2007-002.jpgHello Reggie,

My name is Eleanor and my daughter was just diagnosed with NF. We noticed her beautiful little “birthmarks” when she was born and her daddy took such pride because his little girl had the same marks as he did in almost the exact places.

dodge-and-sam.jpg

She later developed freckles on her armpits and I would tease her that the freckle fairy must have slipped off her nose and landed there instead dropping her bag full of freckles.

Just this week during a check up for a mole on my son, the dermatologist noticed the cafe au lait spots and turned his attention to my daughter. You can imagine my surprise. These were after all JUST freckles. Unfortunately, the doctor did not break the news very well. I was reeling.

It has been 4 days since we got the news and I have had every emotion imaginable. Every fear…how will she be treated? will people reject her?…how will she deal with it? Is this painful? no grandchildren?

I saw many websites but one that kept calling my attention…was you with your shirts…I loved it. I absolutely loved it! I thought about times when I have passed someone in a store who may have had NF1 and I didn’t know if I should look them in the eye, or smile because I didn’t want them to think I was staring. When I saw your shirts, I felt like you were still in control and that gave me such peace. I know you must have many moments when this is difficult or people reactions are hurtful, but I thank you for being that vehicle of hope and inspiration for others.

We just moved.  I imagine we will be visiting Texas Children’s or other hospitals in your area, maybe we will meet some day. Until then I hope this email finds you well and in good spirits. Please know that you are making a difference in the world.

Best Regards,

Eleanor

Proud parent of child with NF

P.S. Sam is having an MRI and eye check up next week. Please remember us.

164 thoughts on “NEW FRIEND MESSAGE FROM A MOTHER WITH HOPE

  1. Dear Eleanor,

    I first want to say I am happy to get your message. You can always write me direct reggie@reggiebibbs.com You can also write a message on my blog if you would like to pose a question to other people I have met through my website.

    I can tell you about my case and how NF has affect me. None of my spots hurt. They never have. Some of the small bumps are painful if you squeeze them. What I would hope is that anyone that has NF, would not live in fear that their case would be like mine. I do have pain and I do have my ups and down. There are still places I would like to go, but still haven’t gotten the courage to do so. What makes it hard is there are people who believe in me, and they expect me to be strong enough to go anyplace. It’s me not them. I know if I ask my family to go some place with me,I know they would go with me. What would worry me, they would not put up with the stars and comments. Who ever did anything out of the way, my brother and sisters would react with a vengeance. Now it’s different when I’m with a friend. I feel bad for the person I’m with. I think about if I wasn’t with them they wouldn’t have to see this happen. What do you say to the person you are with? Do you act like it didn’t happen? Do you say something totally different so that it won’t be part of the conversation? It’s? a strange situation.

    What I would say to you, is be very supportive and don’t pamper. Go places while they are young. Explain to them when people do things they just don’t know. I also know with out a bought smiling at a person and giving them a nod is a good thing. Saying hello is even better. It always makes me feel good. If you turn away or avoid its hurtful. I think its ok to look someone in their eyes , but with a smile and just say hello, like you would to anyone else.

    What helps me deal with living with NF, is knowing that I’m loved. I believe that God is control and that everything happens for a reason. Having NF has kept me humble. Has NF has help other with NF and others that are not affected with NF. When I get messages like yours I feel so needed. I’m the one that suppose to be giving support, but it seems like I’m the one getting all the support. Support from others that need support as well. I thank you for contacting me. Please keep in contact. I’m not far from Texas Children’s Hospital. I’m a patient at MD ANDERSON, which is next door to Texas Children’s. I would very much like to meet you. Let me know when you are in town. I will do my best to meet with you, if you would like that to happen.

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  2. I can totally understand her concerns as this is how I feel about my son Elijah. You have given her great advice, as always! And she has a found a great source of information and support by finding your blog!

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  3. For Eleanor, You have contacted the right person to chat with, Reggie is a great support in your time of need and for you to know ALL of Reggie’s friends will support any child or adult that has NF. Your children will always have friends because of Reggie. We love Reggie and all that he stands for. Please stay with our little group and you will also get the support you need in your life.
    For Reggie, you never cease to amaze me with you wisdom and I saw your new macro pics and I’m happy to see your getting closer, that being said “closer still” and you’ll have it.

