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#121 of 338 Old 11-17-2008, 02:11 PM
 
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Originally Posted by ellasmama2007 View Post
i know what you mean, jane. so far, ive tried to gently offer sippies with eo28 splash for 2 days and then alimentum for 2 days to ella. she pushes them away and wont drink them at all. i dont blame her. i gave her the eo 28 really cold (how she likes her water) and she just cant get past the taste. she tries but gags. it has such a strong artificial grape flavor, which as an adult i could drink, but for a baby it seems way too much. she took 1 sip of the alimentum and that was it! there's no way she could drink it at this point (maybe if she were younger) but it tastes so badly i spit it out into the sink when i tried it.
i was really tempted to just try organic cows milk formula because i eliminated it like 11months ago not really sure if it was a problem at all and never retrialed it. it was green on alcat, but so was everything else she reacts to.
Were you the one that found the rice-based toddler formula at Whole Foods? Have you guys tried that one? I don't blame Ella for not drinking that stuff either... it is so obviously not "food"- it's all chemical and processed.

Or there's the NT homemade formula recipe, which of course contain all sorts of allergens. But I think you can modify it, maybe try raw goat's milk or something... and who knows, maybe she will tolerate it!

Mom to DD1 (10/07) and DD2 (3/11)
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#122 of 338 Old 11-17-2008, 02:53 PM
 
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I found a rice based toddler formula but it wasn't very "beefy". So what I did was add some of this formula to the unflavored elecare to try and get DS to drink it. He'll drink a few sips here and there but generally won't drink a substantial amount of it. I think it doesn't taste bad but I guess he just prefers the real deal.

It worries me b/c if I ever had to stop bfing he'd have to get an NG tube. Sigh.

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#123 of 338 Old 11-17-2008, 03:25 PM
 
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my ds was highly reactive and I did make my own formula with him. He couldn't tolerate anything on the market (not even the "hypoallergenic" (what a joke that is) ones.) Anyhow I did use raw goat's milk amongst other things. I'm not saying it's your answer, but I did do it. I made it for around 9 months.

As best I can recall it was:
raw goat's milk
fresh squeeze carrot juice
flax oil
cod liver oil
spirulina
folic acid
b-12
nutritional yeast
maple syrup

My naturopath, homeopath and a nutritionist worked together on it to make certain it filled all his needs. My ped at the time flipped and gave it to "their" dietician who couldnt' find any fault with it. It worked well for us. I wish I could remember the amounts. I have a basic idea, but not exact.
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#124 of 338 Old 11-17-2008, 04:03 PM
 
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I've seen this simple formula for babies older than a year:

1/2 raw Goat’s milk
1/2 strained raw vegetable juice (½ carrot and ½ celery or dark green leafy lettuce juice (which is vital for the folic acid missing in Goat’s milk)

Personally, I prefer the Weston Price formula which adds probiotics and saturated fats.
http://www.westonaprice.org/children/recipes.html

There is a lot of science and research in their formula:
http://www.westonaprice.org/children/formula-faqs.html
http://www.westonaprice.org/children...-faqs-pt2.html


I believe that fermenting the raw goat's milk even for a short period of 12 hours will make it further digestible and less allergenic. (with kefir grains) It won't be sour at that point. The addition of a bit of maple syrup could make it that much more tasty when given to the child.


I do not recommend this over breastmilk for mamas who are well, however.


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#125 of 338 Old 11-17-2008, 04:04 PM
 
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Check out this thread, "smoothie for health". There are a lot of alternative recipes for delicious and nutritious drinks! http://www.mothering.com/discussions...d.php?t=999781


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#126 of 338 Old 11-17-2008, 04:12 PM
 
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lol at your disclaimer, WuWei! Yes, breastmilk is preferable, but in case you can't homemade formula comes right after donated breastmilk which isn't a reality for food allergic babes.

I am also the smoothie queen and would be happy to lend any support that way!
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#127 of 338 Old 11-17-2008, 04:44 PM
 
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I'm just cya (should be cma) so the thread and post remains, you know. :


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#128 of 338 Old 11-17-2008, 09:02 PM
 
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The main issue is to find Momtezuma Tuatara. She is the most informed resource I know. Hope someone will contact you with her email.

