Parenting the special needs...

At A Glance...

This is a blog dedicated to my kiddos, Isabell and William. These amazing kids were born extra unique and one of a kind. It's currently unclear what Isabell and William's genetic disposition is- but they have faced many developmental and medical challenges. They each face their different challenges, but they are so much alike. We really think Isabell and William have the same un
diagnosed genetic syndrome. With a combined 24 hospitalizations, and 20 surgical procedures between these Warrior Kiddos, their needs are extra ordinary, and they are spectacular little children. I am the luckiest mom alive, and we are #leonfamilyaz

As I have time, I like to escape to this blog and give my readers a sneak peek into the window of our lives. Happy Reading!

Monday, February 3, 2014


Run for Ryan House 2014!

What is Ryan House?

To us, Ryan House is a home away from home for our WildManWillie. 

Williams entire life has revolved around a qualified care taker caring for him. Richard Leon and I have evolved into quite the professional care takers and everything we do is to perfectly meet Williams medical needs. To manage Williams life threatening conditions, it takes 24 hour care. 

Managing the health care needs of a non ambulatory 4 year old with a Trach, Oxygen, and G-Tube with special diet is very important and not just anyone can manage these medical complexities- among other complex needs of profoundly disabled children.

To manage Williams health needs, we absolutely have to commit ourselves to the intense daily routine of:

Trach care
-the Trach site must always be clean, and is at an extreme high risk for infection. William gets a new sterile Trach placed into his airway every Monday and gets new Trach ties twice daily. 

-Williams Trach requires frequent suctioning of secretions. Hands must be clean, and a clean sterile suction caterer is used for suctioning of the Trach. This is something that is done randomly 24 hours a. Day as needed. William sometimes requires 10 suctions a day, and other days requires 100 suctions. It really just depends!

-William is on continuous oxygen, and we like his blood oxygen saturations to be above 92% at all times. To ensure Williams saturations are above 92%, we use a Pulse Oximetry machine that monitors his heart rate and sats. Depending on Williams sats is the amount if oxygen delivered. Typically William is on a liter flow of 1.5LPM. We use liquid oxygen, but we also have an oxygen concentrator. The liquid tanks are heavy, and you can't be a wimp to manage liquid o2 tanks.

G-Tube with special diet
-William doesn't eat with his mouth, he's fed with a special tune placed into his tummy called a g-tube. William has an intolerance for some foods due to his kidney condition, mad is on a special high calorie liquid formula diet. Formal has to be carefully measured and mixed daily. The formula is fed to William several times per days to his g-tube and then William gets an overnight feeding delivered from a feeding pump. The pump has to be adjusted and monitored properly overnight to ensure William is being fed properly and isn't aspirating fluids. 

-William gets medication into his g-tube a few times daily.

-William requires frequent diapering to keep his bum fresh and clean. No one wants a red tush. 

-William is the silliest, funniest, cutest little dude around and loves to play. Loves to cuddle. Loves to laugh. Loves entertainment. In addition to all the medical care, TLC is the number one task of the day.

Richie and I perform all these tasks like second nature, and are now so very used to the 24/7 care William needs. We do get a helping hand 4x a week from a pediatric home health nurse, which helps tremendously. Especially since we are raising our daughter who has special needs and requires a ton of 1:1 assistance. Outside of our home nurses help, we have a few family members who are comfortable enough caring for William- but we really don't get a break from the intense 24/7 care. 

However, we DO get small breaks of RESPITE when William goes to RYAN HOUSE!

Ryan House is an amazing non profit organization providing respite care to children with life threatening conditions in a home like setting. Staffed with the best you can find Nurses, CNA's, Child life Specialists, Social Workers, Chaplain, And Volunteers with the biggest hearts. And best of all, these amazing people LOVE our special kids way too much. 

The elite Ryan House team know how to manage all of Williams special health needs and equipment. Ryan House allows children like William 28 days of free respite per hear, up to 6 nights at a time throughout the year. This gives parents like Richie and I amazing opportunities for a short respite break. William has been staying at Ryan House since 2010 and we have completely enjoyed our short breaks of respite, knowing William was in the loving hands of the Staff at RH. 

Ryan House asks nothing from families when we bring our special children for respite. This amazing NON-Profit organization relies strictly on community support. 

Please join me in this opportunity to Support Ryan House while having fun doing so. Annually, Team William participates in FUNdraising for the Ryan House Run, and we always participate in the Run at DC Ranch in Scottsdale. Ryan House Run is a family event, and there's something for everyone to do. Choose from the 1 mile Fmily Fun Run, 5k, 10k, and Half Marathon. This year #r4rh is on Saturday March 1, 2014. Check out for more detailed info on the race.

If your interested in donating to Team William, your donation will be a much needed Gift of Respite to a well deserving Arizona Family caring for a child with a life threatening illness. Follow the link to donate, or join Team William for race day!

Team William also is so Honored to be featured by The Turquoise Trunk Mobile Fashion Boutique on Wheels this February! With every sale of the Trendy "Hipssister" off The Turquoise Trunk, a portion of your purchase will be donated to Team William to support our beloved Ryan House!

Check out for the Fashion Boutique on Wheels daily schedule and get your "Hipssister". I just got mine and I love it!

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