Hello, guest
Name: mspeachpit
[ Original Post ]
hi. my name is rachel. my one year old daughter was diagnosed with neurofibromatosis at nine months. i have spina bifida and no friends. anyone there?
Your Name


Your Reply here

Name: mspeachpit | Date: Sep 28th, 2006 6:36 PM
i can be reached at [email protected] 

Name: beckyandjess | Date: Nov 4th, 2006 3:34 PM
hello, my daughter and myself have neurofibromatosis ansd scolliosis of the spine, 

Name: mspeachpit | Date: Nov 4th, 2006 5:15 PM
do y'all have nf1 or 2? my hubby and daughter have nf1 and hubby also had scoliosis but had a rod put in when he was six. 

Name: babyhuie61 | Date: Nov 4th, 2006 8:24 PM
Hi rachel. You can e-mail me at [email protected]


Name: mspeachpit | Date: Nov 6th, 2006 3:27 PM
hi babyhuie61. i've seen u in other posts b4. 

Name: babyhuie61 | Date: Nov 7th, 2006 2:57 AM
Hi mspeachpit. It is very nice to meet you. 

Name: mspeachpit | Date: Nov 7th, 2006 1:19 PM
u can call me rachel if u want. 

Name: mspeachpit | Date: Nov 7th, 2006 1:20 PM
i dont bite! lol 

Name: mspeachpit | Date: Nov 7th, 2006 1:21 PM
by the way, what is 22q13? 

Name: babyhuie61 | Date: Nov 11th, 2006 1:44 AM
Hi Rachel. I am glad that you don't bite,lol. That might hurt. Anyways 22q13 is the 22nd chromosome quadrant 13 of the long arm. It is a chromosome problem. A piuece of the long arm fell off when I was pregnant with sarah. Unfortunately, that particular chromosome is responsible for your fine and gross motor skills. It was a rare syndrome when sarah was born 15yrs ago. Now it is starting to come out more and more. it affects each individual differently. It is not genetic. It was just one of those things that happened.


Name: mspeachpit | Date: Nov 11th, 2006 3:43 PM
what kind of problems does it cause? 

Name: babyhuie61 | Date: Nov 11th, 2006 8:05 PM
Hi Rachel. It can cause alot of problems. Some of them include not talking, not walking, some can not feed themselves, others will never be toilet trained. It affects kids mentally and physically. Sarah needs alot of care. She does help out alot and can do a few things for herself.


Name: mspeachpit | Date: Nov 11th, 2006 11:44 PM
well, thats a good thing, then. 

Name: babyhuie61 | Date: Nov 13th, 2006 5:55 PM
Hi Rachel. yes it can be a good thing. Where are you from?


Name: mspeachpit | Date: Nov 13th, 2006 6:04 PM
i am in nc. u? 

Name: babyhuie61 | Date: Nov 14th, 2006 2:00 AM
I am in Hamilton, Ontario, Canada. 

Name: mspeachpit | Date: Nov 14th, 2006 1:26 PM
boy, we're pretty far apart, then! its neat to be able to talk to someone not in ur immediate area. by the way, what caused the head injury u said she got at school? 

Name: babyhuie61 | Date: Nov 15th, 2006 1:23 AM
What caused sarah's head injury is that she fell on her right side right onto the hard concrete.


Name: mspeachpit | Date: Nov 15th, 2006 1:15 PM
omg. thats awful. was it an accident or did someone push her down or what? my older sisters name is sarah. lol 

Name: babyhuie61 | Date: Nov 16th, 2006 2:27 AM
Hi rachel. it was an accident. that is what they say anyways. 

Name: mspeachpit | Date: Nov 16th, 2006 1:45 PM
its not like anyone would admit it if it was anything other than an accident anyway, right? 

Name: babyhuie61 | Date: Nov 18th, 2006 3:10 AM
Hi rachel. You got that right. the problem is I will really never know the truth. 

Name: mspeachpit | Date: Nov 18th, 2006 9:02 PM
well, sometimes the truth is better left unknown, u know? 

Name: babyhuie61 | Date: Nov 19th, 2006 12:28 AM
That is for sure. 

Name: mspeachpit | Date: Nov 19th, 2006 7:22 PM
if it had been my child, i wouldnt want to know if someone had been mean to her on purpose. 

Name: babyhuie61 | Date: Nov 26th, 2006 3:30 AM
Hi Rachel. I hear ya. I would not want to know either. 

Name: Help. | Date: Dec 2nd, 2006 12:59 AM
mspeach pit my cousin and ant both have spinal bifida. Not fun I'm sure. Rachel you and I seem to be going through quite a bit just now. I know your going to be laid up with sergury and all in the next coming weeks. If you would like you can E-Mail me any time at [email protected]. My name is Tara, I'm a very good listener and would like to be your friend. I hope to hear from you. If not take care and I'll chat with you on the SAHM forum. 

Name: mspeachpit | Date: Dec 2nd, 2006 2:00 AM
Hi, Tara. I have added you to my email address book. 

Name: beckyandjess | Date: Jul 30th, 2007 10:29 PM
hello again, its been a while since i last came in. 

Name: hahaha | Date: Aug 22nd, 2009 11:02 PM
Are you for real 

Name: lilc | Date: Aug 3rd, 2010 12:10 AM

Copyright 2024© babycrowd.com. All rights reserved.
Contact Us | About Us | Browse Journals | Forums | Advertise With Us