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  4. Good Morning Reggie,
    I had a great day yesterday..much thanks to you. I spent a fair amount of the day on your various websites. I love the myspace layout and the song. Well done. Sam seemed eager to learn more about NF. I told her we would have a long time to figure this out and we don’t need all the information at once. She agreed. I shared the emails you and I sent yesterday and she said what I felt about you…oh, what a nice man.
    We visited some of your “friends” and she seemed really empowered..there just might be a marathon in our future…haha.
    She was interested in developing her own myspace account like some that we saw yesterday. I promise you she said, “mom, i don’t see this as a curse. This is a gift.” Trust me I don’t pretend to take any credit for her amazing outlook. She has always felt like she could make a big difference and she sees this as an opportunity to learn more and share more about NF. I am still waiting for some emotional breakdown typical of a 12 year old but she shows no signs. She is not looking forward to the MRI today so please remember us at 5 o’clock your time.
    –to Jerry:
    I am glad to be in this litle group. Thanks for your support. 🙂

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  5. Eleanor,
    Any friend of Reggie’s is a friend of ours. I’ve know Reggie for close to 20 years now and his commitment to NF awareness and education hasn’t wavered. Nor his TREMENDOUS positive outlook on life. He is exactly what you have described in your notes. Whenever I have a bad day I think, “How would Reggie handle this?” and immediately I have a smile on my face and the trouble goes away. It really does. There are many resources that you can go to for up-to-date medical information but the two I recommend (I am a former board member of the Texas NF Foundation in Dallas) is http://www.ctf.org and the Texas NF Symposium videos at the top right of Reggie’s blog. The videos have the most current info on NF research and treatment. Welcome to the blog, Eleanor. Can’t wait to meet Sam!

    As Reggie would say, “Make it a TREMENDOUS day!”
    Lou “adgiant” Congelio

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  6. Dear Elanor,

    I prayed for you and your daughter this morning. The MRI is only a little loud. It’s not painful at all. You don’t feel anything. They are just taking pictures of the insides. You can ask them if you can be in the room with her. Both of you can think about your new friends in Houston, We will be sending good thoughts your way. DON’T WORRY. You will get the same support I’m getting. Also because the care you are sending out. It will all be returned to you and your daughter.

    You will always have a friend on my blog, and from direct emails.

    Your friend

    Reggie

    ps Make it a tremendous day!

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  7. Eleanor, I forgot to mention that it’s a blessing that your doctor was on the ball enough to realize that Sam had NF. 10 years ago, many doctors were unaware of NF but thanks to the work of the Texas NF Foundation, they made it a priority of educating every doctor in the state of Texas about NF. Knowledge is power and the more you know about what you’re dealing with, the easier it will be to treat it and live a normal life. -Lou

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  8. To Eleanor – I hope the MRI went well. I’m sure she will do just fine! She seems like a really strong person and she has such a great outlook on life. My son will be 4 in a couple of weeks, he was diagnosed with NF1 last fall. We are very lucky that his doctor caught it, because his previous doctor didnt. We are military, so we had just moved. His previous doctor was not concerned when I had mentioned all of his spots when he was a baby and she told us “Oh its nothing to worry about”. At the time he had about 10 spots. At his 3 year checkup last fall, his new doctor noticed them right away and sent us for a neurological consult, and that got the ball rolling. I am so glad that we found someone who cared! So far he has not had any serious complications other than some delays in his gross motor skills, although he is showing early signs of ADHD and has Sensory Defensiveness. With him being so young, he doesnt understand now what is going on, but I can only hope that when he is older he will take the same outlook that your daughter has taken. It is not a curse, it just makes our beautiful children that much more special! I hope that you find some helpful advice here, and you are among a great group of people. Good luck to you and your daughter and your family!

