Redefining Perfect

I just received this in my mail box and wanted to pass it on! Help raise money for a cure! And get some Holiday shopping done!!

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Dear Friends,

Just in time for the holidays, we’d like to introduce our 65 Roses® Collection Store where you can shop for gifts and—at the same time—support the mission of the Cystic Fibrosis Foundation!

This special collection includes monogrammed blankets, umbrellas, wraps, personalized coffee mugs, and even piggy banks!

Click here to check out the collection and order your items today! Or, you can make a tax-deductible donation to the CF Foundation, if you wish.

As you may know, “65 Roses” is what some children with cystic fibrosis call their disease. But, making it easier to say does not make it easier to live with. You can help change that! By selecting gifts for yourself and loved ones, you will be showing your commitment to helping find a cure for CF.

Thank you for supporting our lifesaving mission. Together, we are adding tomorrows every day to the lives of those with CF.

Sincerely,

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
(800) 347-2345
E-mail: DirectMarketing@cff.org
Web: www.65roses.cff.org/Shop

P.S. To help increase awareness of Shop for a Cure and the important work we do, please feel free to forward this message. Thank you for your commitment.

**To ensure delivery of gifts for the Holidays, please order by November 8th.

Well, K won’t be having OT for a while.

Her OT called me today to cancel today’s session because…she had her baby! She had a little girl on Monday.

While this is wonderful, and I’m very happy for her…this also means that K won’t be having OT for a while. We still haven’t been able to locate a temp OT to fill in until the end of January when this one returns!! So, until EI finds one for us…we’re down one therapy session a week!

About…

Me
My name is Sadie. I’m a 29+2 mother of three. I have a son, DC that is 10 and 2 girls – M (3) and K (2). I was pregnant at my 21st birthday and have been a mom since. I’ve been a dancer, a dance teacher, a dance major…I’ve been a singer, an actress. I’m a craft-o-holic – I sew, knit, crochet, cross-stitch, make jewelry and decorate (my house when I can afford to). I’m currently just a mom and wife…oh, yes…and a writer. Nothing published yet, but I’m searching for an agent for my first novel, and writing my second.

This Blog
I started this blog in 2007 to unravel my travels as a mom to two special needs childrens. I vent, I moan, I whine…I run down my list of doctor’s, try to keep appointments…oh, yes…and still mom my 10 year old and wife my husband. In the meantime I also occassionally remember to educate. In November I began “Terminology Tuesday”, which will be reintroduced in 2008 (Christmas got the better of me). I’m also a HUGE supporter of state Early Intervention Programs. So this blog is a little bit of mishmosh…with a lot of mom and a little education thrown in.

The Fam
My hubby, E, is my biggest supporter. No matter what I take on he supports me in it in every way he possibly can.
DC is my 10 year old science geek. He’s brilliant in math, and not so shabby in science. He dreams of working for NASA. We support him in that dream because he’ll need to be rolling in the big bucks to take care of us in our old age.
M is my 3 year old. She has mild autism and RSS (both diagnoses also include ADHD…and boy is she ever). She’s the most intelligent little girl I’ve ever known and I love that she is learning how to communicate now.
K is my 2 year old. She has been diagnosed with Cystic Fibrosis. She also has severe truncal hypotonia, dysphagia, and sleep apnea. Despite her struggles to simply eat and walk every day…she is a ray of sunshine in our lives. She has the biggest brattiest attitude ever…but she can turn the world on with her smile (yes, I’m being corny and stealing lines…but it’s true).
We have no pets because I have severe allergies to cats and have begun to manifest a dog allergy…but we still wish for a dog…and a bigger house to hold such a creature.

Why?
Simply – I’m an attention hound. I’ll admit it. I love being the center of attention…hence my dancing/singing/acting/writing…
But seriously, I also needed a place to vent my daily struggles. Some days aren’t such a struggle, but some days are. A blog seemed like the perfect place…and it’s become a great fit for me!!

