dana

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Dana...

Well, we have civilized birds here and they only pooh in designated areas. How about yours? I mean, when you have any?

Heh...

On 2/25/07, rondana@... <rondana@...> wrote:

Oh, You get bird pooh?? Yucky...hehe About those other questions...Only a few times;-~rotflmao!!

-------------- Original message -------------- From: Bipley <Bipley@...>

Dana....

Heh... freezing rain, eh? Gee, I'm so sorry. I still have my windows open for the fresh air.

You know, Daddy always taught me that the only white stuff that falls from the sky is bird pooh. Are you sure it's *really* snow you have there?

I do have a question for you. When you go outside and lick a padlock, is it true that your tongue will stick to it? Does your nose run when it gets cold? Do you get frost on your upper lip when that happens? I haven't been able to find a shovel ANYWHERE in Phoenix. Do they sell them in your part of the world? Is that what you guys use to dig your cars out of various places such as driveways and ditches? I've seen photos of shovels but I just don't recall seeing one. Amazing, I know. What happens to your hair when you go outside while it is still wet? When you go outside, lick your lips, and then laugh, do your lips break?

Heh heh heh..... snort snicker giggle.....

On 2/25/07, rondana@...

<rondana@...> wrote:

Ahha...*Bi.at'.ch*...JUST KIDDING!!! I would love 70* right now!! I did go walk in the SNOW about 4 " of that white stuff!! It's suppose to fall all day then turn to freezing rain tonight.Ugg! Guess the kids will be out of school and building snowmen again!! It is really beautiful on the branches blaa..blaa..blaa. I've seen enough already! Just waiting for SPRING!! We just bought a new boat and it is screaming for the bay...BUT there are to many ICE-BURGS..*#$@*..come on spring!

( Hey, that must be someones e-mail..Ha! I'm gonna check it out!) Get a SUNBURN for me will ya?

Dana;-)

-------------- Original message -------------- From: Bipley <

Bipley@...>

Dana...

Snow? SNOW???? Is that the white stuff I hear about that falls from the sky? I wouldn't know since I live in Phoenix. Heh... I have my windows open, the birds are singing, little children are playing, the sun is shining, not a cloud in the sky! However, it's a bit nippy here too, heck... I think it's all the way down to ***70***! LOL

Sorry, couldn't resist. ;o)

On 2/25/07, rondana@...

< rondana@...> wrote:

Hi nne, Well it's 33 degrees today and I woke up to snow!! We ( me & Cayman-lab) are getting ready now to go check out the geese...watch them ice-skate on the bay lol.. When she goes to doggy heaven, she's only 6, we have talked about a second generation labra-doodle. No shedding, looks like a lab with wavy, silky curls! Very friendly & cute as a button! Who knows but we sure enjoy her! I also have 4 cats! The oldest, a black female, will be 19 in April! I don't think there will ever be a replacement for her, poor ol'gal! She is the Queen and all the other animals know it!

Well, snow is calling us..Dana

-------------- Original message -------------- From: nne <marianne_135@

>

Brrr...I got a chill when I read 38 degrees! Hope it warms enough for a walk with the Lab:) My Yellow Lab used to keep me on a regular walking schedule. Now that she's not with us anymore, I'd really like to get another dog, however, we've become quite used to taking off for several days here and there without having to worry about making arrangements. I'm thinking French Bulldogs are really cute, great personalities---I might get one of the Frenchies when the time is right. rondana@... wrote:

It's great that we ONLY have 2 or 3 cookies now and only once in a while! Wheww! I have always been a cookie lover so I limit them greatly and have made homemade cookies only 2 times this past year. The weather here in land has been bitterly cold, ice storms and snow up until this week. We had a day of 50 and 40's most of the week. Today was chilly @ 38. I haven't been out walking in a while. I promised my lab I'd take her to the beach to

..

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Hey ... That's a great idea! A bit of a suntan, nice warm weather! LOL We can all call Dana from the lake and ask her how much snow and ice she got. ;o)

On 2/25/07, ga cr <bgaroo@...> wrote:

Bipley, Its going to be 75 tomorrow maybe instead of all of us going to lunch we should meet at the lake and go swimming. hehehe!!! I really do feel bad for all of you in the cold snow but tell your retired parents to come home they are making our freeways parking lots........

rondana@... wrote:

Ahha...*Bi.at'.ch*...JUST KIDDING!!! I would love 70* right now!! I did go walk in the SNOW about 4 " of that white stuff!! It's suppose to fall all day then turn to freezing rain tonight.Ugg! Guess the kids will be out of school and building snowmen again!! It is really beautiful on the branches blaa..blaa..blaa. I've seen enough already! Just waiting for SPRING!! We just bought a new boat and it is screaming for the bay...BUT there are to many ICE-BURGS..*#$@*..come on spring!