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  9. We got through the MRI and Sam did fine. We should have results tomorrow. Baby steps. Thanks to all for your support I look forward to getting to know each of you better. Hugs all the way around 🙂

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  10. Hello,Reggie and everyone else that can see this comment. I see you all as friends because that is what you all are to me. My mother is Eleanor. The mother full of blessings! Up above I realized my mother had talked to you. Reggie Thank You for your kindness. Kindness is essentional to life and you have provided it for many! Especially to my mom and myself. And that helped us plenty! Today I had my MRI and I was really freaking out! I saw that tiny space and was like…”I might become claustrophobic after this!! But once I got in it was kinda fun.(in a scary unexpected way). I am very proud right now to be commenting on this website! I’m glad I know that I am speaking to Reggie on the other end! Life is good!

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  11. For Samantha,

    I’m so happy that you did well with the MRI. The first time was hard for me too. But you know us guys we have to act like its not a problem. Once you are in the straw,I call it that, because its about as narrow as one. When you are in and you see that its not as bad as you believed it would be, then you are ok. I always get sleepy and just when I’m getting my sleep on, its time to come out. Bummer. LOL.

    Samantha You will see that you will get a lot of support from your NF family and new friends here. I think its a blessing for all of us that you and your mom are a part on this blog. I’m truly being blessed, Knowing the support I get here. When you need to talk to someone you can write here. Let us know what you are feeling? We support you.

    Your Friend

    Reggie

    Make it a tremendous day!

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  12. Eleanor,

    Thank you again for your visit. I send you hugs. I’m sure you are wondering about the MRI results. Please know that I’m praying for you. You will always have someone to talk to. A doctor told my mom there is always hope. I was really young at that time. Remember that. HOPE. You are not alone.

    Your friend

    Reggie

    Make it a tremendous day!

    Reply
  13. Way to go, Samantha! I only fainted twice when I had a MRI. And that was just on the way to the hospital! Send Reggie a photo so he can post on the site. You sound like a very smart young lady!

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  14. Eleanor,

    Good morning,

    I may have hit the wrong button. Please request again to be added to my friends list. I hope to see you there.

    Your friend

    Reggie

    Make it a trendous day!

    Reply
  15. Yes I heard about the article that is the Reader’s Digest. I should get in the mail anytime now. I can’t wait to read it. Hope all is well.

    Make it a tremendous day

    Reggie

    Reply
  16. Hi Elanor,
    I’m Dorothy, Reggie’s mom He is a wonderful person. I’m proud of him because of the inspiring words he has giving so many people, he is the youngest of six,but he acts like the oldest. He is an inspiration to all of his family. I am happy that be has inspired. I think you are a wonderful person, with a warm hart. I hope to meet you and your daughter. Continue to be strong and have faith. Yes I am also your friend.

    Dorothy

    Reply
  17. Hello all! It has been so refreshing to read about this girl and to see her positive attitude about everything. Reggie is right, all things happen for a reason and just think, Samantha, you are a shining light with your happy attitude–you can show others that you are a beautiful soul and that you have joy! I will be praying for you.
    I too, was a young girl once trying to understand why me? My mother has NF as well and she was such a help and inspiration for me growing up, and looking different. Remember that you will be fine, there will be awkward times, but you will be fine, just keep that positive attitude ande I know, you will continue to shine!
    God Bless you!

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  18. Hey Everybody,
    I just heard from the dr. and he said everything on Sam’s MRI looked fine. Thank you all for your prayers and encouragement! I am so glad to have found you.

    Ms. Dorothy, I look forward to meeting you soon. You have helped me to be strong. I know that a mother aches for her children in a different way. Even when we have remarkable children (as we both do) who seem to have a positive attitude it is still hard for a mother to even think of a scraped knee. When I felt low, I looked at your picture and saw how proud you are of Reggie and that always makes me smile. I knew that I could be as strong. Thanks for all you do.

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  19. Eleanor and Sam,
    Thanks for the photo. What a cute family! My daughter is 11 and her name is Elena. I am the biggest wimp when it comes to my daughter!!! She laughs at me because I’m so over-protective and so does my ex. But I can’t help it. One night Elena was staying with me because her Mom was out of town and she got sick and I didn’t know what to do, who to turn to or where to go for help. Luckily a neighbor I called came over with some over the counter children’s medicine and made Elena feel better almost immediately. Thank God for people who can lend a hand with advice and experience. That’s what this blog is all about. Nobody knows what an NF person is feeling better than a fellow NF person. Eleanor and Samantha, it looks like you’re stuck with us now!!! : >)

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  20. Stuck like glue Adgiant! I invite you all to find me on myspace if you are able. You can find my mug on Reggie’s space…add me then you can see the whole family and read blogs there too. I am brand new at this but it has been such a help.

