12/14/13

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

10/30/13

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. 

5/2/12

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