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Who We Are

Hi! We're a group of Christian Moms and Caregivers whose kids need help from mechanical ventilation to breathe. Our kids range in age from infants to young adults, and are on ventilators for a variety of reasons. Some have autonomic disorders like CCHS and ROHHAD. Others have a brain tumor, a neuromuscular disease, a Chiari malformation, or a brain or spinal cord injury. Some kids have chronic lung or heart disease. But, no matter what their age, illness, or injury, all of our kids need help to breathe.

Most of our kids have tracheostomy tubes, but some are able to use Non-Invasive modes of ventilation like Bipap ST, Vpap, or curaiss ventilation, and a few have diaphragm pacers.

Many of our kids have multiple medical issues, and may have feeding tubes, braces, wheelchairs, assisted communication devices, or other equipment to help them eat, move, and talk.

Some of our teens and young adults are able to participate in the group themselves. Teens ages 13-17 may participate with a parent's consent. Young adults 18 and over may join as members.

The Kids with Vents Prayer Circle is a place to share your faith, request prayer support, post praise reports, listen to uplifting music, and find encouragement from fellow believers!

Everyone's background and experience is a little different, but we are joined in our belief that Jesus is the Son of God, that he died to save us, and that our strength comes from Him.

We welcome you to the
Kids with Vents Prayer Circle, and hope you will find many friends here!


Saturday, July 31, 2010

PRAISE REPORTS

Moriah:
  1. Moriah is fianally HOME!
Danette:
  1. Thanks that Danette's ear tubes were placed successfully even with her anesthesia difficulties, and that the anesthesiologists think an epidural should be possible when her hip replacements are done.
Tabitha:
  1. Thanks that Tabitha did well with her scheduled surgeries, was only in the hospital for three days, and is back home!
Hannah:
  1. Thanks to Marpac (100 pediatric trach ties), BryanMedical (four peds trach tubes), and Newport ( four reusable vent circuits and a year's supply of vent filters) for being God's hands with their generous corporate donations!
  2. Thanks to all our wonderful Kids with Vents members who are donating supplies and money to cover the overseas shipping to get everything to Hannah.
  3. Thanks to Lailani for organizing all the supplies and shipping.

PRAYER REQUESTS

Urgent Requests:
  1. Moriah got sick - right after her parents finally got her home from the hospital (after waiting over 2 1/2 years!)  Please pray for Moriah to get well, for her parents to have the energy to keep up her care, and for her to be stay home.
  2. Kaitlyn has been in the hospital for over a month battling a shut down of her GI tract and sepsis.  They just found out that she is septic again.  Please pray that she can clear this infection and that her gut starts working again (or that the doctors come up with another plan so she can go home.)
  3. Toby has a tethered cord that may or may not be causing a number of problems. The surgery carries certain risks, as does not doing it. Please pray for Carrie and Bruce as they make the difficult decision of whether or not to do the surgery, and where to have it done.  Also, please pray that the timing of the surgery works out just right. 
  4. Help and support through the grief of loosing Natalie for the Teegarden family.  If you know the family personally, or have ever read Natalie's Blog http://babygirltee-jennifer.blogspot.com/, please send a postcard with the words "I know Natalie!" to: Natalie Evelyn Teegarden, 120 Parkwood Rd, Rochester, NY 14615
  5. Deborah was just diagnosed with two infections (one very serious.) Please pray for her full recovery (including negative cultures), that her GI system tolerates the antibiotics, and that she is able to get the surgeries she needs soon to avoid another aspiration pneumonia.
  6. Eithene is in the hospital with an infection and a bunch of complications.  Please pray for a full recovery and that she is home soon.
  7. Braden is finally coming home.  Please pray that no complications come up and that he gets to go home on November 16th as planned. 
  8. Mandi has AML (leukemia) and has made it through the ablative therapy and the cord blood transplant has engrafted.  Please continue to pray that the transplant is 100% successful, as this is the last treatment available.  Mandi is a fellow Yalie, and an amazing hockey player. One of her nurses told her to "prepare herself mentally and to think of this as the toughest hockey game she has ever yet played.  She is focusing on never giving up during this game and on emerging the winner!!!
For all our Members:
  1. Healing
  2. Strength
  3. Courage
  4. Health
  5. Finances
  6. Grief
  7. Loneliness
  8. All the other unspoken needs that only our Father knows about.
Christamae:
  1. Needs nursing issues worked out quickly for both her and her sister, Danielle, so they can both get the care they need.
Michael:
  1. A safe trip to California to participate in a Joni & Friends training event.
    Jamie & Evan H: 
    1. Guidance and help from God in making the right choices for Evan. 
    2. The strength to care for Evan by herself.
    3. Nursing care for Evan.
    4. For Evan to get the right nutrition and continue to regain lost weight.
    5. For Evan to have a great school year.
    Erika & Evan W:
    1. Personal health issues for Erika.
    2. Evan's surgery to fix his foot drop has been postponed until next spring.  The doctor left the decision up to Erika, and she asks us to please pray that she would do the right thing for Evan and that God would give her peace.
      Allison & Brett:
      1. Continued healing from spinal surgery and complications for Brett.
      2. Success in finding a new nurse for two uncovered days.
      Carrie & Toby:
      1. Success in moving Toby forward in eating textures.
      2. Patience and endurance for Carrie in getting Toby to eat by mouth,
      3. Wisdom for the medical team working with Toby.
      4. Continued success in preschool for Toby.
      Danette:
      1. Relief from pain.
      2. Wisdom for her doctors to figure out a safe way to replace her hips.
      MJ:
      1. Recovery from all current complications/infections.
      Jena & Ryan H:
      1. Nursing care for Ryan.
      Dani & Ash:
      1. That their new nurses work out well.
      Vanessa & Josh:
      1. Success in RT school for Vanessa.
      2. Dependable, quality nursing care for Josh.
      3. A smooth and healthy start in Junior High for Josh.
      Lucy & Colton:
      1. Resolution of Lucy's serious shoulder problems so no further surgery is needed.
      2. A definitive diagnosis for Colton and wisdom for his doctors in how to treat him.
      3. All required special equipment and supplies approved and delivered quickly.
      Patricia & Deborah:
      1. A full recovery from the two infections with which Deborah was just diagnosed.
      2. That Deborah is able to get the surgeries she needs done at one time by the best surgeon possible.
      3. Treatment for past medical trauma and coordination of care for future procedures to avoid further trauma.
      4. That all Deborah's current nurses continue to work out well, and that we are able to get the two days that opened up filled with a great nurse.
      5. Deborah's continued progress in OT and PT.
      6. Successful graduate school admissions for Deborah & success in getting Vocational Rehab to pay the full cost of the program.
      7. Finding a job soon for Patricia (one with a good work environment and flexible hours) and Trusting God to provide for all our needs in the meantime.
        Braden:
        1. Getting all the supplies delivered and all nursing hours covered so Braden can finally come home on November 16th.
        Nick:
        1. Help in finding the right nurses/aides to provide the care he needs.
        2. Finding the perfect ENT doctor to treat him, healing of his trach stoma and relief from pain.
        3. Recovery from past medical trauma and better care for future procedures to avoid further trauma.
          Sydney:
          1. The perfect equipment for her to be able to get around independently, play, and interact with others while on the vent.
          Kira:
          1. That Kira and Christian continue to love their new school.
          2. Continued success in 1st grade.
          Moriah:
          1. Success in remaining stable while sprinting off the vent.  Moriah has had some set backs in sprinting off the vent, and has had to go back on the vent 24/7 several times.
          2. Getting to finally come home!
          Joseph:
          1. Continued success with his new kidney.
          Additional Kids:
          1. Shea - Remission from JRA (she's started a new med that should help her.)