I know how to get in touch with her, PM me.
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#129 of 338 Old 11-17-2008, 09:05 PM
 
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I think you can just find her through her website too.

http://www.beyondconformity.co.nz/
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#130 of 338 Old 11-17-2008, 10:17 PM - Thread Starter
 
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It worries me b/c if I ever had to stop bfing he'd have to get an NG tube. Sigh.
yeah. ive definitely lost sleep over that too. we cant do rice either.

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As best I can recall it was:
raw goat's milk
fresh squeeze carrot juice
flax oil
cod liver oil
spirulina
folic acid
b-12
nutritional yeast
maple syrup
thank you for the ingredient list. it looks great, i wish i could do this! i think im going to give the raw goats milk a try, she just is not drinking the heinous formulas. she cant do carrot, but i usually eat spinach without a problem so i could possibly sub it. she reacts to flax seeds, i have hemp seed oil which i react to but maybe she doesnt. i take clo every day and havent tried giving it to ella yet. id have to ty spirulina, folic and b-12. nut yeast is out - she is moderately allergic to bakers and brewers yeasts on alcat. she reacts to everything sweetener too, that is what makes it really difficult to try to make anything pallitable.

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I've seen this simple formula for babies older than a year:

1/2 raw Goat’s milk
1/2 strained raw vegetable juice (½ carrot and ½ celery or dark green leafy lettuce juice (which is vital for the folic acid missing in Goat’s milk)

Personally, I prefer the Weston Price formula which adds probiotics and saturated fats.
http://www.westonaprice.org/children/recipes.html

There is a lot of science and research in their formula:
http://www.westonaprice.org/children/formula-faqs.html
http://www.westonaprice.org/children...-faqs-pt2.html
i could basically do the goats milk, possibly spinach juice, maybe acerola pwder, clo, lactobacillus and see how that goes.

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I know how to get in touch with her, PM me.
oh great, i really wanted to write her today, but i didnt want to impose.
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#131 of 338 Old 11-17-2008, 10:30 PM
 
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hmmmmm...let's think about this. I need some time to come up with alternatives, but I'd be worried about the oxalates with spinach.
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#132 of 338 Old 11-17-2008, 10:36 PM - Thread Starter
 
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i know, ox are a problem for us. my urine oat was high for them too. unfortunately they are in everything i have left to eat right now. i take the lactobacillus duo and vsl#3 which both claim to aid the body in using up ox and i give dd lacto duo also.
any chance you think i could just try opening a capsule of kirkmans childrens multi vit ( i know, i would normally stay away from the the multis but im so lacking options right now) in the goats milk with a probiotic and clo?
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#133 of 338 Old 11-17-2008, 10:46 PM
 
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does she tolerate goats milk? That would be awesome if she does!

Liberty still can't even figure out a bottle, and my heart is so not in it, so I'm just not really trying...ugh ugh ugh....I'm still just so torn.

Have the Drs said anything new about you lately??

mama to August May (8/06) Liberty Kiana (7/08) and Calliope Rose (6/15/10)
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#134 of 338 Old 11-17-2008, 10:46 PM
 
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What about a folic acid alone supplement?


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#135 of 338 Old 11-17-2008, 11:23 PM - Thread Starter
 
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does she tolerate goats milk? That would be awesome if she does!

Liberty still can't even figure out a bottle, and my heart is so not in it, so I'm just not really trying...ugh ugh ugh....I'm still just so torn.

Have the Drs said anything new about you lately??
idk, i would have to give it a shot. generally, if its healthy for her or me, she doesnt tolerate it.
i feel your pain, mama. i tried to give her the sippy with the crap in it today for a little while in the morning and then just stopped. she just pushes it away and i cant make her get hungry or thirsty. meanwhile, i feel like my milk is really dropping and i dont know why. i guess my body is just really stressed right now.
nothin new with the docs, i asked my ped if he could refer me to a holistically-inclined oncologists/immunologist/hematologist or just anyone that he thought is good and no dice. i think i might just have the damn bone marrow biopsy next monday and get it over with. any mainstream doc that i see is probably going to want one anyway and dh really wants me to see a "regular" doctor. the naturepath that i want to see is an hour away, but i was hoping to try this week and go.
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What about a folic acid alone supplement?
i could try that, do you have any good recommendations?
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#136 of 338 Old 11-18-2008, 11:09 AM
 
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PAUSE. BREATHE. There is plenty of time.

