Ride the bullet Nellie!!

Have you ever seen the Steven King movie Ride The Bullet? Basically it about a person having to make a choice between living and dying. Nellie was the person who fought to live. More than 50% of miscarriages occur because of chromosome abnormalities more than 50%!!!!!!!!! 5% of miscarriages are caused by single umbilical artery. Nellie had both of these things. She had more than a 55% higher risk of miscarriage. She had a greater chance of being a boy than survival. All I can think of is when the weather man says there is a 50% chance of rain. I compare it this way. If a drop of rain had fallen Nellie would have died, thank God the sun kept on shining!

Nellie fought to live, just as she fights to learn, to do the things they said she couldn't. She thrives, grows (A lot), learns. Everyday she shocks me with the knowledge she has gained. When she was almost three they did an IQ test that said hers was only 70! Boy, she proved them wrong.

I'm so proud of every accomplishment and every milestone. I wish sometimes I rode the bullet like she has. So many times things in life have looked so bleak. I've heard stories of people trying to end it or succeeding in their attempts and I think man, if only they knew Nellie. How could someone want to die when someone so little fought so hard to live? I'm reminded of a woman I met when I was pregnant with Devony and I won't name her but just say her baby was in my expecting club. This little baby was born so sick she spent months in the hospital. She could have died so many times. In fact there was a good chance she would die. That baby too rode the bullet. Everyday there are babies riding the bullet. They do the one thing so many are afraid to do...they live!!!!!

I suppose it sounds weird to compare babies to a Steven King movie, but in this case I must. If you haven't seen the movie watch it and you'll understand. I'm happy to say now I gladly throw my fears to the side and I too am riding the bullet and doing so with my arms up in the air, screaming with joy!

I know you love me, Nellie

I know you love me, Nellie. Though you may not want to hug and kiss. I see the love in your eyes when you look at me in the morning. When your tired at night and laying beside me the love emanates off of you and flows into me. Yes, I understand when you say love you too it is just an automatic response, but it's not the words that tell me how you feel. It's the way your face brightens when you get off the bus. It's when I am sad and you pat my leg though I know you don't like to touch. It's the way you surprise me some days and climb up in my lap. I know you love me, Nellie. I know this because you will put your arms around me for a few seconds when I say give me a hug, even if you face twists up in a look of disgust. Mommy knows hugs don't feel good for you. You don't have to tell me you love me Nellie. I can see it everyday. I don't care what I've read or what people say I know you and it's because of that I know their wrong. You feel love, and sadness, and anger, and yes even disappointment. Maybe you don't express them the same, but mommy always knows. I know when your sad cause your lips pokes out and you look down at the ground. I know when your angery cause your eyes get all squinty like your fathers. I know when your disappointed because you mope around. Yes, Nellie mommy don't need the words. In the end words are just that...words. They are not the smiles, the moments when you surprise me. They are not the feelings you invoke in others just by being near them. Words can't replace that instinct in you that tells when someone needs to laugh. Oh and how you make me laugh. I know you love me Nellie and I will always love you too, even if you don't understand when I say it you feel it the same way I do!

Ask and you shall recieve and have a little tact

I've had people writing to me asking exactly what is wrong with Janelle. She is what is known as multi disabled. The list is long and some of the conditions are not known by many people so I will try to make the list as simple as possible. Trust me I had a lot to learn with some of these terms too. I will list the symptoms of each condition as well in case anyone'schild has something similar.
Her first dx at 3 months was Nystagmus since then she's had three other eye conditions added.
Nystagmus is characterized by involuntary, repeated oscillations of one or both eyes, and the disorder often affects the nerves behind the eye and not the eye itself. Movements may be horizontal, vertical, circular, or a combination of various motions and speeds. Nystagmus affects people in varying ways and degrees. Although most affected people view objects as stationary because the brain is thought to make the necessary adjustments, many often have reduced acuity because of the challenge to maintain a fixed focus. People with nystagmus tend to see objects in lower contrast, and many experience problems with depth perception that affect balance and coordination. Some of those affected with the disorder tilt their heads or display nodding to compensate for the impairment or symptoms.
You may notice in older pics of Janelle she held her head to the left side.
http://www.visionrx.com/library/enc/enc_nystagmus.asp


Diagnoses number two was delays in all areas. She began receiving speech, OT, and vision at home.
In Janelle' case her OT was because she didn't hit any of her milestones for about 6 months after she should. When she started ot she was pretty much on a newborn level for many skills. Speech delays were noticed because he didn't cry, smile, wave, babble etc and vision was for her visual impairments.

