About Me

Palmyra, VA, United States
Jasmine is our special miracle baby. She was born 17 weeks early and stayed in the neonatal intensive care unit for three and half months. She came home with oxygen for a short time and was free and clear for a while. She started out with the usual babbling a couple of months behind the learning curve due to her developmental delay. At 16 months, we were told she needed hearing aides for her mild to moderate hearing loss. It was then we stopped hearing anything from her. At age 2, we found out she was diagnosed with Autism Spectrum Disorder (ASD). Jasmine is non verbal autistic. In the beginning of 2010, she had been hospitalized and diagnosed with viral pneumonia. One week later, she was admitted again for bacterial pneumonia. We spent nearly a month in the hospital overall. We found out she had cysts in her left lung. In September after much debate and continuous problems, the mass and all of her lower left lung lobe had been removed surgically. It was just not any mass but a cancerous one. Jasmine has Pleuropulmonary Blastoma (PPB) -Type II.

Sunday, November 28, 2010

Week 8: Sunday

This weekend has been pretty boring.  The most recent treatment went good for the most part but I can tell something is going on.  Jasmine is fighting something we can't see. I think its just side effects we can't see and she can't verbalize to us.  It might even be a combination of this and some the over the top tantrums she's been having.  Her hands and feet have been peeling so badly.  I've been trying to keep at it with lotion but notice the redness to some of the more raw areas.  She might even be having some post nasal drip effecting her throat.  I've been wiping her mouth out and giving her thrush meds all weekend to finish out the course we started.  Her breath is telling me her sinus is draining. I"m just waiting for Tuesday to come to check on her counts and see what is going on with her skin.  I kind of sat out most of the weekend to keep her out of the holiday shopping madness.  With more people come more germs,  with more shopping comes more handling, with more handling comes less thought about who handled what and if they washed their hands. We don't need any of it.  I hope our quick run into Walmart today was quick enough. Yes, I'm keeping her in a mini bubble until things have improved. As the days are getting colder, I find that we can't let her stay outdoors and play for too long.  Those days of flying the kite out in front of the house or blowing bubbles are over.  Now we have to reinvent fun time.  We can't go out everyday and do something with her.  She is much like me though.  We don't like to be stuck indoors for too long.  This two day stretch was too long.  She loves just being out even if its a trip to the store down the road.  I have thought of doing some craft projects with supplies have collected over the year.  They may be a little out of her league but I'm willing to try. I've even asked David to participate in this. 
After a blow up this afternoon, about the usual, I told him it would have been nice to take her to some place like Chuckie Cheese when they opened.  Unfortunately, it just wasn't feasible to take her there all the time.  Who could afford it?   Maybe once a month or something, but not all the time.  We could still manage to do things with her a home but it was just going to require more thought.  
Today my sister came over and we made pizzas.  We talked about how I needed to make changes to Jasmine's diet to help her health.  She needed more veggies in her diet.  So, I took the opportunity to make a spinach, onion and garlic pizza.  Jasmine loved it. She was hesitant but finally got in to it.  I think this change might go over well if I hide it with cheese.  Jasmine was thrilled today to have company.  She didn't want my sister to leave yet again.  This time my sister worked her way to the door and as soon as her hand was on the door knob, Jasmine started crying.  She was about to drop to the floor and knock her head on the tv console to go into a tantrum, when I caught her. She went limp so it made it so hard for me to pick her up.  After I had her picked up, she reach let out a good screaming cry and grabbed my sister's fingers to pull her away from the door.  When that didn't work, she threw her weight towards my sister and out of my arms.  I grabbed my sisters soda and plate of leftovers, so they didn't drop to the floor. She managed to get a better hold of Jasmine then. Jasmine lied on her like she was going to nap on her shoulder and hugged her. She stopped crying.  My sister was touched by it but felt bad.  I told her not to feel bad because she knew what she was doing.  When we did the switch, we did it quick because we knew what was coming.  She screamed and cried as I told Jasmine to wave goodbye.  I told her we would see her next weekend.  I tried to draw faces on the fogged up glass of the storm door to distract her.  It didn't work.  I took her to her pizza and grabbed the drink I mixed her miralax in.  She hadn't drank much today but I got her to drink this.  I told her to drink because it would make her feel better.  It might have been luck but it worked. She drank most of it and we finished up her pizza with a few more outbursts.  I was running out of distractions so I sang a song that Jasmine loves.  I have no idea why it came to my head but it did.  The ice cream and cake song.  I started it and didn't even know if it sounded right or if I was off. I did it again!  She smiled big and I kept on going for a while.  
We finished the night off with a bath and now she's sound a sleep.  Now that this laundry has finished spinning, I can throw it in the dryer and go to bed.  
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