I have a mantra which gives me peace, "All is well. Everything is unfolding toward my highest Self. Out of this situation, only Awareness and Joy will unfold. We are safe."

Just "Hold The Space" for your indecision and be with the ambiguity with trust.





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#137 of 338 Old 11-18-2008, 12:01 PM
 
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lol at your disclaimer, WuWei! Yes, breastmilk is preferable, but in case you can't homemade formula comes right after donated breastmilk which isn't a reality for food allergic babes.

I am also the smoothie queen and would be happy to lend any support that way!
Yes, yes, FF! Please tell us what you do in your smoothies. I think one time you said you do like herbal infusions as a base sometimes? Tell us what kind of things you do in smoothies.
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#138 of 338 Old 11-18-2008, 12:06 PM
 
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i think i might just have the damn bone marrow biopsy next monday and get it over with. any mainstream doc that i see is probably going to want one anyway and dh really wants me to see a "regular" doctor.
I have had some experiences where I felt overwhelmed at what to do and so went the conventional route as a "default". I'm not saying this would be wrong for you to do, but if, in your heart, you are not wanting to go that route, maybe ask if it is urgent or if you can take a few days to sit with your indecisio, as Pat said. Sometimes, when I am having trouble making a decision, I realize I need to give myself permission to be undecided right now. I have to tell myself, "I am not ready to make a decision about this yet." It takes the pressure off.

Didn't you sya they are going to re-test your eos soon? Maybe you can wiat for that before you consent to the biopsy? Just brainstorming here, as I really know absolutely nothing about what you are dealing with. Big hugs to you though, you must take care of yourself too.
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#139 of 338 Old 11-18-2008, 12:14 PM
 
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Yes, yes, FF! Please tell us what you do in your smoothies. I think one time you said you do like herbal infusions as a base sometimes? Tell us what kind of things you do in smoothies.
I posted several in the link Pat provided. Peek over there. But yes, in addition to those I often will make herbal infusions and use them instead of water....thought that might be a bit overwhelming to post over there though!

I use nettles, red raspberry leaf, alfalfa, hibiscus, rose hips, lemon balm, yellow dock etc. Not all together! I rotate throughout the week. Since it's been cold though the teas have been disappearing before they can make it to the smoothie!

Oh, and for anyone with adrenal issues, nettles are a fabulous supplement and lovely mixed with RRL.
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#140 of 338 Old 11-18-2008, 12:17 PM
 
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Ellasmom-
I would highly encourage you to follow your intuition. I would think that a retest and a visit to someone that has a good understanding of the possibilities would come before something as invasive and uncomfortable as a bone marrow biopsy.

You probably aren't going to find a specialist that has a more holistic bent. You may find one that is open minded, but that is different. Specialization in medicine requires a very different thought process than alternative medicine.

Did you by any chance watch that link I posted? That might give you a better idea of what you are dealing with. I really wish you weren't going through this. However, it is a part of your personal journey and I want you to be as empowered as possible through it.
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#141 of 338 Old 11-18-2008, 01:00 PM - Thread Starter
 
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Didn't you sya they are going to re-test your eos soon? Maybe you can wiat for that before you consent to the biopsy? Just brainstorming here, as I really know absolutely nothing about what you are dealing with. Big hugs to you though, you must take care of yourself too.
we are retesting my eos just in time for the biopsy appointment so that if something changes, we can hold off ( because of thanksgiving, we would have to hold off for another week). we also sent specimens for parasite testing last week and this week hoping that those would be at all informative.
its not that i mind the discomfort of the procedure...i just worry about risking bone infection at the site of biopsy. also, i worry about taking any pain management at all because it could go to ella. now that i know how bad things like motrin and even tylenol are for gut health, im guessing im really going to have to just take the local anesthetic and then bite the bullet thereafter.

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I use nettles, red raspberry leaf, alfalfa, hibiscus, rose hips, lemon balm, yellow dock etc. Not all together! I rotate throughout the week. Since it's been cold though the teas have been disappearing before they can make it to the smoothie!

