neurofibromatosis cafe

A place to talk about NF, have fun and share.

Congratulations, Emily!!!!

Hey everyone! Hope you all are doing well! I have a free minute while the baby naps so I just wanted to drop in and say hello. Also, we got a phone call a couple of days ago from the Ghost Hunters production team, they are considering using us in one of their episodes. We are still having problems with whatever is in our house so I will gladly be on tv if it means I get some help, lol.

I have some news about Elijah but I am going to update his website with that so make sure you read it!

I’ll get back when I can, I just cannot believe how busy its been around here! My husband is having surgery again next week also so I will be extra busy😦

“Morty” is great, he really is growing like a weed! The outfit we brought him home from the hospital in

doesnt fit him anymore and its only been 5 weeks. Here are a couple of new pictures: (SEE ABOVE OR CLICK ON LINKS)

http://i28.tinypic.com/2e213dx.jpg
http://i32.tinypic.com/6pqjhj.jpg

Unfortunately Elijah started one of his vomiting episodes this morning so he is at the ER right now getting fluids, but Bill just called and said he is already feeling much better so hopefully he wont be admitted and he will come home in a little while.

– Emily

April 4, 2008 - Posted by | neurofibromatosis |

77 Comments »

  1. Aw, our very own blog post, we feel loved! lol

    Comment by Emily | April 4, 2008 | Reply

  2. I love it. Emily Wonderful photos. Send us a family photo. I know Brian will love this blog as well.

    Comment by Reggie Bibbs | April 4, 2008 | Reply

  3. Beautiful family, Emily! We love you!!!

    Comment by - the blogger formerly known as Lou | April 4, 2008 | Reply

  4. Did everyone check out Emily’s photos on my photo page?

    Comment by Reggie Bibbs | April 4, 2008 | Reply

  5. hey Emily glad is going well and yes I love Emily’s blog Emily we love you bunches I am kind of jealous because Emily has her own blog and I have never had one

    Comment by Brian | April 5, 2008 | Reply

  6. Brian, I promise you the minute YOU have a baby, we will immediately post a blog commemorating the event!!! I promise!!!
    Lou

    Comment by - the blogger formerly known as Lou | April 5, 2008 | Reply

  7. Thanks Lou but I dont plan on having a baby now when I get married the woman Im with might have a baby but I dont plan on having one man cant have babies only women can

    Comment by Brian | April 5, 2008 | Reply

  8. What a beautiful, beautiful baby. I bet you are so very proud. Good luck to your husband on his surgery. I can’t wait till I am a Gramma!!!!!😀

    Comment by Patricia | April 5, 2008 | Reply

  9. where is everybody is everybody slacking today it looks like I am the first one to make a comment this morning oh I forgot its Sunday church day

    Comment by Brian | April 6, 2008 | Reply

  10. Yeah, Reggie ought to be on shortly. He’s usually home by noon unless his parole officer is lurking nearby.

    Comment by - the blogger formerly known as Lou | April 6, 2008 | Reply

  11. whats up Lou I know deep down you really love Reggie why do you give him such a hard time

    Comment by Brian | April 6, 2008 | Reply

  12. Hey guys, just have a minute to drop in! We are doing major house cleaning today because my grandparents are coming to stay with us this week while Bill is in the hospital. Elijah is doing much better, after he got some fluids in him he was like his old self again. He sees Dr. Bousvaros in Boston tomorrow so I am hoping that he can give us some answers.
    Well the baby is crying again, he is still fighting his cold, so I have to go. I’ll be back tomorrow to let you know how Elijah’s appointment went.

    Comment by Emily | April 6, 2008 | Reply

  13. Where’s that coward, Reggie Bibbs?

    Comment by - the blogger formerly known as Lou | April 6, 2008 | Reply

  14. thanks Emily I am praying for Elijah

    Comment by Brian | April 6, 2008 | Reply

  15. On comment 13 Why is Reggie a coward

    Comment by Shelley | April 6, 2008 | Reply

  16. Lou you do need a baby sitter and a spanking

    Comment by Shelley | April 6, 2008 | Reply

  17. Hey y’all, sorry for not being here today. I’m here now until bed time. I see I missed out on a lot.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  18. welcomee Reggie we missed you today

    Comment by Brian | April 6, 2008 | Reply

  19. Brian by now you know Lou is a few cans short of a six pack. You do know that don’t you? Some of the things he says you have to let roll off you like water on a ducks back? Have you ever seen water on a duck’s back? Pay no attention to him just like the wizard told Dorothy. Remember when Dorothy went to see the wizard? It was a little old man behind the curtain told her. Pay no attention to they guy behind the curtain. The wizard has spoken.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  20. I’m right here? I’m not a coward you fool.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  21. Lou just don’t know, I will roll on him faster then you can shake a stick.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  22. Hi Emily, How are you feeling? I think Lou wants us a;; to come over his house for dinner. He is going to cook for us all.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  23. I’m here Brian. I’m making some espresso so I’m getting ready to get my buzz on.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  24. Reggie, you are a coward because you have not been o nthis blo all day!!!! A few cans short of a six-pack?!!! Reggie, Reggie, Reggie…do I need to tell eberyone what happened at a certain business establishment on Sage?!!!!!