A. Adorable babies. I’ve had 3. I feel blessed because once I hit puberty adorable was not me.
B. Brat. Spoiled. Rotten. Me…and all 3 of my kids.
C. Cats. Love them, love the musical…deathly allergic. Literally, I almost died of an asthma attack because of them.
D. Dogs. Love them…have become allergic, though. Not deathly, but allergic none-the-less. OH yeah…and let’s not forget the whole parents named their dog after me thing…
E. Excema. I had it soo bad when pregnant with Molly…no other time before or since!
F. Fat or “fleshy” (as my DH put it last night). How I feel right now…especially after being weighed at the chiro. I’m as heavy now as I got when I was 9 months preggo with my oldest.
G. Grampa. The rock of my family. The past 10 years haven’t been the same since he’s been gone.
H. Happy. Molly’s latest word. Can’t help myself
I. Ice Pack. My salvation this weekend…Between that and my traction last week, I can move my neck!
J. Juice. Something we don’t have in this house. Girls can’t have such “empty” calories.
K. Kiss. Kennedy. Two things that go hand in hand…she’s kissable and LOVES to give Kisses
L. Lazy. Me. At least how I feel most days.
M. Mail. I have a bit of OCD with the mail. I HAVE to be the one to get it…My neighbor is the same.
N. Novel. One down, still trying to sell it, though.
O. Operation. 10 years ago was my first, an ooferectomy. A year and a half ago my tubal. A year ago my hysterectomy. That’s it. Don’t want ANYMORE.
P. Purple. Jess, you KNEW I had to.
Q. Quilts. My mom’s beautiful quilts. I loves them.
R. Rachael Ray. Yeah, I know…sad. BUT, we’ve had nothing but good luck with quite a few of her recipes lately!!
S. Storms. Plenty of those here in the Hoosier state.
T. Therapy. It is my life.
U. Uniqua. Just what the HELL is that thing on Backyardigans?!
V. Velli. Again, Jess…you knew it. My FAV character running right now (outside of Beth, of course).
W. Wil. *sigh* Poor guy. (*giggle* Jess, you know)
X. X-Rays. Kennedy has had TONS. I swear the child is glowing. And then there’s mine…I just had them done, and Wednesday I get to learn just how big of a curvature there is in my spine.
Y. Yak hair. I actually found a supplier of this once. Yes, really. I wanted to make a real CATS wig. It never happened as money became tight and never loosened again.
Z. Zamboni. Hey, what else the Hell was a Buffalo-born gal supposed to use for this letter??!?!?!

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I did most of this by free association. First word that came to mind with the letter. I didn’t use a meme thing or nothing…just felt like it

