avoid for the jealousy issue/mixing therapies. When one child is in therapy, I want the focus on them. But, we were all running a bit behind today, so Molly wasn’t ready to climb back into bed.
Sooo, she was up and about. Then she slowly started going into a meltdown. I sort of saw it coming…but thought we could nip it in the bud by letting her back in the living room to play with her sister. Instead she really started going. Screaming, fighting. So I picked her up to carry her back, get her changed, and put her in bed.
Halfway there, she bit me. Hard. On the boob. She managed to break the skin, but not draw blood. I’m going to have a pretty bruise tonight…and not one I can thank my husband for 😛
by Sarah | Oct 17, 2007 | SSI
Well, we got the second denial today. The one for Molly (as we were expecting it to be). This time, though…all I could do was laugh. They claimed that the medical evidence supported a good rate of growth currently (not a total lie, I suppose)…but then it said that there wasn’t any problem with her communication and that she was 100% intelligible!!! WTF? I don’t know HOW they got that, since she said NOTHING during the Speech Evaluation…and I certainly never said anything like that in response to the questions she asked me!!
I have called a lawyer and have an appointment on the 29th to find out if either case is viable and if they’ll take me on. Keep the fingers crossed!
On another bad note. K had her nutritionist appointment today. She has lost ANOTHER 7 oz (after losing 8oz last appt). That’s one pound in two months. She can’t eat anymore except liquids and baby food…the poor child is starving. I don’t know what they’re going to do.
On that note…in the good realm, the feeding study has been moved UP to Monday thanks to a fluke w/ scheduling!! So, Monday we have our feeding study…hopefully they can tell us SOMETHING!!
by Sarah | Oct 17, 2007 | Uncategorized
We had peace and quiet for two months. Now our calendar is filling again. REgular CF Clinic appointments, well-baby checkups, and the like are always present. Now our appointment with the Orthopaedic is set for Dec. 4th, and K also has a feeding study scheduled for next Thursday.
We did attempt to feed her solid foods again this weekend, just to see if she’s managed to improve again. It was a dismal failure. After ten bites/swallows…she started reacting as she always does. Now we just have to hope that she displays this for the Speech Pathologist(s) at the hospital next week. The OT is making notes of her observations so that I can take them with me as well.
Later today…a post about RSS.
by Sarah | Oct 13, 2007 | SSI
We got one of the two SSI decisions in today’s mail. The government has decided that my daughter is disabled…but not enough to receive assistance. She sees 5 specialists, can’t eat properly, and receives regular speech, physical, and occcupational therapy…but she isn’t disabled enough for us to get assistance for her. I was blown away. I am also broken hearted. I swore that if they turned her down, I would fight it, appeal it…but we can’t afford to wait. It took them five months to come to THIS conclusion. We have gone through every last penny of savings…we do not have the money to go through a lengthy appeals process. They won. I feel completely defeated. I have to go get a job…so that we can pay our bills.
I expect Molly’s decision any day now…and my optimism is gone. The eternal optimist is no longer.
I never thought I would feel this defeated this early on.
by Sarah | Oct 12, 2007 | Uncategorized
K just shocked the you-know-what out of Erik and I tonight!!!
I got them up to eat and she threw a holy fit, refusing her new sippy cup and throwing herself down on the couch, etc. So, Erik took her and put her in bed. The In-laws called and we chatted for a bit, I transferred K’s milk from sippy to bottle…and we got her back up.
She was all smiles, saying before I even got her out of the bedroom, “Daddy…Daddy…DAAD.” (she never says Mama, mind you 😉 ) Anyway…she eats and starts playing…
She starts taking a DVD case off the end table. I tell her no and put it back. She goes to take it again, I take it from her hands and tap them lightly with the case and say “No…Bad.”
Erik pipes up and says, “You’re a bad girl!”
Clear as day, she says, “No I’m not”. We just busted out laughing….and then not three minutes later she walks up to Molly, whom had taken the Dora K had been playing with and in a string of words said, “No *babble* Dora mine…BAD!”
*giggle* She’s amazing, I tell you what!