Oh, and for anyone with adrenal issues, nettles are a fabulous supplement and lovely mixed with RRL.
cant you and pat and calm and you other smart, caring ladies come home with me and be my mamas there is so much to learn from you! when i can eat again, my entire outlook on nutrition and health is going to be so different from my previous "healthy" lifestyle.

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You probably aren't going to find a specialist that has a more holistic bent. You may find one that is open minded, but that is different. Specialization in medicine requires a very different thought process than alternative medicine.

Did you by any chance watch that link I posted? That might give you a better idea of what you are dealing with. I really wish you weren't going through this. However, it is a part of your personal journey and I want you to be as empowered as possible through it.
i asked my oncologist about the person from which he wanted my to get a second opinion and he said that that doctor is in agreement about the biopsy as well. he also conferred with a colleague in washington d.c. who is leaning towards parasites, but felt that the biopsy would be important as well (in case the parasite testing comes back negative, which is very likely given the high rate of false negs).
i watched half your link and tried to go back to it yesterday but it wouldnt play. i tried again earlier, same thing. ill try again because i must be doing somehting wrong. it still says that the video is unavailable?
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#142 of 338 Old 11-18-2008, 01:03 PM
 
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I think that's what I'm trying to say. Can you find an ND, either there or over the phone that can give you another opinion. MD's just aren't trained to look at things in more natural ways. IF you don't want to that's fine and I wouldn't judge that....I just want to be clear I'm not saying a second opinion from another MD.
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#143 of 338 Old 11-18-2008, 01:04 PM
 
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i asked my oncologist about the person from which he wanted my to get a second opinion and he said that that doctor is in agreement about the biopsy as well.
I think you need a second opinion on your own. Why would your oncologist ever refer you to someone who disagrees?

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#144 of 338 Old 11-18-2008, 01:25 PM
 
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Ok, there is nothing gained from doing the bone marrow that won't be the same after you have an objective, separate opinion. This doctor told you he was in over his head.

If you want a medical opinion, see an Immunologist. Not a naturopath.

If you want a holistic opinion, see a Naturopath, not an Medically Trained Doctor.

It isn't an either/or. It is Both/And. You don't have to *choose*. They are merely information resources, no more, no less. You are in charge of your decisions.

I want to tell you that when I assisted with a bone marrow biopsy, it was in the hospital. The man had IV Demerol and was screaming from the pain. I am sorry. You can NOT do it without pain medication. I swore then, I would never have that procedure done. I can't predict the future. But, it isn't possible for me to imagine doing it with a local, only.

What reasons and benefit does he specifically believe would be gained from the biopsy?

I have a policy that I always avoid diagnostic procedures which will not provide an alternative treatment course. I don't do them for idle curiosity.

Especially, when there are significant risks of pain and infection. Read the links. Ask your husband to read the links.

The issue is one of immune system function. That is addressed by seeing either someone focused on the pathology of the immune system, an Immunologist. And/or seeing someone focused on the health of the immune system, a Naturopath, Homeopath.

If you decide to do it, you will learn something about yourself. If you decide to wait, you will learn something about yourself. I would absolutely suggest Arnica Montana 200c immediately before and immediately after the biopsy, to help prevent bleeding.

Does doing a procedure which increases your risk of infection, when your immune system function is challenged, make sense? At some benefit point, yes.

What reasons and benefit does he specifically believe would be gained from the biopsy?

Any choice will be the "right" one. As there is no wrong one. It will all work out, exactly as it needs to be. I have always been a weigh-each-and-every-iteration-of-the-decision-making person. So, this is quite a delta from what I learned (as a recovering perfectionist). There is something about accepting that no matter the outcome, All is Well!

We Trust you to know what is best for you.


Sent with peace and healing energy,

Pat

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#145 of 338 Old 11-18-2008, 01:41 PM
 
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Ok, there is nothing gained from doing the bone marrow that won't be the same after you have an objective, separate opinion. This doctor told you he was in over his head.

If you want a medical opinion, see an Immunologist. Not a naturopath.

If you want a holistic opinion, see a Naturopath, not an Medically Trained Doctor.

