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Old 07-30-2010, 10:38 AM
 
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Did you know Hale has a website (as in Hale's lookup for meds and BFed babies)?
http://neonatal.ttuhsc.edu/cgi-bin/d...s&access=guest

There's also a way medical providers can access it so they can post. I am going to keep this at hand in case I decide to take meds for my ADHD.

~ Professor Mama to Gabito (July '07) & Danita (April '10) ~
A PhD = + +
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Old 07-30-2010, 12:26 PM
 
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I love it when babies get diagnosed with conditions they don't meet the diagnostic criteria for.

Mercy also evidently got diagnosed as having "hypoxic/ischemic encephalopathy." IE. Brain damage due to oxygen deprivation. And once again, her clinical course was not remotely consistent with this. Brain damage doesn't reverse itself completely inside of 30 minutes because you put a kid on a diuretic which raises also blood pressure. Sorry!

Freaking morons.

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Old 07-30-2010, 01:21 PM
 
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wow lnf. i can't wait to see my records and i'm wondering if i should get reeves since we left ama... although i really can't believe a persons MEDICAL RECORD is indundated with peoples OPINION like that. do all of them write stuff like that? wow.....i really think its time for PATIENTS to have a say in their medical records ON RECORD (maybe survey or patient addition by law they can send to medical establishments?) whew....stepping away from this now.

sme~ doesn't you saying you don't like labels make you even MORE of a posterchild of mdc? :rofl

aimee~ i really like being labeled a hippie. makes me think of people who are at least HAPPY with their choices...jeeze i Hate being happy right?

aw ivy no need to walk away from the sleeping baby er i mean mdc because you got the lucky draw.

erica i really hope that figureing out the kidney disease helps ease all his other ailments. maybe he is so cranky because it hurts? hugs and i know you guys are struggling so much. j's ssi takes care of the rent all by itself? that's a HUGE monthly burden so i'm glad you are seeing some silver linings.

i will try to add everyones blog when i can. thanks for telling me how to do the privacy.

ETA: check my wall for claire. she is friended on FB for me so you can find her!
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Old 07-30-2010, 01:24 PM
 
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Luckily I just gave up and now have a tougher hide and real friends:P
I love it.

Talking with a friend yesterday about crazy postpartum hormones (she's going on a progesterone supplement to help hers even out) I made the connection that with DD1 i was on the minipill (progesterone only) and didn't have any PPD, but with the other two I didn't bother with the pill and had/have pretty massive mood swings (which spiral into depression). I'm fairly anti-pill, since A) I got pregnant with the first two while on the pill, and B) hormonal birth control has a lot of sideeffects, BUT I'm going to do some investigating. Maybe it's a case of correlation not causation, but it's worth a bit of internet research if nothing else.

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Old 07-30-2010, 01:58 PM
 
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Ericka you and J are in my thoughts!

LNF--Medical records are so revealing! I thought it was strange to see personal notes/opinions in them when I got mine.

AFM, I think I'm getting back on the healthy eating train. My body will stop feeling like crap now. I already feel better from eating only whole foods (well, mostly whole foods) the past day.

I feel like MDC can be too judgmental too. I guess I do some crunchy things like no sposies, EC, co-sleeping, homebirth, nursing my 4 year old... But I'm happy with my choices and I no longer care what others think, or what they do different in comparison for that matter. I never do anything just to fit a label, I do it because it works for us and we like it! When someone (mainly IRL) tries to debate, argue, or says something negative about one of my "extreme" choices I say something positive in return and smile, then walk away.

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Old 07-30-2010, 02:03 PM
 
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Ivy, I've thought about that as well, regarding progesterone and post partum mood. I feel best when I'm on an even keel, and I can imagine that the minipill might do that.

Reading these records, I feel like I'm in a Monty Python episode. So Mercy had encephalopathy, but a completely normal head ultrasound at 2 days old. But clearly brain damage. Mercy is the queen of invisible yet DEADLY conditions! Invisible pneumonia, invisible brain damage. Girlfriend is a witch, I tell you. Word still out on whether or not she is made of wood. Pepper, how much does your lecherous duck weigh? Need to see if Mercy is made out of wood, and therefore floats on the water like a duck, and therefore weighs as much as a duck.