( Hey, that must be someones e-mail..Ha! I'm gonna check it out!) Get a SUNBURN for me will ya?

Dana;-)

-------------- Original message -------------- From: Bipley <Bipley@...>

Dana...

Snow? SNOW???? Is that the white stuff I hear about that falls from the sky? I wouldn't know since I live in Phoenix. Heh... I have my windows open, the birds are singing, little children are playing, the sun is shining, not a cloud in the sky! However, it's a bit nippy here too, heck... I think it's all the way down to ***70***! LOL

Sorry, couldn't resist. ;o)

On 2/25/07, rondana@... <

rondana@...> wrote:

Hi nne, Well it's 33 degrees today and I woke up to snow!! We ( me & Cayman-lab) are getting ready now to go check out the geese...watch them ice-skate on the bay lol.. When she goes to doggy heaven, she's only 6, we have talked about a second generation labra-doodle. No shedding, looks like a lab with wavy, silky curls! Very friendly & cute as a button! Who knows but we sure enjoy her! I also have 4 cats! The oldest, a black female, will be 19 in April! I don't think there will ever be a replacement for her, poor ol'gal! She is the Queen and all the other animals know it!

Well, snow is calling us..Dana

-------------- Original message -------------- From: nne <marianne_135@

>

Brrr...I got a chill when I read 38 degrees! Hope it warms enough for a walk with the Lab:) My Yellow Lab used to keep me on a regular walking schedule. Now that she's not with us anymore, I'd really like to get another dog, however, we've become quite used to taking off for several days here and there without having to worry about making arrangements. I'm thinking French Bulldogs are really cute, great personalities---I might get one of the Frenchies when the time is right. rondana@... wrote:

It's great that we ONLY have 2 or 3 cookies now and only once in a while! Wheww! I have always been a cookie lover so I limit them greatly and have made homemade cookies only 2 times this past year. The weather here in land has been bitterly cold, ice storms and snow up until this week. We had a day of 50 and 40's most of the week. Today was chilly @ 38. I haven't been out walking in a while. I promised my lab I'd take her to the beach to

..

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To be portless....hmmmm, well, this is the first time since November 3rd that I haven't had to deal with any drainage! THAT is exciting, let me tell ya!! May not seem like much but that was a real pain in the * & ^%!! lol I have 1.75ccs of saline in my band. I feel a good bit of restriction because when he took out the port, he realized that it was actually damaged and the saline from previous fills was simply leaking out. So, 1.75 is a big difference for me! I think I will be at goal in no time flat now. I am not able to eat any solids until late evening. But, I am getting my protein in so I'm feeling fine...no complaints! Jennirondana@... wrote: Hi Jenni, Congrat's on your new weight girl! Under 150... a great feeling isn't it?! About the Taxes, I requested a receipt from Nina and claimed it under "medical" expenses. That was all I needed. How's it feel to be "port-less"? Did they leave you filled? Take care..Dana -------------- Original message -------------- From: "giftedtch" <giftedtch > I know, I know. We have waited until the last moment to file our taxes AGAIN this year. And, in case you didn't know? I am married to an accountant! Go figure!It seems I

remember that someone posted a link or an attachment with information or the forms on using our lapband surgery as a tax deduction. Does anyone remember this other than me? If you do, and IF you have access to this file, could you please re-post it for me or send it to my email address? I would appreciate it.Thanks!Jenni Currie

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That's great Jenni! You will be at goal ( or past it;-) soon!! Hope your feeling

100% better!

Take care and keep us updated! Dana

[Guest guest]

>

> I love reading your story on your son especially. Did he start

talking after chelation with ALA or from other supplementation or a

mixture.

Really the only thing chelation did is to allow my son to tolerate

foods and supplements. It was the supplements that caused the

improvements. What my son needed for speech is written here

http://www.danasview.net/issues.htm

>>afraid that they will not get some of the doses because I mix them

in their drink and occasionally they decide to play with their drinks

by spitting them every where instead of drinking.

I mixed ALA into a small amount of peanut butter and honey.

>>And also trying to figure out the absolute best way to treat for yeast.