It isn't an either/or. It is Both/And. You don't have to *choose*. They are merely information resources, no more, no less. You are in charge of your decisions.

I want to tell you that when I assisted with a bone marrow biopsy, it was in the hospital. The man had IV Demerol and was screaming from the pain. I am sorry. You can NOT do it without pain medication. I swore then, I would never have that procedure done. I can't predict the future. But, it isn't possible for me to imagine doing it with a local, only.

What reasons and benefit does he specifically believe would be gained from the biopsy?

I have a policy that I always avoid diagnostic procedures which will not provide an alternative treatment course. I don't do them for idle curiosity.

Especially, when there are significant risks of pain and infection. Read the links. Ask your husband to read the links.

The issue is one of immune system function. That is addressed by seeing either someone focused on the pathology of the immune system, an Immunologist. And/or seeing someone focused on the health of the immune system, a Naturopath, Homeopath.

If you decide to do it, you will learn something about yourself. If you decide to wait, you will learn something about yourself. I would absolutely suggest Arnica Montana 200c immediately before and immediately after the biopsy, to help prevent bleeding.

Does doing a procedure which increases your risk of infection, when your immune system function is challenged, make sense? At some benefit point, yes.

What reasons and benefit does he specifically believe would be gained from the biopsy?

Any choice will be the "right" one. As there is no wrong one. It will all work out, exactly as it needs to be. I have always been a weigh-each-and-every-iteration-of-the-decision-making person. So, this is quite a delta from what I learned (as a recovering perfectionist). There is something about accepting that no matter the outcome, All is Well!

We Trust you to know what is best for you.


Sent with peace and healing energy,

Pat
I'd just like to repeat this post. This is YOUR path. I can tell you what I would and have done. Any one of us can-but what's the point? We aren't in your shoes right now, and we don't know what you are thinking. Anything you choose to do is going to contribute to your life's journey in some way. I have a different perspective than most on health and healing, but that is MY paradigm. It's not my mother's and it's not my friend's. We all have our own paths. Don't be afraid to follow yours, but don't follow any path because of fear. Align yourself completely with every decision you make and it will always be to your highest good.
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We all have our own paths. Don't be afraid to follow yours, but don't follow any path because of fear. Align yourself completely with every decision you make and it will always be to your highest good.

Beautifully said and so true.

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#147 of 338 Old 11-18-2008, 10:27 PM - Thread Starter
 
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thank you all for your concern and encouragement, really and truly you have all given me such strength. i dont take anything that you've said lightly.
i have to work on helping dh to understand that i do need more opinions about this. i understand his position, he has supported me every minute that ive wanted to bf dd and be more natural and organic. he hasnt said boo about all the money ive spent on supps, the holistic ped who is out of network for us, the chiropracter who is out of network, the organic food and the second through seventh opinions that ive gotten for dd. if left to his own devices, he would have wanted dd formula fed like he was.
but i persisted. i wanted to do what i thought was best for her which may have been what was worse for her. i feel like he cant take much more of all of this. he spent last week a total wreck waiting to hear my results. he did not eat and he barely slept. he sobbed his eyes out and he never ever cries. i just thought that, after talking with him about seeing a naturepath, it might be the kinder thing for him if i just stopped always questioning the doctors. he just wants to be like other families, you know?
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#148 of 338 Old 11-18-2008, 10:38 PM
 
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Originally Posted by ellasmama2007 View Post
he just wants to be like other families, you know?
Don't we all...

Mom to DD1 (10/07) and DD2 (3/11)
geek.gif I blog about our life with food allergies and eosinophilic disorders.
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#149 of 338 Old 11-18-2008, 10:56 PM
 
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I totally support any decision you make. Let us know how we can help. :

Pat

I have a blog.
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#150 of 338 Old 11-18-2008, 11:02 PM
 
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I just wanted to give hugs, and let you know I am thinking of you and your family.

caffix.gifChristine: Mama to bouncy.gif  DS 04/17/08  *Infant Stroke Survivor*  Always remembering:  brokenheart.gifbrokenheart.gifbrokenheart.gif

 

Took a 'break' from TTC and look what happened:  2ndtri.gif!!!!    praying.gif  for a healthy, full term baby to be born August 2012!!  Hoping for a vbac.gif!

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