Third was a feeding delay and severe eczema, and SPD
She didn't eat solid food until she was almost 2!!!! We had a special way of putting the spoon in her mouth to get her to take some baby food. She cried whenever she was forced to touch anything gooey like shaving cream, glue, loved light, resisted touch etc etc. She also had eczema so bad her skin would bleed.

fourth tight right foot adductor muscle
She stands on the side of her foot. It was at this point she was also dx'ed with bow legs which turned out to be knock knees.

fifth severe asthma
She's had 3 major attacks in the last year and a half she had her adenoids out in the spring but it didn't help.

sixth more delays and hearing loss this is when she got a private aide
She now receives PT as well because she doesn't jump off things, has trouble on stairs . The aide helps her to not make good her escape and to give her one on one for teacher led activities.

seventh PDD-NOS (Likely to be changed)
This is a new DX and she may be moved into a different autism spectrum category

And now Chromosome abnormalities. Which in the end caused everything.
The chromosome abnormalities doesn't have a name. Her genetic doc put it this way she has extra on chromosome 15 and missing part of chromosome 19. He said it is rare to have both of these at the same time. Not unheard of just rare.

I'm sure there have been other things I have missed because there have been things they said she had that turned out not to be the case. This list may seem long and people may say how did you deal with so much. To that I say it has been a slow process. These things were not diagnosed all at once. Itwas one thing after another over almost four years. At one point I asked is she ever going to get a negative test?
I also want to add that people have been cautious about asking me questions about Janelle. If we are in public you can tell someone wants to ask something, but they don't. I have also had friends apologize for asking me about her conditions. Please don't feel like you can't ask or that it's rude. I want people to ask. I want people to understand what is wrong with her and not fear it. Trust me after people spend a little while with Nellie they forget all about the fact she is disabled. What I do find offensive is when people make comments. The worst was when she was a baby and people would look at her and say oh my what's wrong with her eyes with that shocked disgusted sound in their voice. Please have a little tact. Ask instead I notice her eyes shake what causes that? In other words think before you word your sentences. If my younger children can do this so can adults. For example we saw a young girl who had a bone condition on our last trip to the hospital and my six year old did notice this girl immediately. Her response was mommy was that little girl born that way? I say yes I believe she was. Emma says mommy that chair looks like a lot of fun do you think she races in it? I said I don't know go ahead and ask her. Being shy Emma didn't.Never once did they make the little girl feel like a side show.
There are proper ways to approach the parent of a disabled child. If you're not sure the right way imagine that child was yours and think of how you would want someone to ask. I guess in a way it's easier for me having been in those shoes.
I'll finish this blog today with one simple request. Teach your children from a young age about disabilities. Try to put them in situations where they will be exposed to people who have disabilities. Young children may embarrass you at first and ask some outlandish questions or even show their shock. After talking to other disabled adults I have learned when children do these things it's not hurtful to them. In fact many will talk to the children and explain things in a way they'll understand. It's by teaching your children that they learn understanding and acceptance!

An open letter to Nickelodeon and Disney

To whom it may concern:

Thank you so much for your programming (Even if I swear it has subliminal messages to children). It is because of you I get my little bit of sanity during the day, but also because of you I am driven insane on a daily bases with your montages of songs which are sang out of tune by five children daily.
Yes Phinias and Ferb have become a staple in our home, almost at one time overtaking Sponge bob. I have to wonder who would win in a cage match Gary or Perry. Gary is slow, but then again he is the quiet type and everyone knows you have to watch the quit ones. I also am curious how exactly a pineapple ended up under the sea and why a sponge would want to live in one. Oh the things that boggle a parents mind.
Back to the point of this letter. It is during your programming when I can sit back and not wonder what Nellie is going to dump on my floor. I do have one request please do away with commercials. It is during the ads Nellie turns wearing her wide smile and I have to watch carefully to see what her mind is thinking of. Usually this is the point I have to duck to avoid a flying toy, or grab a bottle of Pepsi just before it becomes a puddle in the middle of my living room rug. Yes, even bathroom breaks are avoided at all costs during your shows, which can at times lead to another mess for me to clean.
Mine is a simple request please get rid of the ads or simply have all ads starring your addictive characters. Perhaps at the very least you can add a subliminal message that says use the bathroom, toys aren't for throwing, please don't ruin the rug. With that stated I plan to send you a six hour video of my children singing all your catchy tunes, ENJOY!!!!

