Thursday, September 30, 2010

God Chooses Mom for Disabled Child

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments forpropagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.
" Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."

Thursday, September 23, 2010

Good Day!

Wahoo, we are up to 13.7lbs! Awesome... The doctors said to keep doing exactly what I am doing. But the truth is, at times I don't even know what I am doing. I will give you a glimpse into my night schedule.... All this starts at 8pm when I start his continuous feed and give him his enzymes, then at 10 I give his antibiotic, then at 12 I have to change the formula and give night meds, then at 1 am I give the last med for the night, then at 4am I undo the continuous feed and give more meds then start my day. This does not include the 2 sessions of breathing treatments, or CPTs we do for him every morning and night. So you may be asking when do I sleep? I don't! I don't mind because I love how healthy and happy Bryce. I just have to remember that one day we will find the CURE!!!

This was just published on the CF foundation website. We are getting one step closer to finding a cure.

“Improving Access to Clinical Trials Act” Passes U.S. House, Heads to President for Signature

September 23, 2010 Today the U.S. House of Representatives passed the “Improving Access to Clinical Trials Act” (I-ACT), in a victory for the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations.
The bill, which passed the Senate Aug. 5, now goes to President Obama’s desk for his signature. He is expected to sign it. This legislation enables patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits. Passage of this legislation is particularly important for people with CF, a rare genetic disease.
A limited patient population makes it challenging to find enough people to participate in research studies evaluating the effectiveness of promising new drugs.
“Because of this groundbreaking legislation, people with CF and other rare diseases will no longer be forced to choose between critical health care coverage and participation in research that could lead to the development of a cure for our most serious illnesses,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.
“We are grateful to our champions in Congress for approving this bill, which will help move new treatments more swiftly from the lab to the patients who need them most.”
Cystic Fibrosis Caucus Co-Chairs, Reps. Edward Markey, D-Mass., and Cliff Stearns, R-Fla., led the effort to pass the bill in the House. The House version of this legislation, HR 2866, has 141 co-sponsors.
The Senate version of the legislation, S. 1674, was introduced by Sen. Ron Wyden, D-Ore., with Sens. Chris Dodd, D-Conn., James Inhofe, R-Okla., Richard Shelby, R-Ala., and Dick Durbin, D-Ill., as original co-sponsors. An additional 17 co-sponsors signed on.
Current law prevents many people who receive Supplemental Security Income (SSI) from accepting research compensation because it makes them ineligible to receive government medical benefits. This penalty has stopped significant numbers of people with rare diseases from participating in clinical studies.

Monday, September 20, 2010

Bryce aka Happiest Baby Alive!

I have expressed before how I was not excited about this g-tube. Oh man, let me tell you that I totally have a different opinion now. This baby is growing like a monster and is the happiest thing ever! Well he has always been happy but his smile has grown to the size of Texas!!! I love it! All I have to say now is CF has no chance with us!

Wednesday, September 8, 2010

Please Vote for CF Grant!

Help the Cystic Fibrosis Foundation win $250,000 from the PepsiRefresh Project to help babies with CF breathe easier! All you have todo to help is log on to the Pepsi Refresh site and vote for ourproject. You can vote once a day every day this month!

We are currently in #3 but we need to be in the #1 or 2 spot to win the grant.

Friday, September 3, 2010

Come and Be Part of Bryce's Brigade...

The Great Strides 5K walk is one month away. There are 2 different ways that you can be on Bryce's team. You may participate in the walk or donate under his team name. If you have not signed up to walk or donated, here is the site that you may do so....

If you have any questions, you may contact me at jtomerlin12@gmail.


His bandages are adorable... His tummy looks a little bloated but it's the way he is laying. ( I called the Dr. and that is what he told me)

Thursday, September 2, 2010

Surgery is a sucess!

Bryce had his surgery yesterday. Everything went GREAT! His surgeon made his bandages into hearts. His g-tube looks good. I am nervous but I am feeling more comfortable about it.
When he wakes up again, I will take a picture of his belly. I didn't want to wake him up because he is sleeping so good.
Sorry I have been so bad at keeping everyone updated but I am everywhere. I am basically living out of my car. I stay at the hospital most nights, even though Nathan always volunteers to stay. So my day consist of hospital, work, hospital, and then every 3 or 4 days I at least try to stay the night with Bri or at least have dinner with her. I have slept at my house 4 times in the past 15 days. EXHAUSTED!!!!