My Micro Preemie Noel

My how time flys

2012-01-22T08:27:00.000-08:00

Time does fly when your having fun so they say. Ive been super busy with working and driving Noel to and from school and her two sisters. Its definitely a different journey but I do love it and wouldn't trade it for anything. The West Virginia School for the Deaf and Blind has done so much for Noel she is progressing more then I thought she would have by this time and she will still have another year of preschool next year and Id like to think by then she may be caught up enough with her peers, i definitely believe it could happen I didn't think she would be walking already without the assistance of her AFO's / DAFO's by the way she hates.

I just got finished packing a bag for Noel for the whole week, its getting to be winter here and we have had snow once or twice I drove the mountains two weeks ago when the school didn't close and thought - what am i doing these roads were not plowed , icy and I just took it slow I was scared to death especially because I had her in the car would have been one thing if she wasn't but then again I wouldn't have been going that way if she wasn't. So the bag is packed just as an emergency bag so in case she needs to stay which is a great option if she needs to do she can and has the things she needs, its a dangerous drive without snow and ice add that its treacherous.

Well back to school tomorrow a new week begins every week I get so excited to see what she will learn next.

Noel at her Christmas Play 12/16/2011 standing all by herself

School Pictures

2011-12-02T07:19:00.000-08:00

So here is Ms. Bonnie, Noel loves to talk about Ms. Bonnie and as you can see from the pictures she is so happy with her. I think Ms. Bonnie likes Noel just as much as Noel likes her : )

Noel has been practicing walking with a walker, I hear she has been doing quite well, we went to Kennedy Krieger in Baltimore, MD and she is getting AFO's for her legs because Noel tends to walk on her toes and is not steady. We go to get casts put on her legs next week and hope that these new molds will help in getting Noel up and mobile on her own.

My little indian princess all dressed up for Thanksgiving at school, she is sitting in her feeding chair/ wheelchair. Noel still has quite an issue with eating so she has to be restrained to eat, we are hoping to get something similar to this very soon as well it would be such a huge help to have this at home.

Noel's 2011- 2012 School Pics

Little Red Riding Hood

School so far

2011-11-15T08:55:00.000-08:00

Noel has been in school since the end of August, doing an awesome job. It was tough leaving her in the dorm for a few days here and there but I think she probably enjoyed not riding in the car/ bus all day. All the teachers and aides at her school just love her to pieces, I feel so comfortable at her school I dont want to leave I could just sit with her all day and watch her learn and grow.

Noel has more of a vocabulary now and it amazes me everyday. She is not crawling as much she walks along the furniture and even takes a step or two.

Just met with the medical equipment company yesterday to get Noel a stander and a feeder chair for the home so we can work on these things at home as well, feeding is such a complex issue with Noel that we need all the help we can get.

Life's Decisions

2011-09-03T12:17:00.000-07:00

Noel has officially started pre-school August 22, 2011, she started earlier this year too but that was only a month and was kinda a trial period. She seems to really love school and the staff there really seems to like her too.

Over the summer Noel has come a little further in her journey she is scooting a lot and very fast too she gets where she wants to be ASAP....... she will also now hold your hands and walk with you but not without assistance. She also is learning a few more words but its a lot of repeating.

We are still having the severe eating issues and I took her to Kennedy Krieger in Baltimore Maryland and they want to do an intensive feeding program with her for 2 months but financially our family can not afford for me to take off that amount of time. Ive had time saved up here and there but someone has always gotten sick or doctors appointments here and there and it just comes and goes.

So now its also Hurricane Season and thats my line of work ( disaster recovery ) so like a doctor needs sick patients and peanut butter needs jelly. We work - because of disasters. So Ive had to make a huge decision along with my husband to place Noel in the dorm at her school during the week. This breaks my heart = literally to pieces.

She is not even four years old yet, not only am I seperating her from her family, her twin sister I feel like im abandoning her. Will she remember me or will she think that the houseparents are her parents. Will she hate me for this later on? Will she even remember it? I know they treat the kids great there, no doubt in my mind she will do just fine there; she is also non verbal as in speaking and answering questions. You say " Hi Noel " she says " Hi Noel " I assume thats from the autisum. Parents everywhere have to make choices about there children everyday, I know Im not the only one, its been a rough go since day 1 though and sometimes I just wish it would get easier: its one hard decision after another.

and so life goes on.....lifes decisions

Chobani

2011-08-01T12:41:00.000-07:00

I wrote to Chobani two weeks ago and they are just awesome people over there. This is a yogurt that Noel just loves and I feel great feeding it to her because of all the nutritional benefits.