At my house, biotin and GSE. More ideas here

http://www.danasview.net/yeast.htm

Dana

[Guest guest]

Thank-you...I've only been glued to this computer for the last 3 weeks reading until I'm cross-eyed. I think I'm well prepared for this task ( Getting treatment) because my older child was diagnosed with PDD-NOS ( Autism Spectrum disorder) and Rieger's Syndrome ( another Rare nobody has heard about condition). So the battle started years ago, when was only 2 years old. BTW is doing awesome, and no one can even tell he was like an Autistic child. is a great kid, and we are able to talk about all this stuff, but I don't want to scare her. and I'm afraid to promise her she will get better, when maybe she won't..... I find an example useful when we get upset about a new medicine not working. ( like in the beginning when the Dr. insisted had GERD) Our bodies are like science experiments, and the DRs. don't always know the right combination to treat us and make us better. Sometimes it is a "try and see" and then

we go back and try again. This was helpful because I am trying to get an issue under control and I am now on my third pill trial to see if there is any improvement. So, I think she can see me and she knows , that I am going through a similiar thing with my bodu and my DRs. ( not that I acn even compare the two issues.) I allow her to ask for TUMs or try other things like a bath soak to calm her down. So we have done lots of trial and error , I'm sure like most of the group. Carolyn you are brave, I keep saying if was 20 years old I could at least involve her more in the decision, etc. But I'm sure at any age it is hard to deal with our kids having medical problems. Not that adults have it any easier, just I am responsible for the right or wrong decision, where adults can choose for themselves. I'll keep you posted and thanks again Dana Mills , VirginiaCarolyn

<wooleeacre@...> wrote: you are right on target.... Be strong and advocate.. you can get exactly what you want... go to the top and go to the best! Other resources is parents whose children have had fundo's because of GERD. see www.reflux.org for children. There are alot of good resources here. Good job mom! Carolyn mom of Cameron now myo'd and fundo'd 3 years next

month! "Hakuna Matata"Dana Mills <danamillsverizon (DOT) net> wrote: Hello everyone,I want to thank-you all for the information you have shared with the group. I was abel to read all the case historties and have started reading over 200 emails.My Daughter is 7 years old. Things started in October 2007, where I would make different meals for , or she would eat only a few bites before refusing to eat. She did eat some stuff, we happened to be on vacation,so I really didn't push the subject. i figured we were feeding her too many treats and that was why she wasing eating at mealtimes. has always be a good kid, and able to tell us when she was hungry and ate very well, never a fusy eater.By November we are noticing a weight loss of about 24 pounds. One morning she

almost faints at the breakfast table. I lie her down, she does faint. We follow up with the peditrician that morning.she orders:EKGblood workeye exam ( she wears glasses, make sure she has the correct RX)EKG comes back irregular we are advised to go to the nearset ER for heart monitoring. WEll that was a long day.needless to say probably had low blood sugar.December 2007. WEight loss is larger, we are close to 8 pounds underweight and eating is worse. Luckily we stumble onto soups.Dec 26,2007 we see our first GI. given prevacid. No suggestins on diet though.Jan 2, 2008. Upper GI series. Radilogist notes "early Achalasia"10 pounds lost total.WE went to GI again, refuses to accept Achalasia as a DX. and even goes so far as to tell our Peditericain" don't bother looking up "A" because there is no way has that".So, we go along with that. we get an ENDoscopy, reveals

nothing.allergy testing, doneswollow function test.the swollow function tests uses food like mashed potatoes, cookies applesauce, I made my own knowing if the food was too thick would vomit, or stop eating. I asked the radiologist after he was done lookinG at the top part of the "e"" hey can we peek down below to see what is going on down therer?"He did, and he even took pictures and noted the food "hanging there".That was the day I singed up for a second opinion!!!!!!I was MAD!!!!!!Anyways, the second opinion was an adult GI, so I also got a third OPinion through CNMC in DC....BTW they are really good with kids!!!!GI #3 was able to say she had "A' with 99% cetainty and wanted to do a Upper GI series to make sure. We were able to get in another upper GI series hours after our GI apt. the radiologist was able see ....YES it is "A"the Radilogist called the GI on the spot, and

