Where does time go

Wow, where does time go? Its already December, last time I posted it was October. I've been busy busy busy with the kids, Noel's therapists coming out to the house- she has started Speech and OT now and doing much better, we actually know she is in the house now. I took Noel for little trip to Morgantown,WV to see a feeding specialist and Im waiting on their report, but I thought it was successful, as she did what she always does for us, throw up when thick or textured foods are offered; one thing she does like is Hamburger Helper grinded up - yuck.

April is right around the corner and Noel will be starting preschool - Im so excited, I really think she will start to blossom then. She will have teachers and people that deal with blind and deaf children everyday and know what kind of things to do for them and how to teach them. Im not saying that I dont , but well I dont. I research as much as possibly can, and I do everything her therapists tell me to do with her as time will allow me , but I think with her going to school, things will start to change. The drive 2 hours one way isnt going to be nice, but its worth it so that my baby can get the best education possible.

Merry Christmas everyone. 

 I probably wont be back until after Christmas, Im working on my hairbow and tutu business and raising 3 kids and working, busy busy busy.

Its been a while

Its been a while, Im sorry that I haven't had the chance to log on and write. Life has been a little hectic with a newborn and Noel is now cruising around the house. She is walking along furniture, climbling all over the place, up on the couch, up the stairs, everywhere. Its great to see her come along the way she is, its such a huge difference from the way she was before when you would never even know she was there. Now when I get home from work and say hello to all the kids, Noel comes crawling up to me and stands up to hug my leg. 

The above is some more recent pics of Noel and her sisters. She is really growing up, im so excited to take her up to a seminar at the West Virginia School for the Deaf/Blind in two weeks, we will be staying there all weekend and learning different thinks about braille, working with the cane and touring the school she will be starting in April 2011. 

Crawling

Noel crawled for the 1st time yesterday, as usual it made me cry. I was so happy to see her go from her one knee crawl to two knee's and two hands , she did run straight into the wall , and she cried for all of about 3 seconds but its a learning process. Mommy is proud.

6/15/2010

So this week we had our appointment with Ms Karen and great reports, we did our year end review and Noel has done great with her gross motor skills. So that was really good news, over the weekend we tried out the pool with Noel, she really isn't into the water that much, but Im gonna really try and get her into there as much as I can this summer. The next few weeks is all about textures, as you can see from the blog this week we are focusing on wood. Tree's cardboard, anything made from wood. We shall see how this texture goes.

Letter to you

Noel, I just want you to know that Im not frusterated with you. You are one of the best things that happened to me. You give me patience when I really don't have it, you show me so many things that I just don't see with my eyes, but I feel with my heart. I love you my dear. One day I will give you this blog printed out, brailled out or whatever so you can see what mommy wrote about you. I love you sweetheart.

Frusterated

In general today Im just frusterated with my life, this sounds so selfish of me, but I never wanted a child with any type of handicap, but I have one so deal with it. The handicap itself is not really what bothers me, its how much time I DON"T have to dedicate to it, life goes on.

When Im at work, Im usually researching or doing something productive towards finding a way to help Noel and help myself learn what I can do for her. Its so hard she can't tell me what she wants from me, what she can maybe see or can't see. When i have any extra money at all I buy the light up toys and I show them to her, sometimes she quiets down other times she doesn't. Tonite for instance, I come home and my husband tells me she has been so cranky all day, I pick her up and she is still so cranky and she eventually just holds on tight and calms down. I set her down to make dinner for her twin sister and the baby and her and she goes off again. How do I know whats wrong with her, she can't tell me , she can't show me.

This is where the selfishness comes in on my part, yes a normal sighted child not always the easiest to deal with either lol I know , her twin sister is all over the place, but what if you have somone that can't tell you anything. All i wanna know is how I can help you.

There are not  many resources out there that help, in our case having 2 children with disabilities and then one income that they say is above the poverty level we don't get any assistance. My husband stays home to be with the girls and I work my butt off trying to provide, sometimes I dont think family nor friends understand what its like. Im tired, im lonely, and sometimes Im just frusterated.

New Adventures

So this week, Noel has maneuvered herself up to the standing position all by herself, holding herself up against the couch. I couldn't find the camera quick enough to take a picture before she fell down but this was a great accomplishment for her. She is now on her way to standing and soon on her adventures to walking. This will be hard for me to see her walk into things and fall, and bump her head and I know a lot of bumps and bruises will be forthcoming but its all a process and Noel and I both have to learn, I have to learn to let Noel have those falls, and stop trying to baby herself. Mommy wont always be there to protect her out in the real world, and Noel has to learn how to adjust herself. So its a learning process for both of us, but I'm sure we will make out just fine.

