The appointment I fear the most

So Nellie is going to go to a developmental ped in the next few weeks. It's the one appointment I've been dreading. I was hoping she'd just get better. That there was nothing really wrong and she would just catch up. That hasn't happened.
She has begun to talk a little more and I can even understand her at times. She still doesn't ask for things, but we had a huge breakthrough yesterday. We asked her if she wanted to go outside and she said yes! I know it sounds silly to be so excited about something so simple, but she's never said yes in response to a question before. I'm hoping this is a sign of more to come.
Recently we found out what her special skill is...songs. She can hear a song once and know it word for word. Of course now she walks around singing all the time. I have never heard so many Beatles songs from a three year old.

I wanna Hoad da baby

Nellie has taken a liking to her new baby sister. Every time the baby makes a sound she says : My my my. The holds out her hands saying I wanna hoad da baby. If I don't instantly help her to do so she throws a fit! On one hand I'm glad she likes the baby on the other I think Nellie thinks she's a toy. Her new favorite thing is hanging off the side of the crib.

I guess it could be worse, she bites her other siblings.

Nellie's Getting an aide

I guess in a way it's a kind of funny reason she is getting a one on one aide at school. It's something I have known a long time and experienced first hand with her....Janelle is a danger to herself! The girl may be behind other kids in many ways, but running, jumping, climbing, and generally getting into everything isn't one of her weaknesses. In fact she is the first one of my children I have used a child restraint harness on (Nice way of saying a leash).
Nellie has no fear and doesn't understand when we express something is dangerous so she runs of large bodies of water, into roads etc etc. At school she has taken to running out of the classroom to the point the must keep the doors closed. We learned this same lesson at doctors offices. You now where they have the rooms with the pull down and they pop open. Yep those are Nellie's favorite. She also has jumped of the top of a playground at school and can't tell people when she is hurt, or I take that back she can scream in pain, she just can't tell us where it hurts.
We have had many scares with her. Once she had eight stitches in her tiny finger. She moved just a little faster than me and got it stuck in a can. She has taken falls off furniture, down stairs etc. Her physical therapist noted the danger of Nellie on stairs. It's scary at times, but I have learned to be right on top of her. The only thing that stinks is I will only leave her with a select few people who I know will watch her closely and because of that babysitters are hard to come by.
I'm really hoping this aide will make her day at school safer, but in all reality why can't I have one for her at home?

So Nellie got another dx added to her list. She has been diagnosed with asthma. Lots of fun :( Truth be told we kind of knew it was coming, since she'd had to be nebulized a few times in the past. It seems her trigger is upper respiratory infections.
On a side note she is doing better in school, other than not eating her lunch. She has begun to join in with the music and dance at circle time. I'm looking forward to her upcoming open house so I can see how she interacts in the classroom setting. I also am anxious to meet her therapist as I have been so use to having her therapy at home and now don't get daily updates on her progress. I know she's talking more at home, but I guess not so much at school.
Her afternoon bus driver has been trying so hard to get her to talk to him and the bus aide. It's about a half hour drive and Nellie stays silent. I told them she likes to sing and maybe she would do that, but nope she just stayed mum. Her teacher said she'll talk and sing to herself in class so at least someone other than us is hearing her cute little voice.
I'm thinking of hiring someone to dress up as Sponge Bob to go to her class. She absolutely loves him. She'll either A. Have a long conversation about Bikini Bottom and the people who live there or B. Freak out and run away crying at a character she knows should only live in the TV.

Nellie and the bus

Nellie has found she loves the bus now. She goes outside and stands looking in the direction her bus comes from. She says: Where bus go? I say: It's coming. She stands a moment longer: Where bus go? Me: It'll be here soon. This conversation goes on for five or ten minutes before the bus pulls up. She hears it before she sees it. Nellie: Bus. Me: There it is.
Nellie climbs the stairs always stopping to look back at me. It's as if she is waiting for me to go with her. She climbs into her car seat (The bus aide can't lift her. Most people can't). Her sisters run along the side of the bus waving as it pulls off and Nellie just stares at them. I know she'd rather be going on their bus with them, but that will be a few more years.
I'm so proud she's been doing so well about going to school. It's been harder on me than her. To be honest I wish I was on that bus beside her, but as I've been told it was time for her to go off and learn.

It's been crazy here

We had the new baby and Nellie started school. I was suprised at how well she has been doing. Her teacher and I talked the other day and she said Nellie still won't play with other kids or show any type of connection with her teachers. I explained that she'd been with her therapist three years and had no true connection with them either.
On top of everything else going on with Nellie I realize now she has a bit of a weight issue. Her doctor mentioned it, but I was in denial, seeing as I am the inabler. I seen nothing wrong with giving her my chocolate shakes, french fries or anything else my pregnant self was craving. So we decided as a family we are all changing our eating habits.
Oh we did get some good news. Nellie's teacher said she is starting to talk more and she is understanding her better. In a way I'll miss the jargon, it was a little cute, but it will be nice to have a conversation with her and see what's been on her mind all this time.