1. I’m female (yeah, go figure)
2. Mom of 3
3. Wife to 1
4. I’ve written a novel
5. I’m searching for an agent for said novel
6. The novel is a historical fiction/romance that I’ve been writing off and on for 6 years.
7. I’m addicted to my computer.
8. Seriously, if I’m not on it over the weekend, I go through withdrawals.
9. I used to talk like Elmer Fudd (The waskily wabbit wan wapidly).
10. 4 years of speech therapy corrected it…but it still slips in.
11. I’ve lived under 15 roofs
12. In 5 states
13. Indiana is one state, but I’ve lived here twice.
14. I’m a born and raised Buffalo Bills fan
15. I hate the Colts, Cowboys and Dolphins
16. My son was named for the Denver Bronco’s (he was born superbowl Sunday when they played Green Bay)
17. My dad picked the name
18. I’m also a big hockey fan (SABRES!)…
19. My dad used to get free tickets to the games…
20. My brother and I would fight over who got to go.
21. I’ve been dancing since I was two and a half
22. I started with tap, and eventually got into jazz and ballet.
23. I now hate watching techniqueless dancers
24. I saw CATS on Broadway 11 times.
25. I saw the first tour of CATS when I was 6
26. I auditioned for the CATS tour back in 2000
27. I’ve performed in four community theatre musicals
28. I never thought I could sing (thanks to Mr. Sims)…
29. But got my first vocal lead in my second show ever done.
30. Side Show and Two by Two are now two of my fav musicals…and few people have heard of them.
31. I think I’m one of maybe twenty people that have recognized a line from Side Show in an episode of Will & Grace (When he’s on pain meds)
32. I had a cyst that grew to 5 pounds.
33. It started before I got preggo with my son, and grew through the pregnancy.
34. I forgot about the cyst until a year later when I was having intense pain and preggo symptoms…yet had been celibate for over a year
35. Even my GYN said, “Wow…this sucker is huge”.
36. I had a hysterectomy at 30…6 months after my tubal (pointless procedure anyone?)
37. I’ve never broken a bone (yet…*knocks on wood*)
38. But I’m a HUGE clutz.
39. I’ve sprained my ankle twice (same ankle)
40. Both times I’ve sprained it, I’ve been doing the same thing
41. We have 300+ movies in our house.
42. Only about 50 of them are mine (and that includes series)
43. I’m too crafty for my own good. (that’s where the ADHD comes from)
44. I have done cross-stitch, crochet, knitting, needlework (not my fav), sewing clothes, and jewelry making.
45. I would be thrilled to spend an entire day at JoAnns…with a HUGE budget
46. I’ve got a problem with lying.
47. I always lie about money (but I’m getting better, I swear it)
48. I drive my DH crazy by ‘disappearing’ into my own little word…
49. I believe in ghosts
50. I believe because of experiences I’ve had.
51. I’ve seen ghosts of red-coats (yes, the british…french-indian war time), an indian chief…AND his horse. I also heard the drummers.
52. I’m a sensitive. Seeing or hearing the ghosts is very rare for me. I just know they’re there
53. I’ve read the Little House Books upwards of 30 times
54. 18 of those were before I turned 16
55. I started when I was 3
56. I stole the books from my brother
57. I was reading when I was 3…my dad says I would sit down with the REaders Digest
58. I believe myself to be ambi-lobed…I’m extremely creative, but I’m also math and science smart.
59. I hate tomatoes
60. And mushrooms
61. And onions
62. Onions have NEVER been used in my house (DH and I both hate them)
63. Despite that, I was a vegetable freak as a kid
64. I was a vegetable freak because I couldn’t eat anything else.
65. I was allergic to milk
66. And corn
67. And wheat
68. I outgrew all three allergies…
69. And then I got pregnant…
70. And my dairy allergy returned.
71. Now I can have one glass of milk a day…
72. I’m addicted to junk food
73. I have a permanent retainer
74. Without the retainer, I’d probably lose two of my front teeth because of super short roots
75. My favorite color is purple
76. It used to be yellow (yes, yellow)
77. I can sing most of the Backyardigans tunes from memory.
78. I think Steve (of Blues Clues) is HOT…have you seen him lately?!
79. I like to RPG
80. My fav RPGs have been my X-Men and Buffy…
81. I started RPGing through CATS RP’s
82. Three of my BFF’s ever are people I met online (only one has been met in person).
83. I’m no longer speaking to two of those
84. My BFF is someone I’ve never met
85. That drives my DH crazy
86. I met Dwight Schultz
87. He wasn’t very nice
88. I used to go to Star Trek con’s every year
89. At one of those I saw a Klingon get his face slammed in a bathroom door (not intentionally, the guy was a klutz)
90. I miss the East Coast.
91. I liked living 3 hours from NYC…and 40 miles from the capital
92. I am a republican
93. I am a Christian…but…
94. I’m also Wiccan curious
95. I still cry every time I hear the song “Grampa”
96. And when I read, “I Love You Forever”
97. Hell, I’m just an all around sap
98. All of my kids were ‘oops’ in one way or another
99. I was insane in high school…like stalkerish
100. I was also REALLY stupid
101. But I’d never change anything…because I wouldn’t be where I am today.

I have new commenting rules set up!!

I have now allowed non-blogger members to comment! Those comments will be moderated, but I’ll post any non-flaming, non-spam comments!!!

One thing I am is a huge supporter of Early Intervention (EI). With EI your child can get all the help he or she needs NOW, and in many cases, free. If your child has a significant delay in one area, a little help now can mean a LOT for their future. If it weren’t for EI, Molly wouldn’t be making the progress she is now…she probably would not be considered high-functioning at all. K might not be walking without the exercises we’ve learned, and her weekly PT sessions.

That being said…one of my biggest pet peeves is people who worry about their child’s development, but then sit back and do nothing. The easiest thing you can EVER do is say to your pediatrician, “Hey…I’m a little concerned, can we call EI and have an evaluation?” The WORST that will happen? EI will say, “He/She needs therapy.” You don’t HAVE to do it, but it’s there and available IN YOUR HOME, or IN THEIR DAYCARE!!!! WOW! The best thing that could happen is the (experienced, mind you) therapists will say, “She/He seems to be developing normally…”

So what is the HARM in just checking if you ARE concerned?!?!?! Instead of sitting there fretting…waiting for soothing words from friends and family…Take the step and get an eval!!! It’s painless, your child gets to play while you answer a couple hundred questions…then the therapists play with your kid!! You can always REFUSE therapy if you want!! But at worst, it will be suggested..at best your mind will be put at ease!!

So get off your butt and ask your ped if you’re concerned…don’t lament delays if you aren’t going to do a damn thing about it!

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.

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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!!)