My Little Candy Cane

So we were stuck home in a blizzard this past weekend ( very unusual ) for us , so I started snapping a few pics of the girls. I actually got Noel in a happy mood and smiling.

Attempting * I think * to crawl

Kendall tryin to take Miss Noel's bottle

Well this morning as I was leaving for another day at work, I saw Noel laying on the floor - legs behind her kinda doing a kicking motion - she was smiling. This is how her sister Kendall started to learn how to crawl, so maybe she is attempting. I cant wait to get home tonite and play with her and continue trying to teach her.

We stopped services with Birth to Three for a few months due to the flu season and cold weather but I know Noel needs these services, so ive made it very clear to her OT, DS, PT that any signs of sickness from yourself or kids - please cancel. The girls have been so much healthier since we stopped services but now is a critical time for Noel and I want her to take in as much as she can, as well as myself and husband so we can be the best advocates for her as she continues to grow.

Stares

I guess you can say ive been guilty of this too - stareing at a person or child that we see as not normal - blind, deaf , handicapped in some way. Now that i have a child like that it hurts me to see people stare.

Yesterday i was at my regular ob appointment and in walked a mother and her daughter whom was blind ( maybe 14-16 years old ) her mom holding her hand the whole time and telling her where to go, she had the traditional black sunglasses on. The stares people give her - and when the receptionist asked " Her name " to the mother im thinking why didnt she ask the daughter just because she is blind doesnt mean she cant answer a question.

Anyways as i sat there listening to this mom fill out the paper work for her daughter, her daughter was concerned about her mom going back with her to see the doctor - she wanted to ask the doctor something but didnt want her mom to get mad, all i could think about was it was probably birth control or something, she kept telling her mom " i want to ask the doctor something but i dont want you to get mad at me mom - do you promise you wont get mad? My heart melted - wow , this is what my mom probably went thru and what I will go thru too when my daughters get to that age.

The stares really bother me, and like i said before Ive been guilty of this too but i dont want this for my child.

Bumpy Books

So last night after I fed the girls , I was sitting on the floor with Noel, she was in a spunky little mood, its so nice to see her smile and giggle, I had her sit up and gave her a braille book. I ran her fingers across the bumps a few times and then stopped, she continued to run her hands across the bumps all by herself and open the pages, it was so nice to see her do this. Noel feels all sides of a toy, book etc - she was exploring this new book she had gotten " Yummy, Yucky"

She only played with the book for a few minutes and then she got tired of it - so I layed her on the floor and tickled her and she started laughing and giggling. I just love these moments

Its not an Easy life BUT ITS..... MY LIFE!!!!!

Well I think im doing a lil better now - its the end of the week and Im taking it all in. Yes , my baby girl is blind, i probably knew that before this but didnt want to fully believe that - keeping the faith I suppose is what they call it.

Its not going to be an easy to road, but we have help from the Romney School for the Blind , they are helping us some with teaching us about Noel and the different things she does , and we are going to have an Occupational Therapist start to come in and work with Noel, so hopefully things will start to improve.

I feel like I neglect Noel at times, you would never even know she is there unless she is very hungry or has a dirty diaper and then she gets fussy , but she is very content just sitting in her bouncy or laying on the floor, but as soon as I walk in the door from a long day at work and my sighted daughter see's me - she wants my attention. Being they are twins one is sighted and one is not - its hard. I know Noel hears my voice when I come home and Im sure she is happy with that but I want to be able to juggle both of them, read the bumpy books to her, let her feel them, let her explore her surroundings, all while trying to catch up with her sister who is into everything because she is much more advanced due to her having the sight to see what she wants and go after it. That part really tears me apart.

We dont have close family by that can come and help us, so it makes it much harder.

Like I said before. Its not an Easy life - But its ...... MY life

Latest Dr Appointment -No Good News

Well yesterday we saw Dr Handa ( at Johns Hopkins ) for a check up. It was not good news for Noel. Her retinas have completley detached, when I asked the DR whether this meant that Noel is blind - he said " Yes "

Will write more later - Mommy is pretty upset : (

Miss Alex ( OT )

Well we had our evaluation yesterday from Miss Alex - it was pretty lengthy but all in all good news. She feels that we should get a neurologist to check Noel for problems, Noel does certain things that a baby who could see wouldnt do, she moves her legs in and out, presses her eyes ( which we know is pretty normal ) for a child that has Visual Impairments, and she rocks a lot, whether its her brain telling her to do this or its just a behavioral problem due to her vision is what the neurologist would be able to tell us.

So next week i plan on calling her pediatrician and asking for a referral to see him, so we can gain some more insight into what Noel is thinking , doing etc......

Miss Alex had some light up toys that Noel seemed to catch a glimpse of - so there is definatlety the possiblity that she has light perception and thats good, we need to work on some tracking activities to see if she will try to track with her one ( what we call good eye ) we know she is definatley blind in her right eye.

So practice we will this weekend, among other things, Noel is recovering from Roseola , and double ear infections so were trying to take it easy on her until she is up to par.

OT visit today

Today a occupational therapist is supposed to come evaluate Noel. This will be really good for her and us. She can give us insight into what to do for Noel to have her explore more textures and not be so defensive towards new things.

I tried Mac and cheese last night with her, you should have seen the look on her face, she kept it in her mouth but wouldnt chew it, so we traded that in for Hearty vegetable stew, which she loves. With her twin sister Kendall I can show her chew by moving my mouth, but with Noel she doesnt get it yet.