    Comment by - the blogger formerly known as Lou | April 6, 2008 | Reply

  25. Lou, you can’t prove anything. DO you have photos? We have photos of everyplace we have been. Can you produce some photos
    to prove anything else? Anybody can say anything about where they have been. You got to come up with something else.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  26. FINE, NEXT TIME REGGIE…BEWARE!!!!

    Comment by - the blogger formerly known as Lou | April 6, 2008 | Reply

  27. boy yall are really going to town man I cant believe yall at all

    Comment by Brian | April 6, 2008 | Reply

  28. Brian it’s cool. Lou is harmless. He is just having fun at my expense.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  29. Brian, get ready to blog!!!!

    Comment by - the blogger formerly known as Lou | April 6, 2008 | Reply

  30. Where everybody at?

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  31. Hey there Reggie Im here Lou is a bad boy

    Comment by Shelley | April 6, 2008 | Reply

  32. And your point is?!!

    Comment by - the blogger formerly known as Lou | April 6, 2008 | Reply

  33. Hey Shelley, whats up? Brian was here, but now I think is gone. maybe he will be back.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  34. Wait till Elena has a boyfriend Lou

    Comment by Shelley | April 6, 2008 | Reply

  35. NEVER!!!!!!!!!!!!!!!!!!!!

    Comment by - the blogger formerly known as Lou | April 6, 2008 | Reply

  36. AW why not Lou

    Comment by Shelley | April 6, 2008 | Reply

  37. Lou I’m answering an email. I’m still here.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  38. Lou you are good a helping people with knee caps right?

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  39. Absolutely!

    Comment by - the blogger formerly known as Lou | April 6, 2008 | Reply

  40. I am here but dont know for how long I have a really bad terrible headache I cant seem to get it to go away but I think it has to do with the shunt in my brain I think it might be clogged and causing my bad headache but I will try to be on as long as I can stand it

    Comment by Brian | April 6, 2008 | Reply

  41. I’m sure if you give it time it will get better Brian.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  42. Lou I was wondering why you keep the crow bar in your back seat.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  43. Or should I say tire iron.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  44. boy that really scares me that Lou keeps a crow bar in the back seat I hope so Reggie I am seeing my neuro surgeon friday to get a check up on the surgery he did on my leg and I will talk to him about the shunt and see what he says

    Comment by Brian | April 6, 2008 | Reply

  45. lol Brian.

    Comment by Reggie Bibbs | April 6, 2008 | Reply

  46. whats up Shelley I tell you Reggie Lou keeping a crow bar in the back seat sure does not sound very friendly

    Comment by Brian | April 6, 2008 | Reply

  47. I hate crows!

    Comment by - the blogger formerly known as Lou | April 7, 2008 | Reply

  48. Morning Y’all I just know it’s going to be a dusy day on the blog. Right?

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  49. Well, atleast it is not a gun, When I had a CHL, I use to carry a 45 with me, but I did not renew my license, I did not have the money at the time, plus I was not shooting as much as anymore, I use to go target shooting or, shoot trap just about every weekend. Now we do other stuff. I still have my guns, I just don’t go as often.
    I am so tired, I was sick yesterday, I am still feeling yakky but went to work anyway.😦

    Comment by Patricia | April 7, 2008 | Reply

  50. I hope you start feeling better by the end of the work day. Maybe you just need some rest. One thing I don’t need is a gun. No not me. I would hate to pop a cap in someone to tick me off.

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  51. I have never shot anyone, and I hope I never have to. I just shoot at targets. But knowing I have a gun and knowing how to use one gives me a sense of of security.

    Comment by Patricia | April 7, 2008 | Reply

  52. I like guns but the only time I use one is when I deer hunt but I have not been in a long time

    Comment by Brian | April 7, 2008 | Reply

  53. I like rifles and shot guns too, but sometimes the kick gives me a bruise, I like to stick to a 20 guage, that I can handle.

    Comment by Patricia | April 7, 2008 | Reply

  54. hey Patricia have you ever heard of a rifle that is a 257 roberts they are really hard to find

    Comment by Brian | April 7, 2008 | Reply

  55. I never shot a gun and I really don’t want one. I had a bee bee gun when I was just a young boy. We use to shot coke cans. Once the old man had a old car that was a junk car. It was a galaxie 500 1962. We shot the windows out with our bee bee guy. My brother and me with two friends. It was really fun. The best thing about it we didn’t get a whipping. The old man didn’t care. He told us he saw us doing it. He had just gotten a new car anyway and we knew he was junking it. Ok Lou now your turn confessions.

