Christmas Day Has Passed

Christmas Day is over, but our Lord is here to stay; reason enough to celebrate every day! We had a good Christmas. Opened up our gifts in the morning. Spent time with family and friends. Mom and brother went to church on Christmas Day. I wish I could have gone, but was not able to. Looking forward to the days ahead and celebrate the New Year! I'm really hoping that the New Year brings the possibility of accomplishing everything on my bucketlist,  but my family can't do it alone. Please help me accomplish whatever's within  your possibilities Hope all of you had a wonderful Christmas! Blessings to all of you.

Christmas is Here!

In my home you can already sense Christmas in the air! The tree was decorated last week. I was helped to place Christmas decorations on the tree through others' helping my hands. Santa Claus came over to visit me! This is a busy month for me with so many doctor appointments. What if Christmas doesn't come with gifts? This year seems to lack the possibility of gifts. I don't perceive the enthusiasm and movement of gifts. Even without gifts, at least we have each other as a family and will be celebrating together this beautiful tradition that is Christmas (Birth of Jesus)

Monserrat Hernandez My two day hospital stay

Two days ago I had to go the hospital. There was a bit of blood residue coming out of my gastric tube. I want to talk a little about my condition and how I live with it. My mom and I want to create awareness about this condition which has no cure. There are 4 known types of Spinal Muscular Atrophy, I will concentrate on type 1,which is the one I have, also known as Hoffman's Syndrome.It is the most severe and generally affects the baby during the first months of life. When born, babies appear flacid and they don't acquire motor  skills the way other babies do. For example, they cannon lift their head, sit,, or crawl. It also affects the muscles of the respiratory system and digestive system. A mechanical respirator (like the one I have) is needed so that the child can bread the easily. Also a feeding tube that goes into my digestive system is needed so that I can  eat and live. In general, someone with  this condition has a life expectancy of 2 to 4 years, and the main cause of death is complications to the respiratory system.Cases exist where some have lived longer with the help of respirator.

Monserrat Hernandez: Why a Bigger House?

Hi ! My parents suggested to make a blog where they could document some of  my history. I don't understand much of this . My mom suggested a wish list and I have high hopes of having them come true.
Spinal muscular atrophy has robbed me of my mobility. It's sad to not be able to be like any other normal

normal little girl.I want to grow, there are so many things I want to do (dance, play, jump), and get to know places. My mom tells me to imagine that I'm doing all of those things that I want to do, because in my mind I can think, in my mind, I am free.

I live in a small apartment I have a bedroom,but it's so small, that only half of my medical equipment fits in it. The other half I have in the living room, next to my wheelchair. I don't have a bathroom of my own, and I need it. My pediatrician and rehabilitation specialist have constantly recommended that I be bathed in the bathroom, because I've always been bathed in bed.In the bathroom my wheelchair doesn't fit, and we cannot rebuild the bathroom because this apartment is not ours. That's why I need a bigger place. Even though my parents don't understand much about blogging, we'll continue to post updates. Does anyone have any suggestions for the blog or the pursuit of a new home?