disappointed again by the government

You know we had so much bad luck lately it just doesnt want to go away..im just so disapointed with every thing.. my husband was unemployed for almost 5 months.. we lost our house our cars.. but we couldnt get help because he unemployed to long.. now hes been working for a month and a half at 8 dollars an hour now we make to much money.. we cant even get a medical card for my son we make to much money..oh but we can get 68 dollars in food stamps.. thanks freakin govt.. i love my kids and my life but god why does everything have to be so hard all the time.. can you tell im not on my zoloft.. cant afford to get it.. I hate the freakin govt..

having A wow is me day..

well we go to the gi doct..get lost, dont use yahoo maps they may look cool with there lil a b and c places to add yea freakin right.. so we get the hospital theres no were to park no were to turn around it took 10 min.. for this preppy dude to turn his rich, huge gas guzzling thing around.. so by the time we sign in we are 31 minutes late.. now this was an hour and a half drive.. after sitting there for 30 min.. they inform me i was late and cant see today..so my day was already shitty.. so i feel the mist coming so I just bolt.. then get my reinforcements the hubby.. im sorry sir you were 30 minutes late.. i swear can anything just go our way just once.. so ssi approved to get a used car.. so i put our rent money up thinking we would get it right back.. ya.. the govt doesnt care about me..

on the good note wish you could see emma walk.. i have to hold her under her arms but she takes of on a stride.. she loves it..we even do it right before bath time we call the naked walk.. shes too cute.. maybe we should get her 2 walkers one for clothes and one for naked walking..lol.. well nics eye appt is tomorow lets hope were not late for that.. did i mention i want to nominate myself for extreme makeover home edition.. im tired, lonely, sad, mad, glad..wish i had my mom and dad..life sucks if you dont have people around you.. you end up feeling like some poor old reclus that has that anxiety about leaving the house.. you end up bying 2 new shirts every six months.. the same shirt different color.. not thinking at the time..that when everyone sees you there gonna think that poor lady only has one shirt.. and i do this to myself every six months.. then what makes it even worse is when some 80 year old lady next to ya has your shirt on... can i just say i need a new life... i need extreme home makeover, extremem makeover,what not to where,and that show that declutters for you.. please...

interesting article on the 22 chromosome

I havent had nicholas's genes tested yet.. for his fear of needles but if he does have the traslocation this is promising news for him..

New York (MedscapeWire) Jun 27 — Chromosome 22, one of the smallest human chromosomes, is known to be a hot spot for disease, including heart defects, leukemias, and schizophrenia. Genetics researchers at The Children's Hospital of Philadelphia in Pennsylvania are teasing out details of how that chromosome's chemical structure renders it particularly vulnerable to defects and rearrangements that may result in diseases. Their latest study focuses on a rare inherited condition called +der(22) syndrome that includes mental retardation, a heart defect, a small chin, and a cleft or abnormal palate. The researchers described unusual, unstable DNA structures in parents of children with the disease.
Reporting in the July issue of Human Molecular Genetics, the research team isolated specific DNA sequences at the junctions where broken pieces of chromosomes 11 and 22 attach to each other in a rearrangement called a translocation. The researchers found unusually frequent sequences of adenine and thymine, 2 of the 4 chemical letters in the genetic alphabet that spells out the body's blueprint. These repetitive stretches are called AT-rich repeats and are arranged in an unusual configuration called a palindrome.

"These palindromic sequences are unstable, and allow us to propose a model for how this translocation occurs," said Beverly S. Emanuel, PhD, chief of human genetics and molecular biology at The Children's Hospital of Philadelphia and senior author of the paper.

"This model of the disease's origin in chromosome structure is important not only for understanding +der(22) syndrome, but also may assist us in understanding other translocations," said Dr. Emanuel. Other diseases associated with such translocations in chromosomes include certain types of cancer and other birth defects.

The model draws on the fact that in other organisms, unstable palindromic DNA sequences are inclined to protrude from the DNA double helix in fragile structures called hairpins. These hairpins are weak points where the DNA can break and rearrange, causing abnormalities of the chromosomes.

When chromosomes 11 and 22 break, then exchange genetic material in a balanced translocation, the genes retain their normal function and a person carrying the abnormal chromosomes has no symptoms of disease. However, that person's child runs a risk of suffering from +der(22) syndrome if he or she inherits an extra copy of one of the rearranged chromosomes. Further studies in Dr. Emanuel's laboratory are developing a sensitive diagnostic test to help parents who carry the translocation ensure that their future children do not have the syndrome.

Unlike more random chromosome translocations, the translocation between chromosomes 11 and 22 occurs time and again in a population, suggesting that the specific locations where the chromosomes break are structurally unstable. Disorders based in peculiarities of chromosome architecture fall under a relatively new concept in medicine: "genomic disease." Such diseases originate in the structure of the genome — the full complement of genes carried by a set of chromosomes.