Nellie's MRI

We took Nellie to Children's Hospital on Thursday to get her MRI. The staff there is wonderful and I can't say enough about the great treatment she recieved. After five hours she came out a bit stoned still from the sadation, but I'm not sure she even knew what happened. She wanted to stop and play in the waiting room.
She was still so out of it that it took over an hour after sadation for her to say anything. My sister handed her half and ice cream and she licked the wrapper clean held it up and said all done. Poor baby was starved for 12 hours before the MRI. 12 Hours may not seem like much but to Nellie it was weeks I'm sure.
We'll know the results on Tuesday and it seems like that day will never come. I'll post more when I know more.

More to think about

Janelle's speech teacher took a look at her hearing test results and informed me she feels her hearing is worse than low normal. So now I worry about her hearing on top of her vision. I wonder sometimes what her life is going to be like. Is she going to see the subtle beauty in the petal of a flower, or her the sound of a bird singing in the distance?
I pray her senses last long enough or don't get any worse so she will at least have the memories of the world I have exposed her to. I watched her as she slept last night. To look at her a person would never know there is something wrong. She's such a sweet, loving girl. It seems unfair that life has dealt her this hand, yet I know like everyone else she has a purpose in life and only time will tell what that is.

The dreaded appointment

Today was Nellie's appointment with the neurologist. He seemed like a great doctor. Very down to business, but checked everything and asked a lot of questions. He measured her spots and only four were the right size. However since they have been appearing so rapidly he is listing her as probable NF1 until after her MRI next week or in six months when the spots grow and or multiply.
Half of me is sad he couldn't tell me difinitivly today, but I understand. I've waited three years for answers......that's why I want them NOW!!!!! Can you tell I have no patience?

Tomorrow is the big day

We go to the neurologist. I have waited it seems forever to get Nellie looked at by a Neurologist and now half of me wants to skip out on the appointment. It's like maybe if I don't hear anything it won't be true. I know there is a chance he will make us wait for a diagnoses, but the MRI scares me more than anything. In a way I want them to do it tomorrow to ease my mind and in another way I'm scared of that too.
Janelle had another bad night last night. She is waking up more frequently crying and I don't know why. It's been a while since I have slept through the night as she wakes me up with the slightest noise she makes. Add to that me being nine months pregnant and I am a walking zombie.
Janelle's TVI (teacher of the visually impared) told me her teacher is going to be a woman brand new to the school. I am excited about this a fresh, young teacher who is still very much in love with her job. I hope everyone is right and school is going to help dramatically.
Oh and a funny side note. The other night our giant white cat was laying on Nellie's legs when she was sleeping and Nellie woke up and said "Get off of me pee pee kitty". She calls all our cats Pee Pee cause we have one named Fee fee. Anyway I thought it was a cute story since this was one of her first full sentences.

It all started so long ago

I think I knew from they day Nellie was born she was different. Janelle came into the world at a tiny weight of 15 lb.'s 15 oz.'s, much smaller than my other four children. She had a single vessel umbilical artery which went unnoticed until she was born, but otherwise seemed healthy at the time. I remember looking at her in the hospital and just feeling something was off.
Nellie was a good baby. She never cried, NEVER!!! We would feed her every four hours and check her diaper all the time because otherwise we wouldn't have known when she needed something. Everyone said she's such a good baby.
At three months Janelle decided to give me the scare of my life. She gasped and throw up her arms and legs. I practically threw her at my husband telling him to fix her. My mother quickly rushed over and held Janelle who after ten minutes was still groggy and drooling. We took her to the ER and had to follow up with the doc. We were later told this was acid reflux, something I never agreed with. The gasping spells happened a few more times while she was an infant. It was to the point that she did it to our sitter who then refused to watch her.
At five months Janelle was diagnosed with nystagmus (shaking eyes). I remember crying when the eye doctor said she may be legally blind, thankfully she isn't. She is listed as visually impared though.
It was after reading up on nystagmus I found out we needed to call in Early intervention. At this point Nellie was about 8 months old. I knew she wasn't hitting her milestones like other kids, but already having four children besides her I knew all babies were different.
After weeks of evaluations it turned out she was further behind than I could have ever imagined. At ten months she began to receive speech, occupational therapy, and a vision teacher. She was also diagnosed with a feeding delay.
Fast forward now two years. Janelle is still receiving a lot of services and was just switched over to our school districts special education. She was scored at having an IQ of 70, and is falling so far behind on everything she must now start a special education pre-school at two.
I was so upset with everything I finally knelt down and prayed. I asked God to give me some answers on my sweet little girl and he just may have. In the past month and a half Janelle has been getting cafe-au-latte spots all over her. This may be the clue to everything. She goes to a neurologist on August 11th to be tested for neurofibromatosis. Though it's terrible to think your child has something wrong, I've always known. It's time now I know what it is and what our next steps should be.
Keep Nellie in your thoughts as she goes to be checked. Please think of our family and that we may finally know what is causing her issues. I'll keep this blog updated as Nellie's journey continues.