Excuse the dust while I try to get this bloody thing set up. I keep playing with the templates and every time I do, it takes blogger forever to catch up with me…I don’t think it likes all the codes I’m putting into my side bars 😉
ETA: I’m getting really ticked off that my ticker and sidebar codes aren’t appearing on my blog!!! They are all there and accurate…*beats blogger*
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.
***
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!!)
It’s not the kids or the husband…or maybe it is…I don’t know.
It started two or three weeks ago…I slept wrong, woke up with a crick in my neck. Since then it has slowly started to grow…and get worse…to the point of me waking up today, so bad that I sent DH to get bengay and he spent the afternoon rubbing my neck with the stuff. I had to back out of going ot a Halloween party (not terribly upset about that…I dont’ care for costume parties)…and push him out the door to go. Now I sit in quiet (yay for quiet), suffering a bit. Sitting here hurts, so I am keeping the post short.
I may not post at all tomorrow…but I’ll be back Monday for at least a short post!
P.S. At that time I will be posting about something that REALLY gets under my skin (and the related something that I’m a HUGE advocate of – Early Intervention)
So now that we know some of the signs and symptoms of RSS..how does it affect us? How does it affect me, as a parent…and Molly, as a toddler? How can certain symptoms affect your life?
1. Hypoglycemia
Molly had all of these (well, besides the ketones…we never tested for that). When she was about 18 months (a year ago) she suddenly started waking just about every night at 2-3AM…MOANING. I had to feed her every night at 1AM for a very long time to get her to sleep through the night.
2. Lack of interest in eating
This is STILL a sticking point for us. Molly is now a little more interested in eating…but I swear her stomach is the size of a peanut. After just two chicken nuggets, she’s full (that was her lunch today). She will still drink us out of house and home with the milk, though (chocolate only, please!)!!
3. Oral Motor and Speech Delays/Fine and Gross Motor Delays
That’s how we’ve come to have our life affected by this. Of course, on the flip side…some of these delays are enhanced in our case by the Autism. While most RSS children grow beyond these delays to lead ‘normal’ (we really use this term loosely in our house), healthy adult lives…we’re facing a slightly more difficult hurdle.
4. Physical aspects
Currently we have little repercussions for any of this. I know for my DH he faced a myriad of issues because of his appearance (he still doesn’t believe he’s attractive)…and he fears the same for Molly. I have to hope that how we treat the (relatively) minor physical abnormalities she’s facing will help determine how she deals with them. Me, I don’t notice these so much…because she is beautiful and they are rather minor…well, except she appears frighteningly skinny 🙂
5. Precocious Puberty
Yet another thing we aren’t facing currently…she is only 2.5 *lol* I have to admit…I FEAR the day that this happens…especially since we still aren’t sure about the severity of her autism. BUT…I suppose it’s something we’ll deal with soon enough (that is TERRIFYING!!!)
Those are the key ones I can think of now. If I forgot anything please feel free to nudge me and ask…I’ll be sure to add it!!