Sincerely,
A very very tired Mama

Janelle's- Amazing


The morning cold and raining,
dark before the dawn could come
How long in twilight waiting
longing for the rising sun
ohoh ohoh Oh ooh

You came like crashing thunder
breaking through these walls of stone
You came with wide eyed wonder
into all this great unknown
ohoh ohoh Ohoooh Oohh

Hush now don't you be afraid
I promise you I'll always stay
I'll never be that far away
I'm right here with you

You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...
You are

You came from heaven shining
Breath of God still flows from fresh on you
The beating heart inside me
Crumbled at this one so new
ohoh ohoh Oooh ooohhh

No matter where or how far you wander
For a thousand years or longer
I will always be there for you
Right here with you

[Chorus]
You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...

I hope your tears are few and fast
I hope your dreams come true at last
I hope you find love that goes on and on and on and on and on
I hope you wish on every star
I hope you never fall too far
I hope this world can see how wonderful you are

You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing...

You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...
You are
ooooooo

WOW!!!!!!! What a fitting song for my Nellie. More so since she shares the singers name!

I can lift the world

I know I can lift the world, I've done it. The weight has laid on my shoulders so many times I'm surprised it didn't leave permanent dents. No I'm not strong to have held this weight, nor brave. I am just a mother. I have felt the bitter tears of fear as I thought about Nellie's future. I've mourned many times for what she could have been, but then I think my God, she is already so wonderful. Last night while talking to a friend I said if they said tomorrow they had a cure right away I'd say great let's do this thing, but then I'd stop and say will this cure change her personality, who she is? If the answer would be yes I wouldn't be so quick to get in line.
I have a lot of fears for Nellie's future so bravery is not quite the word I would use for myself. I fear how the world is going to view her. I fear what will become of her when I am gone. I would never rest in peace until I knew she was safe and happy, just as I wouldn't unless I was sure of the same thing with my other children. No, I'm not brave. I'm still a scared little girl deep down who many times has ran into my grandma's arms for comfort when the doctors said something that really struck a cord with me. I'm the same little girl who wants to hide from it all every now and then, but I can't. I know I have to fight for her. If I don't she'd become lost in the system. I refuse to allow her to become anything less than what she can be.
Strength is another quality people have said I have. I wouldn't call it that. I just do what I have to, what any other parent would have. When the doctors told me answers may never come I wouldn't accept it. I dealt with family and friends saying I was looking for something wrong knowing that in fact wasn't the case. There had always been something wrong I simply wouldn't give up the hunt. Throughout history if people had given up the hunt there wouldn't be antibiotics, electricity, America. Just as these things that were hunted for are great so Nellie will be too.
I'm under no delusion that Nellie will be a rocket scientist, she won't be. In fact what her future holds is so uncertain sometimes I hate to think about it. I do know however she will become something great. She will be a great, loving person. She will bring great joy to those around her and to be honest that fills me with more pride than if she were to be elected President. Whatever Nellie becomes in life it won't be because of my strength or my bravery it will be because of my love and her strength and her bravery.
This child has been through so much. She's been poked and prodded for nearly four years now. She sees doctor after doctor and never cries. She sees children do things she can't, yet never complains. In my opinion she is stronger than any vice ever created and braver than an explorer that ever tackled the unknown. She's my Nell Bells and I will forever be in awe of her.