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Old 07-30-2010, 02:08 PM
 
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Ivy, I've thought about that as well, regarding progesterone and post partum mood. I feel best when I'm on an even keel, and I can imagine that the minipill might do that.

Reading these records, I feel like I'm in a Monty Python episode. So Mercy had encephalopathy, but a completely normal head ultrasound at 2 days old. But clearly brain damage. Mercy is the queen of invisible yet DEADLY conditions! Invisible pneumonia, invisible brain damage. Girlfriend is a witch, I tell you. Word still out on whether or not she is made of wood. Pepper, how much does your lecherous duck weigh? Need to see if Mercy is made out of wood, and therefore floats on the water like a duck, and therefore weighs as much as a duck.



So, I think I know the answer to this, but, can anyone just call and request their medical records for any reason? I'm curious to read ours from the birth. Not that anything weird happened, but I'm still curious. Any reason people can think of as to why that would be a bad idea? (assuming it doesn't cost too much)

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Old 07-30-2010, 02:21 PM
 
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Oh I think he weighs around 10 pounds. I got him from this really old duck breeding farmer way way back in the hills. This old man had been breeding Pekins for eating and eggs for 50 years. So he's a pretty big lecherous duck! (This man also had a HUGE male goose that chased my DH. I wanted to buy it for use as a guard dog but DH refused to let it in the car.)

Rhi, in Kentucky the first copy of your records is free. Not sure about elsewhere.

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Old 07-30-2010, 02:23 PM
 
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rhi, they should have an office just handling records . ours was $15 apiece for mine and charlie's, on dvd.... oooohhhh .

good point about the weekly thread. i don't mind the hateful people for myself, but i've gotten in trouble w/ moderators trying to help others out.

apparently since the april 2011 ddc is up, ours could be gone anytime... i'm ready

me+him for 15 yrs, welcomed our little one march 25th, 2010.

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Old 07-30-2010, 02:27 PM
 
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Oh I think he weighs around 10 pounds. I got him from this really old duck breeding farmer way way back in the hills. This old man had been breeding Pekins for eating and eggs for 50 years. So he's a pretty big lecherous duck! (This man also had a HUGE male goose that chased my DH. I wanted to buy it for use as a guard dog but DH refused to let it in the car.)

Rhi, in Kentucky the first copy of your records is free. Not sure about elsewhere.
Hahah. Geese are MEAAAAAAN.

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rhi, they should have an office just handling records . ours was $15 apiece for mine and charlie's, on dvd.... oooohhhh .

good point about the weekly thread. i don't mind the hateful people for myself, but i've gotten in trouble w/ moderators trying to help others out.

apparently since the april 2011 ddc is up, ours could be gone anytime... i'm ready
Cool. I know there are medical records departments from when i worked at united health care and one of my main jobs was calling to get discharge dates on patients (and frequently that came from MR). But I remember all the hoops we had to jump through in order to get the answer sometimes (they didn't like that we were the insurance company and not the patient and they'd throw hipaa stuff at us that wasn't applicable). I think I'll call UNC soon and see how much they charge. It would be really cool to read. I also have been told from my support people that they were getting concerned with L's heart rate, so it would be interesting to read the notes to see how concerned they really were. I wonder if the wrote about how much I needed to poop.

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Old 07-30-2010, 02:29 PM
 
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s ericka. That's so crazy, that your doctor has been keeping so much from you. I hope you can get to the bottom of this soon, and I hope J gains that weight back quickly.

I don't know why you guys can't be crunchy enough for MDC.
I mean, all you have to do is be vegan, don't use formula, homebirth, homeschool, don't vax, don't circ, don't own a TV, don't ever drive a car, don't use bottles, don't own a stroller, don't buy any clothing or food that isn't fair trade and organic, don't use cosmetics, don't use hairspray, never swear, own nothing plastic, live away from civilization in a yurt, use a composting toilet, collect rainwater to drink, and power your computer with a combination of solar panels and a stationary bike, just like me.
Geez, it's not that hard.

