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Not so Happy Holidays

Noel had her first ever seizure on December 10 , 2013. This was one of the scariest times of my life, she was unresponsive and very pale.I scooped her up and put her in the car off to the hospital we went.

I ran inside with her limp body laying over my shoulder and yelled for someone to help me, the nurse came running and took her from me and ran her back to the trauma room. As Noel laid there my worst fears were going thru my mind, please God just help this child she has been thru so much already. The doctors decided to intubate her so she could breath and send her to Children's Hospital in DC.

Here we sit going on day five in the pediatric intensive care unit, Noel was diagnosed with RSV , she has been running fevers of 104 to 105 daily and on 100% oxygen. As of  now we don't know when we will be going home as Noel is very sick. We pray that we can be home by Christmas so that we can all be together as a family.

Please keep Noel in your prayers

Its been a while, but Im back

I haven't been around in a while, believe it or not I'm one busy lady. I'm so happy Noel has started back to school and so is she.

  

We have also added a baby sister to the family as well 

Meet Faith 

I promise to be back more and update life- we are getting into a good routine and adjusting, its still hectic but its our life as we know it. 

And they say .....

What doesn't kill you makes you stronger right ? Sometimes I wish it would just kill me. If this was so.. I should be the strongest person on the planet. I should be so trim and fit and no feelings whatsoever, but I do. By all means my life is not the worst my children are healthy they have there issues and this is sorta hard because I have made it that way at times by my own decisions, other things are not my fault they just seem to keep flying at me like I'm in a batting cage trying to dodge balls, but I keep getting smacked one after another to the point I don't know If i can keep getting up. 


So where did that saying come from anyways? Some person who has it all ?

Would money make my life easier - maybe a little would it make all my problems go away absolutely not. 


Would having the perfect mate make my life easier - maybe it would make my stress level a little bit more manageable if I felt like someone was there to back me up and catch me when I fall but not everyone is perfect. 


Would having a huge family that understands whats going on in my life and that didn't seemed so consumed with their own lives help. I think so..... I feel all alone and I feel like I'm failing my daughter once again and that my family is failing me.


Thank you Insurance company for denying my daughter a feeding chair..


Thank you Secondary insurance for denying my daughter a feeding chair. 


Thanks to a program I applied to for kids with autism and special needs for denying my daughter an iPad when she clearly had enough votes but it went to a FRIEND of the owners site. * But thank you for giving away iPad  to kids that need them * 


Thank you State of WV and SSI for telling me I make too much money - anything over working at McDonald's is too much. 


Sometimes you just get tired of asking and seeking for help, people have abused the system so much that when a real child, adult or elderly person really need it. THEY DON"T GET IT. 


My plea - if anyone knows of any resources please point me in the right direction. I think I have tried all avenues but you never know. There isn't anything I won't do to give my daughter EVERYTHING. 


I have heard of grants to get sensory toys or a sensory playground or room , technology equipment etc.

You can email me directly here  Jessica Marinaccio

Snuck up on me again

Monday is here again, how does time fly while your having fun but crawl when your not. I miss Noel all week long while she is gone at school ; she's my baby girl and only 4 years old but yet I have to make a choice I will have to live with -the choice to send her to a school two hours away so that she doesn't have to ride in a vehicle 4 hours a day plus school for 8 hours....Whewwwww that's a lot on a baby that's a lot on a parent. I get her back on the weekends and they fly by so fast , I'm so happy school is almost out and she will be home all summer long.

Just missing my baby girl, I still have my other girls at home but its no comparison to having all of my girls home with me at once. Kendall and Giuliana miss Noel when she is not home too, they ask when sissy is coming home our house is not a home when we are all not there to share it together.

Ive been asked about my Wish List ( Donate ) Button up to the right of my blog - this button was put here a while ago. If you have been with me since the start of this blog- It was my very intention to take Noel to China to get stem cells to help her eyes Ive since realized people that don't know or haven't experienced what life is like and the challenges we face day to day don't actually know or don't believe in the therapy or are hesitant to help. I've put this button there to help with any of the trips, therapies, special needs toys , equipment etc that Noel may need. This account is strictly for Noel and the things she may need- what makes a company charge outrageous amounts for a child that needs things different.

