Day 3

Even Betsy is getting love from Matthew. Her tummy has been upset, very loud. but once Matt got here she perked up.

At the Benson House, we build cars, choppers, buggy's and anything else with wheels...but we just added jewelry. Aaron helped me with the metal parts and what not. 1 only have 1 done so far. here's some pictures

Angel wings cause the Tammy Cochran Song "angels in waiting" That's always been such an amazing song. It moves everyone to tears every time.

Also Stellan needs your prayers, The ablation surgery is tonight. It's a dangerous surgery for an infant. I'm not a religious person but please pray for Stellan he needs every ones prayers. Also tomorrow I'm going to wear orange for Stellan I think it will bring him good luck so please join me. 

Day 1

I drink alone (not) that's a mojito my friend.

with my good friend cookie. you can always count on cookie. 

Well parents are officially on vacation. So needless to say I'm drinking and I'm hungry. It's going to be a loooonnng week.

Today I spent most the day sleeping, but that's not unusual. I feel like I'm on that bridge of being sick. but don't worry I'm fighting it off, with cookie and Mojito's hahaha

well its time to go in the spa. 

life isnt to bad with out parents...... so far.

i hate

I don't know how to write what I feel, I have no clue how to make you understand the thoughts that are going through my head. I hate that feeling. 

I hate feeling like I'm the only one.

I hate feeling like I'm such a drag.

I hate feeling like I'm the oldest 22 year old i know

I hate feeling like I'm fighting a loosing battle.

I hate the smell of vanilla

 

I hate the feeling like all I do is complain.

my day's are fun

tomorrow i wake up early and go to pulmonary rehab. I enjoy going and making progress in my health the new beginning to a healthy me. Sometimes it feels like my life is consumed by my disease. Appointments blood work xray's rounds of IV's. My life is taking care of myself. 

Some people don't understand. Maybe they choose not to understand. I'm not your typical 22yr old. I can be if you give me the chance, i might walk a little slower and people might stare when i cough. But i cant control those things so why should you fault me for it? its hard enough emotionally knowing the statics's of my life. I have never been one of those people who are poor me, it's so awful being me blah blah blah. I think if you did know me you would see i'am the complete opposite. It hurts when people dont see me as Jessica, They see me as the girl with CF.

meet joey

 Joey meet my blogger friends

well what is sad is when your excited about a new feeding pump.

Go figure!

Its small and blue and pretty. all good in my book

ill try and post later tonight

i have nothing to write

i have nothing to write. Nothing that is important anyway.

 so ill just show you some pictures

Remember when my mom hacked into my blog? 

Here are some pictures from the day.

I was tired by the end, can you tell?

 

Night all 

 x0x0x0

 

Here is my Great Strides Page. Please take a min and read what i wrote i think it turned out great this year. This is such an awful disease and living it every day makes me realize how special every day is. 65 roses is such a beautiful name for something that is so ugly.

 with love Jess

All is well

All is well with me, just another day doing what i do. Had a doctor appointment in Santa Clarita and it went very well. No changes in medication and the doctor was pleased to see i have maintained my weight. The plans are to continue taking excellent care of myself and hopefully make 6 months without another round of IV's. I'm having fun, being on no schedule and spending Monday Wednesday and Friday at pulmonary rehab with my new work out buddies. Please keep Stellan in your prayers, he is such a beautiful baby with such a true fighting spirit. He needs all the good thought he can get, I love reading MckMama, she is such an inspiration in every way. I hope someday I will have the wisdom she possess.

He who has hope has everything-Arabian Proverb

Tell me isn't the sweetest thing you have ever seen.

Here's a wonderful Picture of our day at Universal Studios. I spent the day with my family and it was a great day the weather was perfect! I enjoyed carrying Angel around even if it was only for 15 min. haha The rides were fun and it was a great time.