12/2/11

School Pictures

 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

11/15/11

School so far

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.


9/3/11

Life's Decisions

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



8/1/11

Chobani


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.


7/19/11

Wish List

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.

6/9/11

Last day of School




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

5/4/11

WV School for the Deaf/Blind

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.

4/6/11

Little switches that make a difference.

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.”

3/9/11

Busy Busy

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.