In all seriousness, though, I am not feeling great, and I haven't been for a while. I'm feeling fine on the surface, usually smiling, cracking jokes and having fun, but below the surface I am so stressed and frazzled and disappointed in myself and struggling to keep together and just everything.
Blah.

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Old 07-30-2010, 02:30 PM
 
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Rhi: Yes anyone can. You legally have the right to possess your medical records.

We got ours from R's dr. in order to get her social security card (for those on FB YES we are still on that saga...they basically want us to have an immunization card). But anyway, the Dr. wrote "Mother said she gave birth at birth center" and then something insulting about how I had no records. It was funny because he was very nice to us when we were at the office. I'd love to see my ones from the hospital.

Mama to Umberto 12, Camille, 9, Piper 7, Rowena 2, and Jude Therese Prenatal DS diagnosis due December 23.

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Old 07-30-2010, 02:32 PM
 
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I wonder if the wrote about how much I needed to poop.
LOL, i should definitely read mine. i'd love to talk to a dr. sometime about our experience w/ charlie going into the NICU. and i'm sure any notes on my three day labor/delivery stay would be, um, interesting

we actually had our records very easily. i know pepper had a hard time w/ her hospital though. we went right in w/ no appointment, took 15 mins.

me+him for 15 yrs, welcomed our little one march 25th, 2010.

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Old 07-30-2010, 02:35 PM
 
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his SSI is a small amount but any amount helps...my parents agreed to pay my rent until my lease is up and if I am not on my feet by then, then they plan on building a house on their property or adding onto their house..which I think they would just build a house, cause they already have a 4bd and I don't think they could add another 3...we'd butt heads too.
I did get the retro SSI and I have paid all my bills off(phone and cable always a month behind) and bought necessities and a few non-necessities.

I have a bad feeling surrounding all this..things just don't add up. I should be used to those stupid Dr.s not telling me stuff though, just like when they accused me of using drugs? or beating myself? oh well...I just feel like I have to treasure every minute of him more than I already do....

so I am taking the kids camping. me and them. all by ourselves. I got a tent on Walmart.com for $60 and it fits 2 queen beds...so it should fit us. Now I just have to see what I have for camping in storage and go from there. I just want to escape all this. Even if it's 24 hours..just get away from the madness.

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Old 07-30-2010, 02:44 PM
 
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Ericka- I think camping sounds like a great idea!!!

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Old 07-30-2010, 02:44 PM
 
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Pepper, could he weigh... 9 lbs 12 oz? That was Mercy's birth weight. OMG!!!!

At least she's a sorcess easily appeased by boobies.

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Old 07-30-2010, 03:35 PM - Thread Starter
 
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Just got back from Sprout's appointment with a pediatric oral surgeon.

He confirmed that Sprout has a slightly high arched palate and a remaining posterior tongue tie.

There's nothing to be done about the palate, of course. The tongue tie could be fixed, but it would require Sprout to go under general anesthesia and there's no telling how effective it would be in fixing things. (Now, if Sprout was 3 months instead of 4, it could have been an in-office procedure. And I had to wait nearly a month for this appointment.....)

We've opted not to go that route. The pain and frustration I'm dealing with aren't worth the risk and discomfort it would cause Sprout.

The doctor did write a prescription for therapy so that our insurance should cover it. The exercises we got at our first appointment made things worse for a while, though, so I'm not sure how much help it will be.

Basically, I've got to come to terms with this being the end of our treatment road. On the one hand, it's hard knowing there's more I COULD do, but not do it. On the other hand, it's nice to have closure, an endpoint, and not be wondering if I found just one more doctor, would it be fixed.

So.... I'm still working through my feelings. I know we won't do the general, I just have to work on accepting that.