What to do ?

I'm so torn on what to do, not so much torn but I feel helpless in the situation that I'm in. Noel has her feeding clinic scheduled for May 30- June 22 she desperately needs this clinic, just the two things they told me to do at home with her on our initial visit she has been doing slowly and I know with more intensive treatment she will overcome this feeding issue. 


How do people make it with no savings, one income and no family support? I never expected the challenges I face but I always embrace them and do what I have to do and think that somehow God will see us through it and he has for sure. If it wasn't for donations when the girls were born, we would have never been able to go run back and forth the 2 hours away that they were to see them. We wouldn't of been able to pay for a place to stay and co-pays etc while I was out of work. I just don't understand how people do it, we have no family support, no savings and one income I'm praying that this situation will work out for us. I don't want to be a failure to my child. I feel so angry with the insurance company for not providing the things that we can use at home to help her we have great insurance through my job and she still gets nothing. Special needs toys - why are they so expensive life definitely  works against you but I try so hard to stay positive. Letting my daughter stay at the dorm at her school I know they love her to death but she is 4 years old, what do I do I can't provide everything she needs to blossom and grow into an independent young lady, makes me as a mom sometimes feel like a failure. Either way she is my daughter I love her and will do what I need to do for her and the rest of my family if we eat double cheeseburgers every day for a month. 

How do you do it ?

This is a question that bothers me. How do you do it? I have three children and I work full-time and I am the sole breakmaker in my home. I drive my daughter to school everyday, pick her up from a friend that helps me with her, home to fix dinner, baths, bed and do it all over again. How do I do it ? I just do it.

When given the opportunity you either excel or fail. I want my children to go after and do anything they want. Nothing should hold them back, not vision , not autism , not chronic lung disease NOTHING. You can succeed at anything you set your sights on or you can fail miserably. I choose to set an example for my children.

Don't let the opinions of the average man sway you. Dream, and he thinks you're crazy. Succeed, and he thinks you're lucky. Acquire wealth, and he thinks you're greedy. Pay no attention. He simply doesn't understand.

Author " Robert G Allen "

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

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.

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.”

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.

Where does time go

Wow, where does time go? Its already December, last time I posted it was October. I've been busy busy busy with the kids, Noel's therapists coming out to the house- she has started Speech and OT now and doing much better, we actually know she is in the house now. I took Noel for little trip to Morgantown,WV to see a feeding specialist and Im waiting on their report, but I thought it was successful, as she did what she always does for us, throw up when thick or textured foods are offered; one thing she does like is Hamburger Helper grinded up - yuck.

April is right around the corner and Noel will be starting preschool - Im so excited, I really think she will start to blossom then. She will have teachers and people that deal with blind and deaf children everyday and know what kind of things to do for them and how to teach them. Im not saying that I dont , but well I dont. I research as much as possibly can, and I do everything her therapists tell me to do with her as time will allow me , but I think with her going to school, things will start to change. The drive 2 hours one way isnt going to be nice, but its worth it so that my baby can get the best education possible.

Merry Christmas everyone. 

 I probably wont be back until after Christmas, Im working on my hairbow and tutu business and raising 3 kids and working, busy busy busy.

Its been a while

Its been a while, Im sorry that I haven't had the chance to log on and write. Life has been a little hectic with a newborn and Noel is now cruising around the house. She is walking along furniture, climbling all over the place, up on the couch, up the stairs, everywhere. Its great to see her come along the way she is, its such a huge difference from the way she was before when you would never even know she was there. Now when I get home from work and say hello to all the kids, Noel comes crawling up to me and stands up to hug my leg. 

The above is some more recent pics of Noel and her sisters. She is really growing up, im so excited to take her up to a seminar at the West Virginia School for the Deaf/Blind in two weeks, we will be staying there all weekend and learning different thinks about braille, working with the cane and touring the school she will be starting in April 2011.