Mommys Present

So this weekend, we have been pretty busy at work , so I had to work on Sunday too which was Overtime but it was also Mothers Day. O well no big deal I went about my day as usual, wasnt very busy that day I think the applicants thought maybe we were closed, so that was nice. I got home to and to my suprised Miss Noel said the sweetest thing I've ever heard her say
Ma'Ma'Ma'Ma'Ma over and over again, this brought tears to my eyes. Noel usually babbles a lot but never really says a real word , I know she is listening though and she knows her name but just doesn't see the words and how the mouth moves when you talk, when i hold her i always say Ma,Ma, Ma and finally she did it , and on Mothers Day of all days. What a great present. Thank you my beautiful daughter. I love you

Our weekend

Well the glasses are making my eyes water a lot, I hope thats a good thing. Mommy layed me on the floor this weekend and I rolled and wiggled my way over to the french doors ( where all the light was coming in.) Mommy thought that was really good, she held me and I would keep my eyes focused on the outside , the lights the sun. We dont know yet what I can see, but it seems to me I can see a little more then I did before. I cant wait till my next appt ( well thats probably mommy talking ) cause I hate my eye appts, doesnt feel good to be poked and proded.

That was pretty much it this weekend, nothing special, it rained and poured so we didnt get outside this weekend, we even had a tornado watch, Mommy was pretty frightened so we just laid around all weekend. Mommy got me a new book from Seedlings, Goodnight Moon , we read that a few times, I just love to feel the bumpy pages.

My new glasses

So yesterday was the day mommy took me to go pick up my new Miraflex glasses. There purple " mommy thinks thats my favorite color" although im not sure yet what my favorite color is, she just knows it looks good on me.

So I tried them on and I don't mind them at all so far, there a little snug around my head but I have to keep them on so the snugness I can get use too. My sister Kendall was trying to take them off me and check them out, but Mommy took care of  that. So now we wait and see if my eyes adjust to the new glasses and maybe something will come of it, I really hope so, of all I've been thru this would be an easy fix.

Check me out!!!!!!

Another Blog

My mommy is workin on another blog - her prespective of our life together. Check it out

http://www.ropwontrunourlife.blogspot.com/

Miss Karen's Visit

Thats me layin on my my sisters Dora couch, well its our Dora couch we share everything, my sister loves no maybe I should say LOVES!!!!! Dora , I on the other hand do like to listen to Dora and the couch is comfy too : )

Miss Karen came this week to see me, I was very excited when she came, its been a few weeks due to someone always being sick in the house but this week she got out there and we had our visit, I missed her. She brought a few new toys for me to play with and read me a book, which I really enjoyed, I love to feel the bumpy braille books. She held a few of the toys up to my face and what we call my good eye it seems that my mom and Miss Karen think I may be seeing something out of that eye. I actually pay attention, stop whatever it is Im doing and just listen and try to focus it seems. Mommy is hoping maybe with the glasses, they will give me just that extra edge, Miss Karen said even if they don't maybe they can differentiate for me night and day and that will help me with traveling.

I know my Mommy and Daddy want me to see, see my sister, them , my home and surroundings but its God will what happens with my eye's if the doctors have a procedure that can be done to help me, Im sure my mommy and daddy will make a way for it to happen, but until then we wait and do what we can do for now, we learn and we are patient.

Happy Birthday to Me & my sisters

Happy Birthday to me & my sisters today, we are 2 years old. My mom says its hard to believe that 2 years ago today the dr's told her as she was in labor that she should just deliver us and do comfort care * aka * making us comfortable and letting us die. But here we are making new strides everyday. Im so glad my mommy and daddy made the right decision.

So mommy and I went to check out new glasses the other day - here is a preview of what is to come - we picked out purple but the preview is of blue - they didnt have any of that color in the store.

Almost 2 Years old

So yesterday my sister and I went for our 2 year check up. I now weigh 22 lbs and my sister is ahead of me by 2 lbs. We each got 4 shots and it wasnt very nice, i cried and cried and mommy hates to see us cry.

Today my sister took my bottle from me because she didnt feel like drinking out of her sippy cup, and I couldnt find it. So my mommy gave me sissy's sippy cup and drank out of it for the first time, my mommy was so happy. So no more bottles for me, moving on to bigger and better things.

Next Monday Im going to see an eye doctor to pick out my new glasses I cant wait. My doctor at Johns Hopkins isnt very hopeful that this will help me , but says he did get a refraction and says I do have light perception so I have a chance and thats all my mommy wants to hear, I know she will do whatever it takes to give me the opportunity to see ANYTHING!!!!!

On a sad note - my great grandma died 3-26-10 she came to see us in the NICU atleast twice a week while we were there even though she wasnt well, we love her so much and we will miss her dearly, she is holding our sister now Evey ( triplet sister ) RIP Marilyn Saunders

My new sister

Its been a while since ive posted. We have a new addition to the family Giuliana Grace, thats Noel's new little sister. Noel doesn't seem to care one way or another for her yet.

My maternity leave was great, I got to stay home with my girls and really got to see Noel blossom. Noel is sitting up all by herself and is getting up on her hands and knee's now. She is babbling so much more and the other day she was saying " No, No, No " Im tryin to teach her " Ma, Ma, Ma " but no such luck yet, what a day that will be when she says mama. Her vision teacher says she is also coming along well she is very curious about grabbing things out of a container, we are working with her on putting things back in the container and reaching for noisy objects. It will all take time but things are coming along.