Tuesday, November 2, 2010

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.. :(

Wednesday, August 18, 2010

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..

Thursday, April 22, 2010


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..

Thursday, April 1, 2010


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..

Thursday, February 25, 2010

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..


Toes in the sand

Bahama's princess

Bahama's princess
make a wish 2013



i love u

i love u

Emma in the nicu

Emma in the nicu