A detour in the road

There was a detour in the road of Nellie's journey. I guess in a way that is why it's been so long since I posted. We have gone through a battery of tests from Genetic doctors to developmental pediatricians. I guess since she was born I have been searching diligently for answers. I have crossed every bridge and walked barefoot down every rocky road of the medical society I could. I needed to know, being a person who hates a mystery. I was the kid who pulled back the corners of Christmas gifts on Christmas Eve just to see what was inside. So in a way Nellie was my Christmas gift. The best Christmas gift ever, yet I needed to know what was inside. I had to find out what was hidden below the surface. Today I found out.
She has something wrong with her DNA (Could be chromosomes after the doctor started talking his voice droned out into an annoying buzz). Anyway he has her listed as Clinically uncertain and can't find much literature on what is wrong with her so we will wait and see I guess.

I cried again. I cry a lot these days when it comes to Nellie. I mourn what could have been. I ask what I could have done. In the end I know Nellie is who she is because God made her that way. I was IM'ing with a friend a little while ago and I hope she doesn't mind I share our conversation as it says it all about how I feel about Nellie.



12:13pmMe

the one thing we know at this point is everything wrong with her now has one answer

autism visiual impairment hearing loss everything

12:13pmCandi
would you mind if i have your family added to a prayer chain?

12:14pmMe
and the list is long

12:15pmCandi
omg it's been a hard week for people conected to me :(

12:15pmMe
This isn't so hard just hard to hear if anything I should be praising God for the answers I begged him for

you know someone once asked me how I could believe in a God who would make children like Nellie

12:16pmCandi
really?

12:16pmMe
and I say how could I not believe in a God that would make such a loving, sweet little girl

A God that chose me because he knew I would do for her everything I could and love her harder than I have ever loved anything

12:18pmCandi
omg you've got me crying...i don't even know nellie but when you look at her you see a beautiful, sweet, kind-hearted little angel...she was put here for a reason

12:18pmMe
I favor Nellie, it's not just me everyone in this house favors her everyone who meets her favors her

her teacher even said nellie was her favorite

that little girl is destined for great things she's got this magnetism about her that makes everyone want to love her

12:19pmCandi
i wish i could meet her...and you and the others too

12:19pmMe
she doesn't hug or kiss but she just smiles and it's like omg that smile is for me

thanks Candi

we'd love to meet you too

one day I'm sure

12:20pmCandi
i'm trying to read about chromosonal anomolies (sp?)...i think nellie is a miracle

12:21pmMe
it's not so much the chromosome it's the dna in them or something I have no idea how to explain it after not getting better he just sounded like an annoying buzz lol

12:22pmCandi
i've read that 139 in 140 fetus' with a missing chromoson spontaneously abort....nellie is meant to be here

12:23pmMe
she has a single umblical vessel too which has a greater risk of miscarriage

she only weighed 5'15 full term

12:24pmCandi
nellie IS favored...God CHOSE her to survive!

12:25pmMe
you know I will say one thing for my grandpa that he did in the very end he brought me back to God and he was the one who always said Nellie is just fine and I'd say grandpa the doctors said this or that and he'd look me straight in the eyes and say Nellie is just fine

and I know for the rest of her life he will be on her shoulder just as he was always with her when he was alive

12:26pmCandi
and she is...she's exactly the way God intended her to be

12:27pmMe
she has an abundance of prayers said for her all the time and she loves church even if she doesn't fully understand it she is a friend of God

12:28pmCandi
that's so great to hear

12:30pmMe
lol I was trying to explain chromosome to the kids and emma says I think I only have two of those so nellies ok lol

emma explains it all

12:35pmCandi
awww, cutie emma

12:57pmMe
ok her regular doc just called they have her listed as clinically uncertain because whatever all this is is very rare and the genetic doctor wrote there isn't much literature

1:28pmMe
hehehehehe wanna hear the course of treatment?

1:28pmCandi
sure, lol

1:29pmMe
what she's getting already

lol the doc just don't know lol

she's making his butt work

1:37pmCandi
i asked my friend nicole to pray and explained the rarity of it to her...she says that nellie was put on earth to teach people about this syndrome

1:41pmMe
In a way I think Nellie was put her to make us all see that no matter what we need to forget about the bad things in life and just smile :)

1:42pmCandi
yup :D


So to finish todays blog I just want to say smile for Nellie. I figure if she can smile through everything she's been through what right do we have to frown?