          Thursday, July 29, 2010

          KIDS, TEENS, & YOUNG ADULTS



          All our Kids with Vents Kids, Teens, and Young Adults need to be lifted up in Prayer:

          CHILDREN
          Aaron
          Amanda
          Ash
          Braden
          Brett
          Carmen
          Colt
          Colton
          Danielle
          Eithene
          Evan W.
          Hannah
          Hunter
          Jaron
          Joseph
          Kaitlyn
          Kamilah
          Katrina
          Kira
          Kira Fae
          Lauren
          Lucas
          Megan
          Moriah
          Mya
          Noah
          Nicholas
          Sophie (OH)
          Sophie (UK)
          Sydney
          Tabitha
          Toby
          Zoe

          TEENS
          Dani
          Evan H.
          Josh
          Ryan S.
          Sarah

          YOUNG ADULTS
          Andrew
          Becky
          Catherine
          Christamae
          Danette
          Deborah
          Joe
          Kimi
          Mark
          Michael
          Mike
          MJ
          Nick

          ANGELS
          Kyle
          Natalie
          Ryan
          Taleah

          MOMS, DADS, & CAREGIVERS


          All our Kids with Vents Moms, Dads, and Caregivers need to be covered in Prayer:

          Alex
          Allison
          Amanda
          Ami
          Annette
          Anthony
          Brenda
          Burke
          Carrie
          Cherylynn
          Cindy
          Corey
          Crystal
          Erika
          Frederick
          Jackie
          Jamie
          Jena
          Jennifer P.
          Jennifer T.
          Jerilynn
          Jessica
          Joan
          Joseph
          Kara
          Kimberley
          Krista
          Linda
          Lisa
          Liz
          Lucy
          Lynn
          Martha
          Mary
          Megan
          Melinda
          Michelle
          Monica
          Patricia
          Penny
          Rosa
          Sarah
          Sharon
          Sheila
          Stephanie
          Sue
          Tabbie
          Teresa
          Vanessa
          Victoria

          Standing in the Gap



          Standing In The Gap


          We'll stand in the gap for our special kids
          We'll stand till the victory's won
          This one thing we know, that You love them so
          And your work with our children is not done
          We'll stand in the gap every day
          And there we will fervently pray
          And Lord, just one favor, don't let us waver
          If things get quite rough, which they may 
          We'll never give up on these kids
          Nor will You for You promised them joy
          For we know it was true, when they said "Yes" to You
          Though the enemy seeks to destroy 
          We'll not quit as we intercede
          For You are their Savior indeed
          Though it may take years, We give you our fears
          As we trust every moment we plead 
          And so in the gap we will stand
          Heeding your every command
          With help from above, We unconditionally love
          And soon they will reach for your hand.

          Welcome to the Kids with Vents Prayer Circle Blog!


          Welcome fellow prayer warriors!  We have a number of prayer requests already.  A Blog was the easiest way to let all our members and their families, church prayer groups, and friends, etc. see the group's prayer needs.  We won't be posting pictures, locations, or last names, however, for privacy reasons.  


          I will edit and add posts as needed to include changes, additions, and praise reports.  Just email me at Kids_with_Vents@yahoo.com with anything you want revised.  There is a music player filled with a variety of Christian music at the bottom of the page. Let me know if there are any other songs that you would like added (and also if there are any you really want removed!)

          We are also going to be starting a great program called Blogging through the Bible in 90 days!  Did you know that you can actually read the entire Bible in just 90 days by reading about 12 pages a day?  We will be starting a bit later than most of the other groups to allow time for everyone to get ready, but I will post the daily reading assignment and message as we go along.  We will start on August 15, 2010, and should finish on October 13th!

          Have a Blessed Day!