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  21. Hi Eleanor,

    Man you are getting a lot of comments. Sam and you are a HIT! :). I want you to know I forward your commend to John in Alaska. We have a great network going here. Have you finish looking at all my photos on flickr? Let me know if he food you see are appetizing. I might get back in the kitchen and fry more Oreo cookies. I don’t care what anyone say. They are very good. I think I can put away a bag alone. That’s how I keep my
    wash board abs.

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  22. Lou…interesting..you should have seen a whole bunch of pics and three blogs. Is a pink layout with butterflys did you see that?

    Reggie,
    Thanks for forwarding to John. Do you watch Top Chef on Bravo? I love that show and thought of you today. Everything looks delicious. I could be persuaded to eat a fried oreo or two perhaps three…speaking of washboard abs..maybe you should be doing a little belly dancing. I saw all your pics..what a blast. You all really know how to live!

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  23. I love the food network. Top Chef is good too. After I finish my comment to you, I will jump all over Lou.

    Belly dancing sounds good. I can’t find a grass skirt to matches my eyes. You are welcome. I was happy to be able to forward the message to John.

    Reply
  24. To all: I leave for vacation tomorrow to the land of dial up internet service. Yes I’m going to visit my folks in Ohio! While I’m away, I will try to check in every now and then but, in my absence, please give Reggie a hard time whenever possible. With all these nice things that people are saying about him lately, there will be no living with him here in Houston. I thank you in advance for your help in this matter. Stay dry! Lou “Adgiant”

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  25. Hi Eleanor,

    Thank you for the nice message on the board on myspace. Hey did you hear Lou is on vacation! Heee Halll! Let the games begin. I can almost say anything, What are the chances of Lou really checking the board while on vacation? lol. Sheeee. Really Lou is a cool guy. I have to rib him. Tomorrow I hope to have new photos for you all. There is a NF Picnic in Herman Park tomorrow.

    Reply
  26. Hi Everybody,
    I am looking forward to the pics, Reggie…hey, maybe you can work some photoshop magic and play Paperdolls with Lou’s pics…maybe dress HIM in a grass skirt or afix his face on Mt. Rushmore or something. I am saying this in complete confidence…I’m sure he’s not reading.
    Shelley, any ideas??

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  27. Yea good idea. Ask him about his thoughts on a pink too too? Hes gonna kill me. lol. I better be careful I think he has 1 or 2 bloopers from the NF PSA.

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  28. I heard that!!! Just remember that I have a staff ofphotoshop experts. Need I say more? Vacation has been great. Family reunion today. Rock n roll hall of fame wednesday. Mountains.in Pennsylvania Thursday. Just being away from Reggie’s whining and moaning has been a vacation in itself! Must rest, have lots of beer to drink tomorrow.

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  29. Eleanor, Don’t be sucked in by Reggie’s claim that my staff loves him. It’s all an act!!! They just tolerate him because they think I, the boss, likes him and they’re just sucking up to me.

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  30. Hey Eleannor and Reggie We could fix up Lou’s pic put makeup on him while hes gone we could paint his room pink and make it cute

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  31. I was thinking, if we are nice to Lou, maybe he will give me the key to the volt, and maybe just maybe those bloopers will get misplaced and never be seen by the public.

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  32. Yes its a good idea, but do we want to do something that he will like? I think not. Oh I got it. Lets make him listen to Country music. He is not a fan of country. He is not like me, I’m a country music listener all year round.

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  33. why don’t we register him at all the county music sites we can so when he gets home he’ll have hundreds of county fansites emails to sort through…
    NO wait i got it…
    Lou this ones for you:

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  34. Now that is classic. We can always hold that over his head if he gives us a hard time. I love the way you fix problems Eleanor. The three of us make a great team. Shelley Eleanor and Reggie.

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  35. Eleanor, Eleanor, Eleanor, where did I go wrong?!! Luckily, the dial-up I’m using was only capable playing the first 12 seconds of the song otherwise I porbably would have needed a lobotomy. (Pretty much the same kind that Reggie had back in ’89.) The only words I heard were “My turtle got rrun over…” or something like that. I’m sure it didn’t get much better after that.