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Old 07-30-2010, 03:40 PM
 
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Jen- I think that's a good decision. We talk so much about weighing risks and benefits. It seems like the risk of general is higher than the risk of just letting things go as they are. Because what is the worst case scenerio with letting things just go? That you give up and go with formula. And I think the risk of formula is lower than the risk of GA

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Old 07-30-2010, 03:45 PM
 
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Jen, you've worked so so hard on this, and you've already given Sprout so much in working through things to this point. I think you're making the right call now.


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Old 07-30-2010, 03:50 PM
 
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Mercy is the queen of invisible yet DEADLY conditions! Invisible pneumonia, invisible brain damage. Girlfriend is a witch, I tell you. Word still out on whether or not she is made of wood. Pepper, how much does your lecherous duck weigh? Need to see if Mercy is made out of wood, and therefore floats on the water like a duck, and therefore weighs as much as a duck.
:

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Old 07-30-2010, 03:58 PM
 
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I requested my medical records from DS's birth and it was awesome. They had a transcript of my entire delivery with 2-5minute updates written by my midwife. I was so busy pushing him out I didnt even realise that half of what had happened had taken place. At one point it said 'Bryan (my DH) is feeling faint, advised to go out for some fresh air'

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Old 07-30-2010, 04:30 PM
 
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sme~ doesn't you saying you don't like labels make you even MORE of a posterchild of mdc? :rofl
Ack, it probably does.

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Hahah. Geese are MEAAAAAAN.
We had this goose in college that guarded the bridge you had to go over to get to the underclass parking lot. OY. People were seriously injured by that stupid goose. He put 2 animal control officers out of commission before they caught him, and he was gone for a week, then MYSTERIOUSLY SHOWED BACK UP. *shudder* I think he's immortal.

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I don't know why you guys can't be crunchy enough for MDC.
I mean, all you have to do is be vegan, don't use formula, homebirth, homeschool, don't vax, don't circ, don't own a TV, don't ever drive a car, don't use bottles, don't own a stroller, don't buy any clothing or food that isn't fair trade and organic, don't use cosmetics, don't use hairspray, never swear, own nothing plastic, live away from civilization in a yurt, use a composting toilet, collect rainwater to drink, and power your computer with a combination of solar panels and a stationary bike, just like me.
Geez, it's not that hard.
Crap, maybe I'm NOT crunchy enough for MDC! We eat meat, have a TV, don't buy organic for everything (just a few things), have Tupperware, 2 cars (one an SUV crossover ), and use bottles and a stroller. I must be terribly mainstream.

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In all seriousness, though, I am not feeling great, and I haven't been for a while. I'm feeling fine on the surface, usually smiling, cracking jokes and having fun, but below the surface I am so stressed and frazzled and disappointed in myself and struggling to keep together and just everything.
Blah.


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Just got back from Sprout's appointment with a pediatric oral surgeon.

He confirmed that Sprout has a slightly high arched palate and a remaining posterior tongue tie.

There's nothing to be done about the palate, of course. The tongue tie could be fixed, but it would require Sprout to go under general anesthesia and there's no telling how effective it would be in fixing things. (Now, if Sprout was 3 months instead of 4, it could have been an in-office procedure. And I had to wait nearly a month for this appointment.....)

We've opted not to go that route. The pain and frustration I'm dealing with aren't worth the risk and discomfort it would cause Sprout.

The doctor did write a prescription for therapy so that our insurance should cover it. The exercises we got at our first appointment made things worse for a while, though, so I'm not sure how much help it will be.

Basically, I've got to come to terms with this being the end of our treatment road. On the one hand, it's hard knowing there's more I COULD do, but not do it. On the other hand, it's nice to have closure, an endpoint, and not be wondering if I found just one more doctor, would it be fixed.

So.... I'm still working through my feelings. I know we won't do the general, I just have to work on accepting that.
DO NOT feel guilty if this is where you decide to stop. You have worked for 4 MONTHS for this kid. That is WAY more than most kids get. I think the average BF rate in the state of PA is 19% by 2mo. You can absolutely pat yourself on the back for all your hard work and go to formula with NO GUILT. If that is your risk/benefit/quality of life decision, go with it and don't look back. *signed, the biggest breastfeeding advocate EVAR*

Ericka.