the the GI talked to me over the phone and explained things to me.OHHHH, the barrium was FLAVORED for KIDS My only complaint....the GI wanted to do a ballon Dilation within a week, he did not really offer surgery as an option.knowing that was a big decision...I declined to do more research, and help my husband with the idea of surgery on our 7 year old.Basically postponed making an apt. to get more facts.now we are eating better or "safe foods". maintaining weight 60-62 pounds, not really gaining. we are looking into heller w/ fund procedure. I did not realize that the fundiplaction was not a rare surgery.....the DRs. do this to "fix" reflux. That makes me feel a little better.I am looking into john hopkins Balt. landmass geneeral Boston, MASSI was able to do "cold calls" and leave messages for the Peds. surgeans. Basically I want to know about thier experience...the

numbers. how many they have done?do they do Lapro?do they do fundiplcation?do they do upper GI after procedure?A doc form Mass General called me back yesturday, and wants to do the surgerry...actually likes them...crazy!!!I still want to hear from Hopkins, since it's a lot closer to me. WE live in Virginia.I've seen alot of studies and publishing about Heller in the best treatment when done Laproscopic. that Fundipliaction is still contraversial. and I'm now even finding some studies that say having botox or ballon dialations before the Heller can make the procedure less sucessful...due to scarring... I will have to re-read the article...I'm not sure how big the difference is between the pateints who had nothing done vs the ones who had...it may be a minor amount....don't want to get people upset.anyways thank-you for your time and your support.WE ARE hoping

to have surgery over the summer, and be able to go back to school in the fall. WE may need some " accomadations listed on a 504 plan" for school. I've already touched base with the person who handles 504 plans.I will report back, and let everyone know about our experience, and hope that it will help out other families.Dana Mills , Virginia 4-H Leader extraordinaire! All-Star Advisor to the most awesome kids of Amador County! Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

[Guest guest]

Thanks, I have thought about that....I'm focussed on "getting through the surgery" ( getting over the hump). unfortunately, I kinda neglect other good stuff, you know. -Dana YES IN VA, I think VA is gonna kick me out soon with all the ruckus I cause :)michelle <mcnairmichelle@...> wrote: Hey Dana - I completely understand your frustration and I understand where is also. I was diagnosed at age 15 but had been misdiagnosed at age 12.Aren't you in Va.? Have

you considered having a meet up with another member? Tonia comes to mind becuase she is in Va also and a mom of a kid with A. I cannot tell you how truly amazing it is to meet someone in person who really understands where you are at. It is of value beyond words.It may even help to meet - another kid who's gone through what she's going through now and is on the other side.When is she having her surgery? Where are you going?Keep us posted.- in NC

[Guest guest]

> My dd stares into space when she is with a group of friends. Just

> can't seem to get focused.. They all get annoyed with her and leave

> her in the dust, so to speak. Also when she goes to play the piano...

> its the same song over and over... can't get her to change. She hates

> change. Nothing ever changes!!! Ugh!! Any suggestions?

This sounds similar to my son's OCD symptoms. I eliminated OCD with

anti-virals, B12 [other Bs helped also], and yeast control.

Dana

[Guest guest]

.. Believe me I am trying to become as educated as possible. This is very daunting stuff to get into ones brain. With all the "statistics" you would think there would be better pin point answers. Being a black & white person makes all this more difficult as I can't get my mind around there being no black & white answers.

I am going to see if there is any way we can fit a trip to Brooklin in but it is hard to get away from the farm. )

Dana

[Guest guest]

Dana

Number 1 - Do not apologize for your questions!!!! The purpose of this group is for us to have a place to ask our questions and share what we have learned. The answers to your questions will not only help you, but others who are dealing with the same or similar issues. There are many on this list who know a great deal about CLL and Dr. Furman is wonderful about cruising through the posts and chiming in when appropriate.

Number 2 - Having CLL if you are a black and white person is the pits!!! One of my doctors told me that I read too much, so I worry too much. When I was diagnosed (6 years ago) the literature that I found said that I'd be dead in 5 years. I was so sick that I didn't care if I woke up in the morning, fell and broke a rib crossing my small bedroom, and my kidneys were failing. For the last year all my labs except for those indicating immune status have been very near or completely normal. I still have my kidneys (it was expected that I would need a kidney transplant), and I feel better than I have in 11 years. Like many with CLL, I undoubtedly had it for a very long time. I knew for the 5 years before I was diagnosed that something was very wrong, but was dealing with doctors who ignored even very obvious signs. You will come to accept that shades of gray aren't so bad, especially when the eventual answers come out in your favor, as mine have.