The breakdown:

Calories: 140
Total fat: 0
Cholesterol: 0
Total carbohydrate: 21g
Sugar: 19g
Protein 14g
Calcium: 15% (DV)
Gluten free and kosher, according to chobani.com

Chobani sent us 2 cases of yogurt directly to our house ( they will go fast ) at 2 at meal time. I'd love to show you a picture of Noel eating it, but she is quite a mess when she eats, she ends up with food all over her , me or whoever is feeding her, as well as tears the whole shabang.

Noel has issues eating period, she doesn't like anything in her mouth. Everything that we do feed Noel is pureed , how about that Whopper Meal pureed * gross *. Noel has an appointment with a feeding clinic this month, I'm excited but scared at the same time, this feeding clinic could be inpatient for her and that means she could stay there without me for up to 3 months. Brings back a rush of memories driving to and from Baltimore, Md when the triplets were born, but i know that she desperately needs this intense feeding clinic and Mommy is gonna do whats best, whether its writing a awesome company like Chobani or driving 2 hours one way to see my baby girl on the weekends.

I'd climb mountains to do what I need to do to give her the best shot at succeeding in life.

Wish List

2011-07-19T07:06:00.000-07:00

Noel had the chance to play with an iPad, I've seen them on tv and on the internet but never in person. Those things are pretty cool. They have lots of cause and effect games that are great for blind children, she was really having fun playing the piano.

It also had a lightbox, basically the screen lights up different colors and when put up to her face , i honestly think she can see maybe a little, it could just be my imagination I don't know but I'd really love to get Noel an iPad. We have lots of toys at home , toys with lights, toys that make noises but Noel doesn't play with them, this is something I can sit down and play with her. I hate seeing her just sitting on the couch rocking back and forth one of her many mannerisms, or eye pressing.

So my request is to ask for any donations towards an iPad for Noel I think this would really be helpful for her.

Last day of School

2011-06-09T10:58:00.000-07:00

Noel has had a great ending to the school year, I was a little scared and nervous on how it would all work out with the drive and how she would interact with other children besides her sisters, but she did AWESOME. I'm so proud of her, she lights up at this school she is happy, and the teachers, aids and everyone I've come across there so far seems to have a real passion for their jobs. Its hard for me to have one child that has a disability but for a teacher that is able to have the patience and dedicates their life to this, I give the utmost respect.

So in the above pictures, you see Noel dressed before we go to school, I just love the dress she has on , it was a hot and steamy day about 95 degrees and she was outside participating in Turkey Day where the whole school does things like Field Day at a regular school, some of the blind kids also did archery.... IMAGINE THAT......Noel brought me home a t-shirt with her hand and foot prints very cute. I never got her hand or foot prints when she and her sisters were in the hospital because they were all too critical and that was not a priority, but at least I have hers now.

The next picture is Noel's teacher Ms. Bowman I'm pretty sure I have spoken of her before here, she has been Noel's Insite teacher that has been coming out to our house for the past two years, and she is also Noel's pre-school teacher so I felt really good about sending her to school, Noel loves Ms. Bowman and I knew she would be comfortable with her. As you can see Noel is feeling Braille with Ms. Bowman she loves the feeling of Braille.

The 3rd picture is of Noel at gym time with another child from the school, Noel loves to rock back and forth so the swing is defiantly a treat for her. We don't have any parks or anything like that close to us, nor do we have a vehicle large enough to transport the whole family out so we don't get out much, but look how much she enjoyed the swing. : )

So today is the last day of school for her for the year she will start back in August, she will have Ms. Bowman again and go again for another full year of pre-school. Everyone at the school just loves her and she has made friends on the bus too, Alexandra loves to sit with her, she grabs her book bag and puts it under her seat for her and is like a mother hen to her. Hunter is her carpooling friend although most of the time Noel falls asleep on the ride.