    And by the way, I already have a “Hello Kitty” outfit so you’ll have to do better than that. Whatever you do, DO NOT, and I repeat, DO NOT SEND ME ANY SHINER BOCK (bottles or cans) OR ANY BELVEDERE VODKA (LITRE SIZE OR LARGER). That would be quite possibly the meanest thing you could possibly do!!! And PLEASE, do not send it at my work address:

    STANANDLOU Advertising
    1001 West Loop South, Suite 600
    Houston, TX 77027

    And, definitely, do not send any party snacks to go with it!

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  36. I like country music too Shelley but I thought this particular song would be just the pill for Lou. What’s say we call a truce???? everyone in favor?

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  37. It’s been a long time since I rock and rolled…been a long time since I did the stroll…been a long time, been a long, been a long lonely, lonely, lonely time….does that answer your question? 🙂

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  38. Eleanor Shelley I’m just getting back to this lovely topic. Yes Country is really good. And Yes Lou is just being modest, he loves the song and he is always humming the tune. Right Lou? What do you think Brian? Oh Brian send me an direct email so that I can add your email address to my mailbox.

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  39. Eleanor, Congratulations. I think your blog has generated the most visits ever on Reggie’s site! If course, you’re much prettier than Reggie which might have helped and you’re certainly more inteligent!!!

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  40. I have to say…this is one of my favorite stops. I love to see what you two are up to. It has been a blast….
    now on to topical news: We found a great dr. today. I had to give the other guy the boot…he was terrible!!! Too much to say here plus it could probably get me sued BUT I think we are on the right road for long term care for the whole family…this new doc confirmed my suspicions…My son is also positive for NF1. I am handling that news much better than the first diagnosis for Sam thanks to the great info on this site! Hugs and Wedgies all around!!

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  41. Eleanor,

    Just remember you have supporters here that you can always talk to. The good thing that there are others that will be a big help to you. Like in Houston. It will get a good reason to come to Houston, and meet me. Hugs to you and lets keep giving me friend Lou a hard time.

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  42. Eleanor, you’re giving wedgies?!!! I’d like to sign Reggie up for a few. We can call them “Reggie Wedgies!” Try saying that three times real fast!!!!

    Glad you’re with a doctor you feel good about. I definitely believe you should watch the Dr. Slopis vidos on Reggie’s site as he talks about the care of children with NF. I found it very informative.

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  43. Lou, after all the good zingers I came up with, You can’t come back with one good one. Come on now. 🙂 Boy we are just having fun. here. I wanted to let you all know I will get to go to the Astros gave today. A friend of mind will be taking me. I know Lou would have been happy to take my if he was in town. I guess he need a vacation every few years. I will have to get some pictures, if I don’t I will have to answer to Lou and everyone else on the blog.

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  44. Hey All,
    I have been quite busy working…possible promotion in the works (yeah) so I just wanted to say HEY!! I missed you guys. Glad to see Shelley was still in here stirring things up!

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  45. Eleanor,

    Did you see my new post? John needs our support. Lets comment on the post for me. What do you say Brian John P. Lou? I will forward messages to him so John will know he can come here to see his support.

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  46. Good stuff Reggie! I like Willie Nelsons version of that song. Take off your coat and throw it in the corner…words to live by. (Unless my kids are reading this….they must hang their coats properly).

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  47. Eleanor my thoughts and prayers are with you and your daughter I have NF 2 and I have had 6 brain surgeries to have tumors removed and I am happy to say that they are all gone now don’t let it get ya’ll down just stay strong and keep going

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  48. that message is not from Virginia Carr its from me Brian Virginia is my mom that message was from me I did not know she had changed the names for the comments but its from me Brian Take care

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  49. Hey Brian,
    Thanks for your support! I am so glad to be in the company of such awesome, strong, encouraging people. You really are amazing!

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  50. Hey Y’all just five more (make that four) more posts till we reach the hundred mark…woooohooo! Who’s gonna be the 100th??? I’m sure Reggie will give a prize…maybe balloons, streamers, free shopping sprees….maybe he’ll don the grass skirt we’ve heard so mcuh about and dance a hula.

