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emanuel syndrome sucks..

emma got her report where the do the what age she acts like in this and that.. She was basically from 6 months to 9 months. she did have a 1 month it was in communication. I wish she could just talk to me..I miss baby babble..although Nick does make up for her in the speech dept.. lol..i'm pretty ok with her disablilty. I dont grieve it to much when I see other lil girls its like i'm numb to it. but theres times I do get sad. other than that she is loving school..she has a lil girlfriend at school who is disabled also, they always pair them together they both dont talk but will smile at each other.. they have a rice box full of rice they always play intogether..well anyways.. her mom bought emma a lil neckalce. its a best friend necklace and they each were one. I thought it was just the sweetest thing ever to do. If she would have caught me on the right day I totally would have cried.. So on my behalf. my social anxiety seems to be getting worse. dont know whats that all about. I have alot to say but some how it only comes out in my head and I just am silenced. I know it must seem awkward, hopefully people jsut think im shy not rude..

Nick is doing good he has started horse therapy. of course he loves and thinks hes the best rider in the world..plus he's getting a lil conceited its really hillarious. he got a hair cut yesterday and picked a celebrities and now he thinks he looks like the guy..funny..other than that not much..still dreaming of an extreme home makeover..lol..and an alone vacation..

our vacation

Thank you to camp new hope for giving us a great vacation something we could not have afforded with out your help. you are awsome.





So are vacation was so awsome.. I cant wait till the year is up to do it again. The boys tubed down the river over and over they fished, we got to swim in the river, thats really the only hing i got to do . I could have done more but I feel I play with emma best when it comes to the both of us. not to mean to him he is a great dad. but I just am more fun for her and I figured nick wanted daddy anyways. We got to drive a bob cat everywhere which was fun emma loved the that. My favorite part was the 5 bedroom 3 bath house. No toys everywhere, equiptment.. we live in a 2 bedroom duplex, so we are lacking on the room. so now my dream of being a homeowner is even worse now. so now we have to really file bankruptsy. It was great to see my family even if I am a cow..I didnt want to go home being so big but its life I guess..

emma is still doing really well with her swim therapy its so cute..shes got so much personality for such a quite child. and shes gonna have to join tvs anonomouse{how ever you spell that} she has really regressed alot on eating but with her feeding therapy is actually trialing peanut butter..which is great but i cant bring myself to try it. it just seems dangerous. Her chair got approved just waiting for it to come i'm very excited shes never had anything new. shes a second hand gal. weve realized lately that she loves her bed..she will not fall asleep almost at all now. but you put her in her bed and she rolls right over grabs her bars and passes out its the cutest thing ever..so next i'm gonna try for a new bed again. of course after we fight the potty chair..fight fight bla..

ps my friend michelle is still fighting her health issues, shes has yet to be taken care of properly by a doct, with her cancer. she was getting ready to have a hysterectomy and now shes pregnant with twins, but one them have passed on. so if you could pray for her. she is in a really tough spot. pray for healing and strength.. I love you michelle ..i'm so sorry all this is happening to you. I wish I could be there for you..

going out of town..woohoo

well im kind of excited to be going out of town.. not so excited about the 7 hour drive to get there. we are going to nc,wv and va..ow thats alot of traveling.. we are getting a totally free vacation. These 2 brothers have a big ole cabin on the lake an let people with special needs kids stay there totally free THEY EVEN BUY YOUR FOOD.. how awsome is that..even more awsome for me is they cook one meal a day for you..WHAT jj does not cook so we have to go out to eat..so im excited..

its a 5 bedroom cabin on the lake it is fat people, fishing, swimming, deer, bobcats what no thanks on that one.. but we will have fun.. it has been 2 years and 4 months since ive seen my parents. and about 3 since weve seen all the families..so were happy..im not to happy about going home big as a house..but owell shit happens..

so say a prayer for us for safe travels..for emma not to get sick like i think she is starting to..and pray we do not here are we there yet 1 million times..lol.. so dont miss me too much..if there is someone out there that reads this..later.. did i mention its for almost a week..haaaaahaaa attached are some pics of were we going so beatiful..

nicks genetics are back...

Well I got nicks genetics test back and all is well with most of it.. but unfortunatly he does have a balanced translocation like me.. Can I just say I am so sad. I always dreamed of having kids, doing the normal adolesant things that they do, girlfriends boyfriends heartbreaks. now I may not even get grandchildren. I feel like a bad egg.. Why did this happen to me.. Dont get me wrong I LOVE MY KIDS MORE THAN MY LIFE.. but couldnt this have just skipped him. why can he just have a happy normal life. You know we dont have family not really everyone lives away. So one fear we have is who will take care of our children, especially emma will this fall to nick if he is old enough, now will nick have children or children like emma..doesnt he have enough to worry about than to have this now..so my moto for the day...BLA BLA BLA....PS SORRY FOR THE CUS WORDS BUT i NEEDED IT..

the meaning of emanuel

I thought this was neat..because as you all know emma has emanuel syndrome.

