Sunday, January 29, 2012

Rick Santorum's Daughter, Bella

Kayli and Bella share the same syndrome, along with many other survivors!  There is a wide spectrum of children surviving with Trisomy 13 and Trisomy 18!  Unfortunately, about 90% do not get a chance to thrive because the Moms are not given complete information during pregnancy and are pressured into TERMINATING their pregnancy or the babies are DISCRIMINATED against and DENIED life saving surgeries simply because the spectrum of the diagnosis is not recognized world wide!  There is a community of Surviving children (some in their 30's!) with Trisomy!  The oldest living Woman with Trisomy 18 was 47 years old, and had 2 college degrees!!! You are helping our children, simply by being aware of this Syndrome!  YOU can make a difference!  If you hear of anybody who has a pregnancy or loved one affected with Trisomy, please have them contact myself @,, or Kayli's blog (here) at  To see videos of children surviving with a Trisomy Diagnosis throughout the USA and Internationally, please visit the advocacy site at !  Thank YOU for making the difference in the LIFE of a child! <3

Monday, January 23, 2012

I. am. exhausted.... I had people (dr's therapists, nurses, aids, etc) lining up outside Kayli's room at the hospital to speak with me (I'd rather this, than nobody helping Kayli!), got in a brief visit from one of Kayli's home care nurses, went home to be with my boys, went to do an errand with the family, got caught up in a call from MAW while in a store, and now am trying to find the energy to feed the boys, shower, and get back to be with Kayli.  There is so much to do, and my days are flying by too quickly! Before I can go back, I have to put together a letter to move forward on the installation of the lift.  And, I have to order Kayli's supplies... Days like this, I wish I could "work" in my sleep! lol The surgeon consulted on Kayli twice today (I guess the first time, I fell asleep and was out cold and he couldn't even wake me up! The hospitalist said the same thing!).  It sounds like all involved agree there is something going on in Kayli's abdomen.  The surgeon is going over her past abdominal xrays to look for a pattern, then is entertaining the idea of an enima with dye to see where the system is going awry.  His first concern is a tear or blockage in her small intestine, then blockage in her large intestine, and also a concern that her bowels (colon?) is/are not working...which could mean a surgery to remove that portion of bowel?  The urologist suggested that if the colon is not working anymore and is built up with fecal matter or swollen with infection, it could be pushing up against the bladder and compromising the function of the bladder (releasing urine). I can't Thank you enough for all the prayers and well wishes!!! God Bless you! I hope to hear good news when I get back to the hospital!

Back in the Hospital

Kayli was admitted back into the hospital on Jan. 12th for Bladder Retention (she isn't voiding).  She is having further issues now, including abdominal pain, fevers, ear infections, and poor stool output.  She has been up all night with pain, and is challenging all the doctors to find the source of the issues while patiently waiting for us to figure it all out.  Please keep her in your prayers.  She needs comfort, peace, and the medical staff needs guidance.  Thank you!  God Bless!

Saturday, January 7, 2012

Kayli is home!

Kayli's hospital stay was because she had an ear infection that wasn't treated properly by her ENT.  The bacteria grew to be a sinus infection and ear infection that needed IV antibiotics.  The same bacteria is known to cause Bronchitis and Pneumonia, but Kayli was fortunate to not get those! :D I believe she also had a tummy infection (she had blood clots in her stomach, and was flinching when her tummy was touched.  She also refused to lay down the first 3 days of her hospital stay).  She is doing VERY well now, and is smiling at her Daddy, Brothers, Nurses, and Therapists!  She is truly a happy kiddo!  We are happy to have her home with us!

I hope she stays well enough to travel to a FUNraiser held for Noah's Never Ending Rainbow this month! It is a worthy non-profit organization, please let me know if you would like to join us for the FUN!

Kayli was accepted in the Make a Wish program, and we are planning a trip to Disney where she will get together with many of her Trisomy Families, and some Friends of our Family!

You can learn more about Noah's Never Ending Rainbow on fb, or on the web @