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  51. Hey Eleanor,

    When I say your message came in. I stop watching TVLAND to be the 97 comment. I wouldn’t do that for somebody else. Well maybe I will. I do owe Lou one. Why? Well we won’t go in to all if that. Ali I will say, It had something to do with a wonderful lunch friday. Oh about the grass skirt, I will leave that one up to Lou. I can never find anything to match my eyes.

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  52. Hey Shelley Lou and I are going to find some trouble to get into. I will be back. Make sure you check back later. lol. We have to watch the bout and report on it. Should be fun.

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  53. Man, I wanted to be #100! Thanks a lot, Reggie. You could have least let Eleanor be #100 since it was her email that got everything going. It’s easy to see what side your bread is buttered onn whatever the hell that means.

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  54. I love those sayings..I have a great friend who always tells her kids to mind their own kettle of fish or don’t get your knickers in a wad…I bet she’ll know what the whole bread and butter thing is about. I’ll investigate.

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  55. What in the world does that mean Reggie? Is that don’t tell me what to do? I need a tan? I like to roast in the hot sun…what does that mean?

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  56. Ok you will really get a kick out of this one. It means when someone try to fix you up with someone. that they think is good for you. Some trees have more shape then others. You may not like the tree they want to set under. You pick your and I will pick mine.

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  57. Hey I just caught up on the other blogs…Did Lou have his peeps at the ad agency make the doll? He did warn us didn’t he??? Sounds like we need a new diabolical plan…brahhahhahaha….

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  58. You sound so evil, Eleanor. I like it!!! Let me know when you’re ready to make the leap to The Dark Side!!!!
    brahhahhahaha….brahhahhahaha….brahhahhahaha….

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  59. Hi Reggie,

    I have read about NF lately. I am 25 years old and both my brother and I have several cafe au lait marks on our bodies which we got from our dad. Being that there are so many, does it always mean that one has NF? when we were babies 25 year ago, the doctor was concerned about the disease and sent us to a specialist who said it looks like we don’t have the “bad version.” Now I am confused! I am scared and don’t know what to do after coming across all these websites!

    I don’t seem to have any other signs however.

    Jennifer

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  60. Hi Jennifer,

    I’m so happy you came across my site. I would say try to read as much as you can about NF. Find a doctor in your area that is familiar in the disorder and ask questions. As you already know cafe au lait marks are just one sign of NF, but not the only one. It’s best to Check with someone who really know. Don’t live in fear of what you don’t know will ever happen. I hope that make since. Do you know if there are doctors in your area that work with NF patients?

    Thanks Jennifer write anytime

    Reggie

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  61. Reggieeeeee!
    Hello Daahling. I have missed you and Lou and I just wanted to stop by and say hello.
    I miss Houston and hope to visit soon. In the meantime, be good (as good as you guys can be) and I will talk to you soon.

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  62. Eleanor,

    Wow! What a great day. I’m so happy you visit today. I miss you and would be happy to have you visit here ofter. How are you? Please let us know who things are going. I just saw your message on myspace. Thank you. The show was years ago, but still affective to bringing awareness.

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  63. Hello All,

    I was just reading some of the letters and well…..my sister was down this past weekend and we don’t get to see her that much. I have a little 18 month old boy and my sister is a Nurse in Gainesville Florida and we were just talking about all the birthmarks my little boy has. Then my sister wanted to see the marks and she got this weird look and wouldn’t say anything else. Then the next day before she left she showed me a website with all these long words and things I didn’t understand. Then I started doing my own searching and I found this place. I’m going this Friday for my son’s 18 month check up and i wll be bring all the information that i found to the dr. I have a question do most doctors know what NF1 is or cafe-au-lait spots? Cause I don’t live in a big town or anything and some of the doctors are not the smartest tool in the shed if you know what i mean. Any information would be very helpful just e-mail me @ r_maples_11@yahoo.com

    Thanks Rachell & Micah

    Reply
  64. Dear Rachell,

    I’m happy you found my website. I’m sure your doctor will know what you are talking about. You may want to ask if there are clinics in the area for NF Patients. You car also email me direct of you would like to ask more questions. I will keep in contact with you.

    Reggie

    Reply

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