Number 3 You've already done - find a doctor who knows CLL and one who you can communicate with. It seems that everything one learns with CLL brings up more questions. Don't get overwhelmed - deal with the immediate first, while you investigate the answers to the next round. There is a lot of good information available now in the archives of this group and the ACOR list (cll@...) and you can't beat CLL Topics (CLLtopics.org) for straight forward, understandable discussions about just about everything you would want to know.

Being scared is normal as is trying to figure out the whole picture right away. The group is here to help you and my guess is that soon you'll be one of those helping the next group of newcomers. I will hold you in my prayers tomorrow, though I think you are in very good hands with Dr. Byrd.

Pat**************Plan your next getaway with AOL Travel. Check out Today's Hot 5 Travel Deals! (http://pr.atwola.com/promoclk/100000075x1212416248x1200771803/aol?redir=http://travel.aol.com/discount-travel?ncid=emlcntustrav00000001)

[Guest guest]

Pat's mail reminded me of a card put on the tables at a very selective conference I went on CLL who the attendants were all CLL European experts.

The quote says "The only dumb QUESTION is a question you DONT ASK" MacCready, Inventor.

Chonette

[Guest guest]

Chonette .. I have printed off the questions that Karl listed and will be asking them. :-)

We have our first grandchild due in 2 weeks so there will also be a discussion about banking cord blood.

ttyl

Dana

[Guest guest]

Hi Dana,I am 36 years old and have 2 children (2 & 3 years old). I happen to bank both their cord blood. Though my doctor was very happy to hear this I am hesitant to ever plan on using it. I do not feel there is enough known about this disease to safely say that my own children will not need it some day. I think it is a great idea to bank cord blood and even though it does cost about $1700 dollars as well as $125 dollars a year for storage fees it is money well spent. I would recommend ViaCord. PS... I was just diagnosed this year and have a very similar story as you. Fortunately I have a wonderful GP that kept sending me for tests no matter who laughed in our faces. The needle biopsy came back fine as did most of my blood work. The surgeon wanted to blow me off and actually told me

to come back in 6 months to see if the lump was still there (I had had it for 2 years prior to seeing her). MY GP told me to have the lump in my neck taken out. I am glad I listened to him.Best wishes to you.Suzanne - Mahopac, NY From: Wind Spirits Farm <windspiritsfarm@...>Subject: Re: Re: Dana Date: Monday, November 3, 2008, 1:25 PM

Chonette .. I have printed off the questions that Karl listed and will be asking them. :-)

We have our first grandchild due in 2 weeks so there will also be a discussion about banking cord blood.

ttyl

Dana

[Guest guest]

Suzanne ..

Thank you so much for suggesting ViaCord. Our daughter is due the 18th and is at her ob as I type and will be asking all kinds of questions.

I am saddened to see you are such a young age to be dealing with this. Anyway I can possibly further research is my objective at this point so all of us can benefit.

Do you have a specialist to lead your team? I can't stress enough to become affiliated with someone who is at the cutting edge. I have a cyber friend who has CLL/T-Cell and only because of her nagging me non-stop ) did I become deterimend to seek out a specialist which is a discision I will never regret. That friend keeps me on the straight and narrow. LOL

Dana

[Guest guest]

not Dana...have you tried chromium picolinate?

wishing you the best, elizabeth

>

> What would help the even out the effect she gets from Taurine.

> Everytime I give the stuff...she ransacks the kitchen for something

> sweet. She never craves sweets like that. Thanks for any suggestions.

>

[Guest guest]

>

> What would help the even out the effect she gets from Taurine.

> Everytime I give the stuff...she ransacks the kitchen for something

> sweet. She never craves sweets like that.

Try biotin and chromium.

Dana

[Guest guest]

How did you figure out all the stuff on your site. How long did it take to

recover your children? Are they on residual supplements or diets? I am so

overwhelmed. I just can't see how to get from here to there. Where to start,

what order, how do I afford it all? I'm sorry to sound like a whiner, I am just

so overwhelmed with my own health problems and wanting so bad to help my son.

-Undiagnosed Asperger's Syndrome

Stay at home mom to 3, Wife to

-6-6-02-Autism Spectrum, the light of my life

Katy-11-19-03-undiagnosed genetic syndrome that includes cleft palate-Pierre

Robin Sequence, scoliosis, heart defects, short stature, low muscle tone,

developmental delay, oral defensiveness, g tube fed part time-working on oral

feeding, slightly dysmorphic features, and my joy

J.D-no issues except he is totally in love with mommy, cutest baby in the world

visit my blog http://busiestmommyinamerica.blogspot.com

" If you think my hands are full, you should see my heart! "