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.

Friday, November 12, 2010

Week 5: Thursday and Friday

Today did not start out very good.  Jasmine was crying again and I had so little time to get out the door.  She just wanted me to hold her and sit with her.  She would occassionally walk over to the kitchen counter and look for something, food.  Once again part of the problem with her mouth at this point was the texture of the foods she wanted to eat.  I couldn't give her the usual stuff because it would feel like her mouth was being cut open.  I resorted to the Go gurt.  She was more accepting of it when I sat with her on my lap in the recliner.  We watched Sesame street and she slowly ate her yogurt.  By the time we were done with that, I got up and she fussed. She wanted me to sit with her and pick her up.  She would drag me by my figure to the recliner again with a book this time.  I had to go and get going.  I was going to be late for work if I didn't leave.  I had to wake David up and make sure he knew what she wanted.  I ran off trying to get my lunch together and shoes on.  I got my jacket on and she started crying again.  She wanted me to stay but I couldn't.  I gave her a hug and ran off.  Ahh, I forgot to fill up the car.  I was going to be late.
It bothered me to have to leave her like that but it had to be done. The whole way to work I had to talk myself out of crying.  I couldn't provide the one thing she wanted this morning, Me. I hate this.  I know hate is such a strong word but that's how I feel about this cancer. 
By the time I got home, her condition hadn't changed.  She was still feeling the same. I bought her some baby food and a smoothie during my lunch.  I had hoped the smoothie would be a winner but it wasn't.  Out of desperation I tried the baby food.  I knew it would upset her.  Yet another no go. This time I offered her some milk.  She hadn't drank anything all day.  David said he changed a couple of wet diapers but the last ones weren't much.  She's not drinking enough and I can see it by looking at her skin.  She sucked down 2 individual milks.  By this time I had to go out and grab some more milk for one and some other small items.  The dogs were out of food too.  
Throughout all this these dogs have been outstanding.  They have managed to keep it together throughtout the shift change of people coming to take care of them.  Their love for Jasmine is undying. The oldest one misses her the most. When we come home she wants to be around her up close and too personal.  I tell her to stop but its no use. I think its sweet and never push the subject any further.
Off I went to get her some milk and came back only to see the time. It was was a quarter to 9. I was officially exhausted.  On the way back, I could feel myself swirving on the road.  No more trips after work and at night.  I need to be in one piece if I want to help anyone. 


Friday
Okay, so I got up this morning and I checked out Amanda's fundraising page.  I'm thankful for people's kindness and thoughtfulness.  Amanda, whom I have never met (but know through a friend) , is running a Marathon and made Jasmine her cause.  When she asked me, if she could make Jasmine her cause, I didn't know what to say.  I have participated in fundraising events myself.  Never in a million years did I ever imagine we would be on the other end of the event.  I thanked her for making Jasmine her cause and for wanting to make her run more personal.   I honestly cried when I read what she wanted to do for Jasmine.  Here was someone who I had not met and people I have not seen in so long helping Jasmine.  It warms my heart.  
I wish I could say Jasmine was feeling better but I can't.  She is still the same. It's definitely thrush and maybe some mouth sores I can't see.  I'm sure she will get over this soon but its a blow every time something like this happens.  It makes me worry so much.  
Thankfully, my cold is letting up a bit and Jasmine still has some energy.  She didn't want to do what I set out for her to play but after she saw it, it was all good.  I threw out a big pad on the floor and broke out some finger paints.  I need to clean the house and she needed a bath. I call that perfect timing. I squirted out all 4 colors and let her do her thing.  Of course, I never did take into account the possibility of her socks soaking in paint.  When she was done, we wiped her hands and off she went.  It wasn't until she got to the recliner did I realize she had it on her socks.  Thank goodness for washable paint. 
Well, I guess that does it for her.  She's napping now and David has gone to work.  I think I will take this opportunity for some much needed sleep.  



1 comment:

  1. Hang in there Rachel. I wish I lived closer to you so I could help you out. Maybe run those errands for you. Amanda is an amazing person for doing what she's doing. I've sent the link to everyone I know. I just wish there was more I could do.

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