My nephew and niece need your help!

I am asking you to help... I understand if you can't...

My nephew Isis and my new niece Phoenix have finally been diagnosed with Rigid Spine Muscular Dystrophy. It has taken over FIVE years to get this diagnosis. That is five years of my brother-in-law and sister-in-law worrying all the time. Having test after test done on Isis, and still not knowing what is wrong. It hasn't been easy for their family. It hasn't been easy for my family either. In many ways we are thankful that we know what they have. We are all finally done wondering. Now that we know though... we are all sad. Rigid Spine Muscular Dystrophy is not any easy disease to have.

Since Isis was 6 months old he has been fed by a feeding tube. Originally it was through his nose down to his stomach, but now he has a plug which is actually connected through his belly to his stomach. Everyday Isis sits for hours when a machine pumps food into his stomach. Tell me this... when was the last time you saw a 6 year old sit for hours to eat? How about a 1, 2, 3, 4, or 5 year old? Isis has done this his whole life. His parents taught him to read at a very early age, and so he either reads or draws to pass the time. I am attaching some drawings that Isis did, and that his mother colored for him.

Although there is no cure, there are ways to prolong life and help these children that have this disease. One is a cough assist machine that helps them cough. With Rigid Spine both my niece and nephew have very weak muscles. So weak in fact that Isis still cannot stand up by himself without having help or using furniture. He is six years old now. Phoenix cannot even sit, or does she even try to sit/crawl/scoot. We think she may be worse than her brother. The cough assist machine will will be used for both kids, and they will be hooked up in the morning to strengthen their lungs. Hopefully with this they can better fight off illness, and we can have them with us as long as possible.

My brother-in-law Nick is asking for donations for the cough assist machine. Even small donations will add up. It is not covered at all by insurance nor will he get one from the Australian government. Socialized medicine apparently doesn't think it is necessary. I guess it isn't, but will it ever help them. /sigh I am asking my friends and family to help me help them get this machine. I realize not everyone can donate, and I do not expect anyone to. I just want to give you the opportunity. Thank you friends!

Read below to find out how to donate, and to read up more about Rigid Spine. Nick has a blog and a website. The links are below. Thank you again!

From Nick... "Isis and Phoenix have a very rare disease called Rigid Spine Muscular Dystrophy. After attending a really great Muscular Dystrophy conference we discovered a machine that will help Isis and Phoenix to fight of Chest infections in the years to come. It is called the Cough Assist...

Attached is a flyer we are spreading around, because we are trying to get enough money for the machine which is $10,000 US.

If you can help us in any way please read the flyer, or visit the HERO: The Isis Barfuss Cough Assist Campaign website Nick built to find out how you can help. http://www.nickbarfuss.com/hero

Even if you can't (which is totally fine, please don't feel like you have to!) check out the following websites to find out more about Isis and Phoenix and their condition!

http://www.nickbarfuss.com/hero

A site created by Nick to help raise awareness about the importance the Cough Assist Machine for Isis and Phoenix.

http://rigidspine.blogspot.com/

**edit by jess**
dear friends and readers in the blogosphere...please help us by linking to either this page or directly to the websites nick has created (links above). we really want to get the word out here and raise awareness as much as we can... got any ideas? send them to us by email (bestmonkeyfriends AT yahoo DOT com) or leave a comment on this post. xoxo

Kids grow up...

My son is suddenly growing up fast. He is 7, and really starting to understand how the world works. Today I got all sad when I realized that at the end of this month he was conceived 8 years ago. An accident... yes. A ONE TIME accident I should specify. He can be a handful sometimes, but man do I love him.

I really should tell you why my son is growing up. I had two funny stories about him just today.

FUNNY STORY 1: This afternoon when I went to the doctor.

I have been sick for quite some time. Cold... Flu... Pneumonia... Bronchitis... I really had no clue. I just haven't got better. We are going on three weeks here dammit! So I woke up today feeling really crappy. /cough /cough. I walked up a flight of steps and I could not breath. I decide to go to the doctor.

My kids haven't even realized I have been sick for three weeks. One of the reasons I am not better yet I was told by the doctor. Figures.

In the waiting room the receptionist gives me a mask. My kids look worried.

We go into the exam room. While waiting my son starts asking me if I am going to be okay. I assured him I would be fine. /cough /cough. Then he is quiet for a few minutes. Next thing I know he states, "We will eat cereal, Eggo waffles, and popcorn mom. I'll cook it for us."

See these are all things I let him cook. He honestly was worried about this. His mom was sooooo sick she actually went to the doctor. W who was going to feed him? He obviously forgot about his father whom was coming home in a few hours.

I almost laughed, and then I almost cried. How sweet was that? My son taking care of me. Made me love him all the more.

FUNNY STORY 2: I get out of a bath.

So now my husband is home from snowboarding. He takes a hot bath and I feel like joining him. Being all sick a nice HOT bath sounds great. I should mention that my bathtub is really big.

Anyways, we sit and chat for awhile and then he gets out to go make dinner. After a bit I get out too. I put a towel around me when my husband yells something to me so I go to ask him what he said.

My son sees me in a towel.

He looks straight at my husband and starts laughing and says, "You guys were having sex." You know... in that sing song way kids make fun of other kids? I honestly almost lost it. My son still thinks that sex is laying in bed next to each other and then kissing. Close... but he really isn't the age to actually tell him what it REALLY is. /whew

Now it doesn't help that my husband starts laughing and says, "Um, no were were not." It then took a minute to convince my son that NO we were not having sex. For two seconds I felt like a teenager that was caught by my parents. It was my son... and I was innocent dang it!

So there you go. I am starting to feel old. Then the fact that my bday is coming up. I am still sick and am supposed to really rest. Doctors orders. No running and passing out. Rest. At least he gave me some really good cough syrup that puts you to sleep. /smile

I am soooo not a winner this month.