This entire article is exceedingly true for our family. We haven’t started going to the food pantry yet…but it has been in my thoughts. Wal-Mart reducing it’s prices are about the only thing keeping us (somewhat) afloat right now:
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 😛
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!!
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.
We’ve been asked to get a referral for yet another specialist for K. This time for an orthopaedist.
Today we had PT for K. During the session, I don’t know why I thought of it, but I grabbed my cell phone. I showed her a video I’d taken about two weeks ago of my girls. In it, you see many of K’s issues presented rather boldly. She places her left foot poorly and falls to the ground. She struggles to get up because her left leg is in the air and she doesn’t have the strength to get the leverage. When she does get up she walks to the camera, and then away…and you see her ‘drunken sailor’ gait and how she doesn’t walk in a straight line. At the very end, you see her chase M right up until she stops short before walking on a blanket (an uneven surface).
I found out how good I’ve become at detecting her issues because without a word from me, the PT commented on everything I saw in the video. She became really concerned. We started talking about the issues that she wasn’t resolving, and how she’s smart enough to learn what hurts/makes her work enough to refuse to do it when she sees the toy again…but she can’t seem to pick up on things like proper distance to an edge of a step, or stepping down without turning her foot in, or judging proper step distance.
She has reccommended a vision check. We don’t think there are any issues there, but we want to rule out poor depth perception as a cause for a few of her issues.
Then she reccommended the orthopaedist. She said that he “may” say that it’s solely a strength issue and tell us to continue with the strengthening exercises. BUT, that he may reccommend braces. We’ve expected, and feared, this. All we can do now is make the appointment and hope for the best…but I can’t tell you how I’ve worried about having to make this call. More so than I was concerned about the neurologist.
And honestly…this is the first illness in the house, beyond allergies, since K’s diagnosis. As the first official illness…and one that could translate into lung issues…I am admittedly a bit freaked out. Eventually it will become old hat…but I’m avoiding my own daughter in concern for her developing a cough. Every time I go near her, I use the hand sanitizer first…but I can’t use that on my face. I’m one step away from getting a mask from the garage so I don’t spread it when I pick her up…she’s such a snuggly, kissy thing…
So today I do battle with my own fears on top of the cold. I don’t want her sick…but I know it’s unavoidable in most cases. I’ll take my precautions and hope that it’s enough.
I’m thinking of getting hand sanitizer to place all over the house…getting us in the habit of using it all the time…but then I worry aobut using it ‘too much’. Catch-22’s here we come.