E•man•u•el


Pronunciation: (i-man'yOO-ul), [key]
—n.
a male given name: from a Hebrew word meaning “God is with us.”

I love the meaning of names.

Emma means whole, universal.

So heres my point of view. emma who has lots of problems, maybe because she is a lil broken, maybe..since god is with us, she is whole..this is emma..she is supposed be.. did that make sence.. emma also is a form of emanuelle. I think that is neat since i had no clue she had emanuel syndrome.. Its like a lil circle.. ok.. yea I have my crazy brain on today..

emma's new swing

PS CAME BACK TO UPDATE BEEN 3 DAYS AND SHE STILL LOVES IT THIS THING IS AMAZING





IF YOU HAVE A SPECIAL NEEDS CHILD HECK JUST A BABY.. THIS PRODUCT IS AWSOME..
NEVER HAS EMMA LIKED TUMMY TIME UNTIL NOW..ITS CALLED A WINGBO.. IT IS PRICEY..200.00 but if you say your from melissa's group on special child exchange you can get 10.00 off. from the second I put her in it she was happy.. I have to say I did cry a lil..I never thought she would do tummy time.. that has to come before walking.. i think the website is winbousa.com.. so get one people..

bound by chains

New Graphics

So this post is kind of in reference to so you think you can dance..They did a dance tonight that reminds me of my life. the couple was chained together with a chain. GOOD GOD.. this week I feel I have 3 attached to me. I seriously need a break, a breather alone time and not in the middle of the night..
I LOVE LOVE MY FAMILY. but good golley they are clingey.. alot of people have family an friends around. its mainly us 4. we are bound, by love, stress. I live for them.. but I really just need a break..emma loves so you think you can dance.. If I hold her up she will dance like a crazy women its so cute.. I would get it on video but mommy so is not gonna be in it..I think this week i'm gonna take a break from everything. Im just not feeling well..My back hurts,my head I keep getting dizzy spells and IM REALLY FREAKIN STRESSED. So now I will go back to my lovely chained life..and hope the stress will go away soon.. maybe being lazy this week will do me some good. who knows maybe a miracle will happen and my hubby will let me go to the movies by myself..ha ha...seriously people if I'm gone for 1 hour..the world as they know has come to an end..

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small update

SO weve had a million appointments this week..of course she has another ear infection,plus a yeast infection..do they ever go away.. so this time were gonna try ear drops for 2 months. that seems like a long time to me..but hey if it works..well when we go back in 2 months if her ear is still full of liquid and puss, were going to see the hearing aide specialist about a BAHA SOFT BAND. if its clear we will postpone it for awhile. although if its up to me, i would just keep the appointment. for the past year emma has not had an unclogged or uninfected ear, which means shes not hearing much. since she only has 1 ear its crusial for her to be able to hear. So i'm being a lil pushy with the ent. I would like for her specialist to be a lil more helpful..just urks me..

her new milk is doing her good shes almost to 26 pounds and 34 and half inches..big girl..with the bed and the milk she almost never pukes anymore, life is good.. So i'm trying to get her into a new therapy called vital stim. Its for people who have trouble eating,drinking,drooling. they put electrodes on there neck and its supposed to help in the teaching process.. hopefully I can find someone close enough.. well thats about it..

Being a special needs mom

So today I'm having a bla day. some times I get so tired of going to dr's. Just to hear the when did your baby roll over, crawl walk, talk, etc freakin etc. I really hate the term retarted and hate severly retarted even more. Emma can not do these things, but she can play a toy with all her heart she will pound on her piano like there is no tomorow. She must understand things because she loves veggie tales, spongebob she laughs when things are funny. I wish I could just burn that R word. She does understand things she just cant communicate them. Sometimes she wants to talk so bad she just tries to pull her hair out. YES I understand that she is behind and is damaged in a way. But she is so smart in her own ways. why does it have to be compared to text book. MY GIRL IS FUNNY, BEAUTIFUL, AMAZING, A MIRACLE, sometimes when she looks into your eyes its like shes looking beyond to my heart, I know its so cheesy but I just cry. no ones ever looked at me the way she does, I do feel special and important. One day my girl is gonna walk, she may never talk but We will try everyday and hope for a miracle. I hope one day she will get to eat a taco.. I know how weird am I, but i'm a cali girl and just always thought my child would eat like me..You know I just want her to reach her full potential. I want people to knwo her to know how special she is and not to be scared of her. Sometimes when we go to walmart I just want to head but someone, why do people have to stare.. SO FREAKIN WHAT SHE HAS ONE EAR..she is no different than your child infact she may even be a BIGGER MIRACLE..yes i'm stressed. I'm just tired of the books and the looks.. you know what I mean.. LOOK AT THAT SMILE PEOPLE i JUST CANT GET ENOUGH OF IT..