It became obvious very quickly around here that getting a pass was a big deal! You wear a special mask and you get to leave the confines of 5200 without being hooked up to any machines, no pole....FREEDOM! When Olivia started getting her passes last week she started at just an hour. We would wait until the early evening when things around the hospital slowed down and then we'd go walk around. I thought it would be good for Olivia to get some exercise and practice wearing the big green mask. Olivia does enjoy our little exploration sessions. I feel like she gets good exercise and she's slowly able to build up her strength. Her lungs get a good workout too since it is a little harder to breathe with the big green mask on. The doctors were all thrilled with our little excursions, they agreed that it's great exercise. Then I learned that most kids on pass go to their apartments near by. They are able to take their masks off when they are in the car and back at their apartments. We won't have an apartment until closer to discharge so we have to improvise. During our exploration sessions last week we discovered a "secret playground". Olivia saw the playground and got very upset that we couldn't go but I wanted to clear it with her doctor first and you needed a code to get through the gate and into the playground area. I asked her doctors and they said it would be fine as long as it wasn't too crowded. So our nurse gave us the code and we got ready to go on our pass. Olivia was excited to see the playground and happily went down the slide a couple of times. I was glad she was having fun but I was a little sad too, it's always a little sad to see just one child at a playground. I couldn't help but think of how different things were just a couple of months ago. She would happily run all over a playground and I'd have to beg her to go. The playground was a bargaining tool that I used throughout the day....."finish your breakfast if you want to go to the park", "if you want to go to the park you have to help pick up your toys", "we will not go to the park today because you just threw your book at Peter's head", etc. Yesterday I caught myself saying, "go down the slide one more time then I'll carry you back inside." Olivia and I do our laps around 5200 diligently but she is not nearly as strong as she was just a few weeks ago. She can barely walk up stairs! By the time we finished playing yesterday her little legs were trembling. To finish up our pass we stopped by the hospital gift shop. I let Olivia pick out a helium balloon and she had a blast choosing one. I decided that I would let her choose all on her own and I watched as she slowly narrowed it down to two, a colorful butterfly and a giant pink foot proclaiming "its a girl". Thankfully she chose the butterfly after I pointed out all the pretty colors. She proudly carried the balloon back up to 5200 all by herself.
In October, 2008 Olivia was disgnosed with MPS III or Sanfilippo Syndrome, type B. MPS stands for: Mucopolysaccharidoses. It is a genetic lysosomal storage disease (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.
Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.
2 comments:
I think it may have been funnier is she picked out the "it's a girl balloon" you would have gotten even more strange looks.
I wish I was special enough to have my own secret playground AND get to pick out my own balloon!
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