Team William 2012
Well HELLO! I am writing to tell you why we RUN and PARTICIPATE in the Annual Run for Ryan House at DC Ranch. My name is Crystal Leon, and we have formed a special team to participate in the annual event for a very special little boy, my son, William George Leon.
William George Leon was born on November 3, 2009. Leading up to William's birth, we knew William was going to have some health complications. He was only 2 pounds 14 ounces and 14 inches long at when he was born at full term. Our medical team discovered that William had several birth anomalies, and no blood test determined a specific syndrome. We were left to identify all of William's anomalies, and provide medical treatment. On his day of birth, a PCH Neonatologist had a very uneasy conversation with us regarding William and his health condition. He told us he could not make any promises, as he did not know what our new little babies outcome would be, but rest assured that he was going to try everything in his power to do what our baby needed. He was in the PCH NICU for 8 weeks, growing and receiving medical treatment until he as strong enough to go home. During those 8 weeks, we did alot of learning and preparing to take our new medically fragile baby home, and care for him on our own. Our little baby boy was born with several rare anomalies which include and are not limited to cysts on his brain, a coloboma on his left iris, cleft pallet and he is unable to eat by mouth leaving him 100% tube fed, had 4 holes in his heart but over time 3 of the 4 holes closed up and the remaining hole called an ASD (Arterial Septal Defect) in the top portion of his heart is causing him to have a mild case of pulmonary hypertension, fused horseshoe shaped kidneys with cysts on them which are functioning normally other than high blood pressure, and has a hypospadious (A deformity of the male parts) and in which his male parts are functioning properly. When we were sent home, we all did not know what to expect for William;s growth and development but we always hope for the best.
Over the last 2 years of William's life, he has endured 20 hospitalizations and 14 surgical procedures at Phoenix Children's Hospital. He is full care, does not walk, talk sit up, eat by mouth or use the restroom. Most of his hospitalizations were related to respiratory distress until one of his last hospitalizations which resulted in respiratory failure. At that time we had a trachestomy placed into our baby's airway and he had to use a ventilator for breathing support for some time. With all of William;s medical needs- it takes someone to care for him around the clock. Tube feedings, vitals, monitoring, suctioning and maintaining his airway, maintaining many forms of medical equipment and oxygen. Essentially I sleep with one eye and one ear open. We do have a home nurse that comes to help with our little William's high medical demands Monday-Thursday. Those days are the greatest, and I love having the help of a Pediatric Home Health Nurse. Other than the short 40 hours a week that we have a helping hand around the house to manage our medically fragile baby, we get no other breaks. Its full time 24/7/365 care that we as parents have to provide to our son. William's medical needs can limit where we go and what we do depending on how well our little man is doing. We can't just hire the neighborhood babysitter to watch him because anyone that cares for William has to know and understand his medical needs and be able to manage that. We virtually have to keep an eye on him at all times, to ensure that he remains stable. If all of his medical needs aren't met properly he could become very sick and in his limited and compromised health condition the smallest common cold can be compared to a severe bout of pneumonia for William.
In August of 2010- we learned of Ryan House. After touring, William had his first Ryan House Campout in October of 2010. After utilizing Ryan House and discovering all the greatness it has to offer along with meeting some of the most AMAZING health care professionals that are a part of Ryan House we as a family felt like there was a small weight lifted off our shoulders.
-You mean to tell us that you are going to care for my child, make him comfortable, administer meds, manage his tube feedings, central line care, trach care, and other site care? Bath Him? Play with him? Read him stories? Bring in volunteers that have pet therapy Doggies? Let us REST undisturbed in the Family Suite? AND our whole family can come along? Is this a dream or what!? You call this a short period of Respite- this is HUGE! More than a short break- its rejuvenating. It's like wiping the chalkboard clean. Starting the day fresh. After getting this short period of Respite provided by the AMAZING RYAN HOUSE we feel like we are on top of the world. Caring for our child's high medical demands on a daily basis is very tiring, and something we cannot slack on.
We are super proud to be William's parents, and we are participating in the annual Run for Ryan house to show our appreciation for what Ryan House has done for us. Ryan House is an amazing line of support for our family! We are fundraising with high hopes of reaching our goal- Last year Team William was the #1 team in fundraising as we had the highest dollar amount raised by a team! Ryan House is great resource for our Arizona community who have children with life threatening and limiting conditions. We are thankful to be a Ryan House Family. Thank you Ryan House!
Sincerely,
Richard and Crystal Leon
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