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  56. you know something Reggie that would have been a nice car to fix up

    Comment by Brian | April 7, 2008 | Reply

  57. hey everybody I am going to get a cat scan on my head today to find out if my shunt is causing my headaches and some other problems like pressure on my eyes causing them to burn like they are irretated

    Comment by Brian | April 7, 2008 | Reply

  58. I’ve never done anything wrong. Ever.

    Comment by - the blogger formerly known as Lou | April 7, 2008 | Reply

  59. I’ve always screwed up correctly.

    Comment by - the blogger formerly known as Lou | April 7, 2008 | Reply

  60. I would of got my a$$ tore up for that one, to #54 never heare of that one, but I did shoot a 44 magna “ONE” time that was all it took, I handed that gun back to brother in law just as fast as I shot it, there is a hard kick back on that one, I think I will just stick to my 45s, that is powerful enough for me.

    Comment by Patricia | April 7, 2008 | Reply

  61. I have shot a 7 mag and it has a pretty good kick as well also I am a huge fan of the COLT 45 combat commander

    Comment by Brian | April 7, 2008 | Reply

  62. Elijah just got out of the doctors office in Boston (I am home with the baby, Bill took him) and he said that the doctor told him that Elijah definitely has Cyclic Vomiting Syndrome. Unfortunately there is no way to make it stop, you can only really treat the vomiting episodes with fluids and nausea medication when they happen, it is just something he will have to outgrow. But he is trying him on a medication that he said has lengthened the amount of time in between vomiting episodes in 70% of patients. It is actually an anti-depressant, but they are also using it to treat CVS. Hopefully it will work for him.
    Thank you guys for keeping us in your prayers, it means so much to me to have friends that care! *HUGS*

    Okay, so, what did I miss? Is Lou being nice??

    Comment by Emily | April 7, 2008 | Reply

  63. Emily,

    It’s good that you know what the problem is with Elijah. We will keep praying for him. You know kids grow like a weed and maybe he will grow out of it fast. I bet if you hid all of Lou’s pictures it will help. Ok, I’m sorry I just couldn’t help it.

    It’s a blessing to have friends here. Thank you for putting up with us. And to answer your question, No Lou has not been nice, but do we really expect him to be?

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  64. hey Emily I will keep praying for Elijah I just wish we could grow out of NF but it least you know for sure that thats what it is

    Comment by Brian | April 7, 2008 | Reply

  65. I dunno Reggie, I think Lou has a sweet side to him that he just hides to keep up his “bad boy” image, lol. I bet if I tickled him he would giggle like a school girl! LMAO at that mental image!!

    Brian, I agree, I wish NF was something you could just outgrow, but maybe one day there will be a cure and nobody will have to suffer from it. I know that having a child with NF makes me want to do anything I can to help get us to that day when we can say we have a cure finally!

    Comment by Emily | April 7, 2008 | Reply

  66. Emily told you Lou allways needs a spanking lol

    Comment by Shelley | April 7, 2008 | Reply

  67. We all love Lou

    Comment by Shelley | April 7, 2008 | Reply

  68. Comment 65. I think you are right Emily. He would laugh just like a little school girl. lol. Two offers Lou can’t refuse.

    Comment by Reggie Bibbs | April 7, 2008 | Reply

  69. Emily I read Elijah’s new Journal I am so happy for yall that yall have gotten the news and answers yall are looking for well just do me a huge favor and tell Elijah to be strong and hang in there

    Comment by Brian | April 7, 2008 | Reply

  70. whats up Shelley

    Comment by Brian | April 7, 2008 | Reply

  71. Going to the Dr today Brian hope everything is ok

    Comment by Shelley | April 8, 2008 | Reply

  72. I am waiting for the Dr to call on the results of my cat scan I should here something today hopefully

    Comment by Brian | April 8, 2008 | Reply

  73. Hey Everyone, I will be here later. Going to the doctor. Getting my eyes check out. Keep blogging. Brian My best to you.

    Comment by Reggie Bibbs | April 8, 2008 | Reply

  74. thanks Reggie I am feeling a little better today at least better than I was yesterday but my head still hurts a little bit but I am trying my best to keep the blog going

    Comment by Brian | April 8, 2008 | Reply

  75. Hey everyone, Bill had his back surgery today, everything went great and he might be able to come home tomorrow!

    Comment by Emily | April 8, 2008 | Reply

  76. Hi Emily,

    Thank you for the update on Bill. I hope all of you are doing well. I will be back later.

    Comment by Reggie Bibbs | April 8, 2008 | Reply

  77. hey Emily glad Bill’s back surgery went well thats great news I hope all is well with you and your family

    Comment by Brian | April 20, 2008 | Reply


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