Redefining Perfect

Let’s do this in order. The lawyer…well, it’s good news, bad news, bad news.

1. Good – She’ll take our case. Specifically, she’s taking K’s. She offered to take Molly’s too because I was “so nice” and she could “Tell what a struggle this has been for us.” She did explain why she thinks they turned it down and pointed out that, as we have seen, at this stage of the game they aren’t too particular about getting up to date info, etc. She said I could do the appeal and come back, or let her take the case now. She’s taking it now. We mutually decided to not to Molly’s because her case was even more muddy and unsure than K’s (yes, K’s is muddy because while she has CF…her case isn’t “serious” at this point so it’s not so cut and dry).

2. Bad – She’s predicting that it could, quite possibly, have to go to court…and that over time it will take us 18-24 months to get anything. 18-24 months…and to top that off…

3. BAD – I shouldn’t get a job. Financially we are borderline for qualifying. If I get a job…we no longer qualify. I’m supposed to call SSI to verify this…but she’s pretty sure, even with a 5 person household we are right there.

So, we have representation and we can only PRAY that SSI takes a better look at our case this time because we have a lawyer…otherwise we have a very long, very poor road ahead of us. BUT, I really liked the lawyer. She was very nice and I could tell that she really felt for us and our case…and that gives me confidence.

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Onto K’s shiner. Yesterday afternoon during the heighths of my pain, K was walking around playing. She was playing by the bookcase (Yes, Jess…the bookcase that hurt their toes)…trying to take the books out (despite my telling her no). Well, she had a spell of weakness, or slipped on her pants (they were a little long), I’m not entirely sure what happpend..but she ened up on her knees…hitting her eye into the corner of the lower bookshelf. Luckily it was the corner, the eye socket, so no internal damage…but this is what it looked like last night:

This morning is our appointment with a lawyer about SSI. Yesterday, through the pain, I gathered up a list of all of the girls specialists and therapists and put them in a spread sheet (Yes, Jess…a SPREAD SHEET). I got together my SSI folder, and every possible thing they could need that my poor little brain could think of.

Now I hope I got everything…and I hope that they really don’t mind me bringing the two monsters…and lastly hope that the nasty hump of my shoulder and K’s shiner don’t make us too unseemly

I will be posting later about the meeting and K’s shiner (with pictures!!)

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.

With the experience I’m currently undergoing I wanted to give some free advice to those considering applying for SSI.

If you have one than more child to apply for…do them one at a time. Applying for two children at the same time (even if their conditions are totally separate) for some reason they get run…TOGETHER…which takes TWICE AS LONG.

I applied for SSI on my girls May 7th. In 90% of cases people hear a yes or no within about 90 days, 120 at the longest. It has now been over 4 months and our cases are STILL PENDING. We are on our last penny with me having been out of work taking care of them, and in danger of losing utitilities and/or our house…and SSI is taking their sweet time. They have sent the girls for every test possible, contacted our doctors and therapists insane amounts of times and still no decision has been made.

Last week we went for the “final” (we hope) evaluation, a speech evaluation, on the 120th day of our application period…at which point the Speech Therapist informed me she had ‘two weeks’ before she had to have her report in. TWO WEEKS! I’m wondering how to feed my kids…and she’s going to take her dear sweet time grading my daughter’s evaluations.

I should have done the one I KNEW could get coverage and waited on the elder. I am pulling my hair out.

So, yes…do them one at a time, or wait a month in between…you’ll wait LESS time that way…I guarantee it.