Pray for alayha

Need urgent prayers tonight for baby alayha.. shes new to our emanuel family and I feel very connected to her and her mother. its amazing how one lil syndrome can bring so many families together. her mother is so young it just breaks my heart so please even if you dont know her just say a simple prayer.. you can do it baby alayha we are all praying and loving you from afar..
My second prayer is for another emanuel family.. one friend is getting ready. to fight breast cancer and has surgery soon.. please keep linda in your prayers..

love your family and hold them tight.. this world is crazy.. :(

summer update

life has been slow this summer I had big plans to live at the pool all summer and be tan.. here I am vampire white as ever an only been to the pool 2 times.. for all that doesnt know I had breast reduction surgery this summer something ive wanted since the 9th grade.. they took almost 10pds.. I know wow..well Ive had alot of setbacks, stiches poppin open I mean wide open, staph infection..its been a fun summer.. on top of that emma had phemonia twice this summer. Nick off his meds has been nuts. . although george lopez on tv taught what an upstair outsidey is and hes very excited for the future..lol hes been on his meds for 2 weeks now and so far I dont like them he just seems so sad. im sure they will kick in and hell be back to his normal fun loving temper tantrum self..
Emma is doing really good right. Her standing is awsome but she still relies on us all the time to catch dont know how to break that bad habbit. She is getting more personality everyday. I still dont feel she will ever talk, although I dream all the time of hearing mama from her mouth.. I even day dream what her lil voice would be like..she is still getting all her therapies which can be tiring for all of us.. school is going great with her she doesnt even know i excist once we reach the class. Its almost like she throws her arms up ready for her toys and she knows nothing else. horse therapy starts next week for nic so add another day to add my schedule..fun times people..

overwhelmed

You know somedays I handle my life really really well..somedays..most days I guess.. but this week..wow..am I over whelmed..I long for the normal life..

I am depressed..
My husband is bipolar/crazy..lol
Nick is asbergers/adhd and now being tested for an auditory processing disorder..plus he has my gene and will probably have an emanuel baby.
Emma emanuel syndrome, 1 ear, tube fed..

can we see why I'm stressed and depressed..

Today me and my big ole GENES are depressing me..I love my children more than life and sometimes it really bothers that my genes have done a number..I dont regret having them but today I want more for them.. I want them to be normal..

So today..I dream of mexico..no drs and specialist..daily just one normal freakin day..

pics

just an update

So many changes for emmster this coming month.. we are transitioning to the real school.. emma will start on monday.. i'm happy but terrified..I know in my heart its what best for her.. I jsut hope they feed her right and put her on the potty..lol.. emma is loosing her therapist..shes moving on to bigger and better things..Its really tearing me up because she has become my friend in alot of ways, plus she was a kick ass therapist..

So new things with emma.... she got dafo's they are feet braces.. she got this suit called theratogs..which work great..BUT..have quit..its like putting on tree lights that are tangeled 10 times aday..so I quit.. emma is pinching and pulling hair and she throws a pretty awsome temper tantrum..she fully thows herself backwards..so its kind of good because it is considered milestones.. emma has discovered her tongue and she loves to stick it out.. she even likes to lick people..lol.. gross I know.. but at the same time its hilarious when she continuely licks you none stop.. shes just a charecter..she has 1 million facial expressions.. I wish I knew what they all meaned..

so here are some pics from her last day at her preschool for early intervention.. these ladies are great.. and the best thing is they all love my princess.. especially her clothes..lol..oops couldnt get the pics to download will do later..

Dear God..

Today emma has a horrible cold or what ever it is..she is puking and coughing like crazy. Tube feeds are coming like crazy and sometimes I feel overwhelmed and alone. But having a special child has opened my eyes to all the sick children out there. I have so much respect for people that have unwavering faith in god. Because today I'm just confused why he does what he does.. Reading blogs from all over the US, I just dont know why. why do lil ones get cancer or mito or battens or all the other horrible things that take these lil angels from us. It breaks my heart everytime, my husband doesnt understand why I would read all these stories sometimes I wonder why too. But I have some type of conection with all these families.. I would take tube feeds, puke, diarea any day over any of all these.. emanuel syndrome is nothing compared to the other options.. please love your children and remember life could be worse.

heres a couple kids that need prayers..
http://laylagrace.org/
http://65redroses.livejournal.com/
http://momentswithmoriah.blogspot.com/

hearing

Well we have had a fairly good christmas. Emma got her hearing aide! I had no idea how bad she was hearing until I say her face light up with her hearing aide. The best way I can describe it is to say it was like and is like watching an autistic child wake up. everything has been exciting for her and for me to watch. Dont run out of meds when your child gets a miracle..lol I have been a mess.. nicks insurance got cut off so he is out of meds till the 1st of the year so its been fun with him too. he had good christmas with getting a wii. its holiday time that we realize how alone we really are. In south carolina we always ate with neighbors. we are happy just being us but sometimes it gets to be to much. like right now nick is laying in the floor crying I hate my life. How many times must a child jump from bed to bed and fall before he stops. maybe when something is broken. he doesnt cry like a normal 9 year old. his autism or what ever it is is getting on my nerves. this boy will not wear clothes. whats that boy on snl thats in his undies all the time..stewey? It can be overwhelming at times and i'm tired of begging for clothes.
I'm trying to pick out schools for emma my choice is between 2. I have to figure out full or part day. Im so conflicted. no one has ever taken care of emma. will she handle being away that long will they feed her right. I know that I need the break. I have lots of excersise planned when she goes. but its all very stressfull. well. I will keep you all posted on her hearing and all. its a true miracle..an expensive one..thanks insurance..lol..happy holidays to you all. if you have not seen the video of emma hearing yet. the link is right below..

My Montage 12/26/09 at OneTrueMedia.com

Make photo slide shows at www.OneTrueMedia.com

Make your own Countdown Clocks

having a special child.

you know one thing I hate to hear is bless your heart or i'm so sorry..when i tell them what goes on with emma..it just erks me..kids on the other hand have been awsome. they are starting to notice her ear now.. so it makes for unusual conversations..like where did her ear go..I just told her god kept and shell get a new one in a couple years. then another lil boys came up and said aaaaaaaaa look at her lil ear its so cute.. can i hold her..I didnt let him hold her..but it was so sweet..I just wish adults would ask questions instead of staring..im gonna find a bib for emma takes a pic it last longer. or do you think your stares will cure me..