Comments

"God gives special children to special people"
"God doesn't give us more than we can handle"
"It could be worse"

"Aww she is so sleepy "
These are some of the comments people make to me....ALL the time.

I did not ask to be special. I am very, very aware that "it could be worse." I am SO tired of these statements. I know people say them because...they don't know what else to say and they feel the need to fill the quiet void with random canned phrases.

"Its just her eyes." Are you kidding me? They have NO idea that my child is delayed because she cannot see the toy to roll over. Why do "normal" babies crawl? Because they want something. Noel isn't crawling, scooting,etc. because she does not know what is there.

The people who have helped me the most are those who have been the ones to not say a word. They know that they are not in my shoes. They don't try to be. They just listen, be there, and allow me to feel what I am feeling. I must process this. Each day is a journey. Each day there is something new.

Babbling

Last nite Noel was in her crib and we were goin to bed, well she is over there just babbling away. When i say babbling ( i mean ) making noises , sometimes she sounds like a tiger growling and moaning. I try to repeat Mama,Dada,Baba,Gaga but she wont repeat them.

I started putting her hands on my lips as I talk so she can feel the movement of my lips and that im speaking or making sounds. She seems to like that , as she smiles whenever she touches my face.

Her Vision teacher ( Miss Karen ) should be coming today, Im so excited to tell her that Ive learned the 1st ten letters of the Braille alphabet. WooooHooo - this stuff isnt easy though. I dont know them by touch but by looking at them, its a step atleast this way I will be able to help Noel with her homework etc.

Miss Karen

Miss Karen came again yesterday and played with Noel. The girls Developmental Specialist was there too at the same time, so this was really good , she told her about different things in blind children, braille, techniques, etc. Now hopefully everyone will be on the same page in helping Noel.

Noel was really happy yesterday, we practiced sitting up ( by herself ) and singing row row row your boat - Noel loves to rock back and forth so this was really fun for her.

All in all yesterday was a good day for everyone.

Appt with Vision Teacher

So Mrs. Karen came yesterday, she comes for an hour, I only got to see her for 15 min because I get off later, but she leaves me a sheet to tell me what to work with Noel on and how she did. Mrs. Karen says Noel has visual curiosity, we are not sure about light perception and so on. She said its great that Noel doesnt mind touching the grass, with her feet and hands, a lot of kids with visual impairments are tactile challenged, so far so good with Noel, she doesnt really care for feathery things but we are working on it. Tonite I think I will make some spaghetti and let her put her hands in the bowl and play with it.

Also we got our package from Seedlings, they sent Noel a book, what looks like a dog toy rubber knobby ball, a book for Paul and I to teach us Braille- looks very complicated, and a few other books to help incorporate different things for Noel.

Karen our vision teacher is coming today

Raising a visually impaired child is very different then a sighted child. Noel can't see the things that her twin does, she doesnt react like her sister does. Noel loves music and to touch different textures, this teaches her about her surroundings.

Today Noel has an appointment with the vision teacher Karen. She works for the School for the Blind and is a preschool teacher there. She comes to our home once a week and works with Noel and us to teach different things, show us stuff we can do for Noel to make her more independent.

Noel was born at 23 weeks - 1 lb 5 oz, she spent 7 months in the Neonatal Intensive Care Unit ( NICU ) receiving treatment for a range of issues from PDA ( Patent Ductus Arterious ) heart valve, NEC ( Necrotizing Enterocolilitis ) death of intestinal tissue a life threatning disease, IVH brain hemmorages.

Noel beat the odds of all these disease's. Being born so early, so tiny, so fragile, she developed ROP Stage 5 w/ plus disease ( retinopathy of prematurity ) a disease of the retina's. ROP occurs when abnormal blood vessels grow and spread throughout the retina, the tissue that lines the back of the eye. These abnormal blood vessels are fragile and can leak, scarring the retina and pulling it out of position. This causes a retinal detachment. Retinal detachment is the main cause of visual impairment and blindness in ROP.

Noel has had several eye surgeries in her 16 months of life, the last one done in Detroit, Michigan by Dr Trese ( well known opthamologist ) We traveled 900 miles one way too see this specialist who performed yet another Vitrectomy on Noel, his news was not good. The surgeries are not working. Noel has had all of her previous surgeries at Johns Hopkins Hospital in Baltimore, MD.

The stemcell treatment could give Noel a chance to see,we are willing to take her anywhere in the world to give her the best possible chance.

Previous Patients

http://www.stemcellschina.com/index.php/en/rop-tatyana1


http://www.stemcellschina.com/index.php/en/ropshirdesh

StemCells

Most cells in the body have a specific
function in particular organs, such as the
liver, skin or brain. Stem cells are
relatively undifferentiated and still have the
ability to develop into different types of
cells to exert different functions.
A stem cell's most notable characteristic is
its ability to reproduce a completely new,
normal, and even younger cell. As a result,
people can use their own or someone else’s
stem cells, or stem cell-derived tissues or
organs, to replace ill or aging tissues or
organs. This permits treatment of a wide
range of diseases and injuries, many of
which cannot be treated with traditional
medical method

Besides reproducing new cells and
providing cell replacement, an equally
important function of the stem cells is to
provide the body with cell factors to help to
encourage the following functions:
1. Immune regulation
2. Reducing cell death
3. Stimulation the differentiation of the
patient’s own stem cells
4. Neo-angiogenesis (the growth of
blood vessels resulting in increased
blood flow to damaged areas)
5. Reducing scarring
6. Improving the effective conduction of
intercellular electrical signals and
transduction