The current study of chromosome structure builds on more than 20 years of research conducted by the team on chromosome 22, as well as the team's participation in the federally sponsored Human Genome Project, the multicenter effort to compile the order of the 2 billion DNA bases of all 23 human chromosomes. The research group provided genetic sequences for the Human Genome Project's announcement in December that chromosome 22 was the first human chromosome to be sequenced.

life

today I am reminded that we all need to hug,kiss, and love our children. just how they are.. so many times people, me take for granted life and the life of our children. I am a regular member on a chat room type place, its a place were moms came come together and chat about there special needs child. sometimes even get free or reduced medical supplies. if it werent for this place emma would have no feeding tube extentions and for me I would have no many people to chat with.. any how.. I made a friend on there, not a close friend but we have chatted. her baby has passed on.. I hope the mom is ok.. i just feel so bad. plus another mother on this site just lost her lil boy.. life is so scary,funny we never know when its going to be our time.. so please just love your life, love your family..be grateful..please say a prayer for cynthia and her baby cheyenne.
on the good front.. emma ate about 2 tablespoons of baby food tonight i think she really liked the flavor.. this is the ONLY time she has ever reacted like this.. she was trying to chew it and even swallowing it.. I know it smelled good.. If I put it down she would wine.. which is new too.. shes so peaceful.. ow my car is about to get repossed all i can say astaloowago.. buddy.. on the good news is ssi is going to give me 2000 of her money to buy a used car.. wooohooo.. I just pray to the lemon fairies to stay away from my car.. i hopefully i can go get it tomorow.. well thinking of everyone.. oh yea emma got her 5th tooth..thats only in 3 months crazy. and she has another ear infection thats 3 in 2 months.. so ear plugs are probably in our close future.. bless and love to all..

emma and speech

well we went for our 1st speech eval at the new place, loved it.. Its a christian based therapy place and they just seem so nice.. her appointment went good.. I know as emma's mom how much she communicates.. she smiles and interacts with me but no type of verbalizations or really communicating. i dont know you guys would understand that but.. she scored at a 1-3 month old level on verbalization. so our sessions are going to somewhat focused on finding the right equiptment for her.. although it will have to be tough because she will beat something to death.. guess we cant get her a puppy. lol... nics doing good in school. I think hes gonna need glasses.. boo hoo... hes been in some type of special education since he was about 3 and a half. I guess tennesse is more strict out here.. even though he cant concentrate and complete his work in a timely matter I think there gonna drop him. unless he winds up with hearing problems.. hes failed 2 hearing tests and passed one so im still gonna get that rechecked.. other than that all is good.. still broke, fat, depressed.. but im still kickin..lol..

I hate the government

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sorry for you sensitive folks out there... but i really do hate the govt.. they dont care about people.. if your unemployed to long you cant get help but if youve had a job for 2 weeks you cant get help in a hurry either.. they tell i have to cancel my food stamp car in south carolina to get help so i do.. now they say were not in emergency status any longer.. what the F four and half months of being unemployed is not an emergency.. my kid has flunked a hearing test and an eye exam.. is that not cause for some medicaid in a hurry... frikriloeirlakdsnfkjdbk;....

watch out world

MY LITTLE ARTIST..

Well today and everyday im reminded what a total miracle emma is.. when i see pictures of other children with her syndrome..alot have passed and some are fighthing for there lives.. emma was blessed i am so thankful for her health.. she may not walk or talk or eat.. but i would have that any day over her being seriously ill.. Please pray for lil recesse.. she is really ill and has a constant battle with life.. I wine and cry about my bills and life but nothing would be worse than having a sick child.. i seriously need to check on nicholas's nerves or what ever you want to call it.. he just has no sense of handling his emotions.. he goes from 1 to 10 in 1 second flat.. he will hit himself and just go crazy.. maybe hes seriously spoiled i just dont know.. i know it tears my nerves up..

Well so far school is going ok with nic.. were out of adhd meds so its been a chore to do work with him.. he started cub scouts this week.. can you believe the uniforms are like 100 dollars.. thats freakin crazy.. he seems to like his school though.. well we seen a pediatrician.. who sucks.. hopefully when we get to meet ours hell be nice.. we should be starting speech physical and occupational therapies soon.. still havent found anyone to order her a walker..blaa.. emma is doing really good she did have a second ear infection in 1 month.. so i might look into an ear tube.. we have to protect her one ear..she has been getting really vocal lately its so cute.. still no real baby sounds.. but hey atleast its some noise.. shes loving to stand up.. shes also liking stage 3 baby food.. not really drinking though.. we got a new fancy feeding pump renting of course.. oh yea i might be able to get a paycheck since i stay home and take care of emma.. so cool.. and emma might start school.. what i know.. its for disabled kids its only like 6 hours a week but i think it might be good for her.. of course ill check it out.. well later for now.. me and jj are ok.. well be better when we get caught up..