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Old 07-30-2010, 04:36 PM
 
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I love, love, LOVE our DDC. Only here can you find mamas at varying levels of crunchiness who don't care at all if the other mams are more crunchy, less crunchy, or not labeling themselves crunchy at all. Only here is everyone non-judgmental, and offers advice from the heart. I don't know what I'd do without you guys. s

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Old 07-30-2010, 05:24 PM - Thread Starter
 
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Thanks, you guys. Luckily -- or not, I guess it depends -- we're not in a position where we have to move to formula. Sprout still won't have anything to do with a bottle, a cup, or finger feeding. He still gets it only direct from the source. And his weight gain is fine. So what it really comes down to is my discomfort and my frustration -- and I can push through that to keep him from surgery.

I've definitely seen improvements over these months -- slow, but they're there. Sometimes he can go 15-20 sucks in a row now before breaking back down into drop-drop-drop. A few times he's even fallen asleep while latched on! So hopefully more months of exercising his tongue and growing into his palate will continue to improve things.

LNF, your readings from Mercy's hospital records have pushed DH and I to get serious about getting Sprout's records. DH is going to stay late at work on Monday morning to go to the records department.

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Old 07-30-2010, 05:46 PM
 
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Good luck, Jen!!! For me, it's been really helpful to see what went down, and to see where things could have or should have been done differently.

For example, Mercy's CRP was very high (like, 120.) However, it went *higher* on the antibiotics. This suggests that she should have been placed on a different antibiotic. She wasn't switched, but still improved dramatically, so the antibiotics must not have been having any effect at all. And if antibiotics had no effect? It wasn't a bacterial infection.

It's just dumb, but it also really helps in validating my thoughts and that what I was asking for really was reasonable. Even if she HAD sepsis, studies have shown that early discharge with completing the antibiotics at home is a safe option.

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Old 07-30-2010, 06:22 PM
 
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P+H, I did have trouble getting my records, do you all remember that? OMG. It took two months, they were so incompetent. I hope no one else has so many issues.

Momma to Sweet Rosie 7/06, Lost Baby J 1/09 at 12 weeks pregnant, Spitfire Ada born 4/21/10, and Baby Boy due July/August 2013!
Aspiring urban homesteader, photographer, homeschooling momma! Blog link in my profile. 

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Old 07-30-2010, 08:20 PM
 
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jen~ you're doing a great job bf and you have tremendous strength!

LF~ i know how you feel. it's the same thing i am trying to figure out if i should be on meds, or counseling or just ignore it (ha i'm kidding myself i don't have the time or the want to go to therapy..its just another stress!!!). i am happy and i know i have a great life, great kids etc but i am sad if i really sit down and think about STUFF. i hate it. i try to distract myself with (way to much) tv and i know that me trying to shut out all this underlying turmoil makes me block out the good stuff too. my BF, my kids, my new baby, my school. it just makes me not want to care. it takes so much work. how are you holding up or pushing through it?
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Old 07-30-2010, 08:59 PM
 
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Hallelujah!!! The Midwifery Modernization Act has been SIGNED INTO LAW!!!

Thank you, New York State!


Catholic wife in love.gifwith my husband, mom to superhero.gifx5,  babygirl.gifx2, angel1.gifx6. Birther of babes, baker of bread, and connoisseur of human folly. WINNER OF THE SILVER BIRTH STOOL, APRIL 2010 DDC! Happily hospital birthing with my BFF, Epidural Man.
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Old 07-30-2010, 09:00 PM
 
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That is AWESOME. I hope other states follow in suit!

bedsharing, knitting, toddler-nursing, nerdy, babywearing mama!

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Old 07-30-2010, 09:14 PM
 
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Baby Half Off is giving away a Fuzzi Bunz!
http://babyhalfoff.com/blog/

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