My how time flys

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

 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

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

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

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

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

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