Big thanks to a couple I met at Lowe's one day while we were shopping for new carpet before the girls came home from the hospital and happened to be that they had a blind child too '

* that was meant to be * Kelly & Dave aka Hunters parents.

They are helping me with picking up Noel from the bus and bringing her to my work, the traveling we have to do to get our children to the school they need to be in is hard and sometimes makes life a little more stressful but in the end

It's Worth It

WV School for the Deaf/Blind

2011-05-04T09:40:00.000-07:00

So in a few days my baby girl will be starting school. Its such a nervous but exciting time for me. Its taken quite a while; longer then I expected for her to get enrolled so she will only have about a month for 2010-2011 school year but then when school starts again in September she will restart preschool.

Its going to be quite a transition for all of us, having to get up at 4:30 am get myself ready for work, get Noel ready for school, have breakfast and out the door for the one hour and 20 min ride to the bus stop. Noel then gets on a bus for another 30-45 min to her school, so she will be spending a lot of time in the car ,luckily she doesn't mind the car she usually just falls asleep.

I'm excited I will get to spend this quality time with Noel everyday, I can chat with her one on one even though she really doesn't respond with much you can understand yet, but she tends to be more chatty when its just momma and her. We can sing her favorite songs * sheesh at 5:30 am wow I really need to stock up on the coffee. I think it will be a great bonding for both of us once we get use to it.

So wish us luck - 1st day pics will be coming.

Little switches that make a difference.

2011-04-06T12:31:00.000-07:00

Having three little ones under three years old is hard work; add in a disability to that and its even more difficult. Trying to switch things up in your marriage or relationship can sometimes be a major challenge balancing kids,work,bills, cleaning. Every week I try to let my husband know that I love him by doing things differently, he is the stay at home dad and he deals with the kids all day long. One day I will call him and say " Don't cook anything I will bring home dinner." We rarely get a night out to ourselves due to Noel and her feeding issues, but when we can grab and hour or two its nice to do something we both love and sometimes I just let my husband pick because he is the one that's cooped up all day long.

Old fashioned notes are nice too, I love to see a note left for me and he puts them in the places he knows I will go first. Our society is so electronic now so texts and emails seems like the easiest and we do text and email while I'm at work and its nice to see just say " I'm thinking about you "

Above all you have to make time for your spouse, If you don't relationships start to drift apart. Little switches, small changes make a huge difference in the way you see your mate.

“I wrote this blog post while participating in the SocialMoms and Cottonelle blogging program, for a gift card worth $25. For more information on how you can participate, click here.”

Busy Busy

2011-03-09T07:09:00.000-08:00

Well its been a while since ive posted. Im sorry life with the girls has gotten a little bit busier. Noel is now talking and repeating words. She is counting to 12 and starting full day preschool next month when she turns three. I can't wait to see the transformation in Noel, I know with her attending the WV School for the Blind and Deaf will help her tremendoulsy. Noel is not yet walking but I know once she gets to school and has the hands on everyday, it won't take long.

We still have the feeding issues with Noel, somedays are better then others but atleast we are moving in the right direction. I took her to a feeding clinic in Morgantown, WV and the doctors evaluated her, watched how I fed her and gave me different things I could try at home. So far we are eating some grind up foods and still Stage 2 baby food and pediasure ( that stuff sure is expensive ) I should have stock in that. Noel is just growin like a weed. This picture was taken in February.

Where does time go

2010-12-08T15:38:00.000-08:00

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

2010-10-02T14:52:00.000-07:00

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

2010-07-08T13:21:00.000-07:00

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

2010-06-15T15:00:00.000-07:00

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

2010-06-11T13:48:00.000-07:00

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

2010-06-10T15:48:00.000-07:00

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

2010-05-20T15:16:00.000-07:00

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

2010-05-11T14:42:00.000-07:00

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

2010-04-27T10:53:00.000-07:00

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

2010-04-22T10:12:00.000-07:00

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

2010-04-20T10:24:00.000-07:00

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

2010-04-15T15:00:00.000-07:00

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

2010-04-09T14:12:00.001-07:00

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

2010-03-30T14:20:00.000-07:00

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

2010-03-16T14:29:00.000-07:00

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.