… And Her Help With “Make A Wish Foundation”
I would like to introduce one of the most amazing individuals I have ever known, my cousin Ella, and her amazing mom as well, Jami. (Jami is the daughter of Norma, who was the one of the cutest-ever flower girl in our wedding over 51 years ago).
Anyone who knows Ella has all good things to say about her. I’ve chosen a quote by her Aunt Jessica, which was posted on the occasion of Ella’s 12th birthday last fall.
“You are a sweet and tender miracle with a heart that is so sensitive and empathetic toward everyone. You are the most intuitive young lady. You see the needs of hurting people and you reach out with your gentle look of concern and with your quiet voice asking them how they are doing—and you genuinely and intently wait for an answer. I love you and thank you for your testimony of God’s goodness in your life despite your many years in and out of the hospital …”
Ella was born after only 26 weeks of growth in the safety of her mom. Due to complications—some managed well by the medical community and some not managed well—Ella has endured unimaginable medical conditions and interventions. Once again, this is best explained about 6 years ago by her Aunt Jess, who is a PA.
“… Ella … weighed only 1lb 12oz. She spent months in the NICU and then went home, only to return to the ER shortly after with a small bowel volvulus (twisted), which caused the bowel to die. She had to have the dead bowel resected, leaving her with a “short gut.” She has had multiple surgeries and procedures (nearly 30) since then to help her grow. Without much of her small intestine she cannot absorb the nutrients she needs to grow. So instead of eating like we do, she gets fed through a G-tube (an external tube in her stomach that she gets fed whole milk several times a day) and a central line (an IV into a major vein which she gets TPN every night while sleeping).
“TPN is total parenteral nutrition. One of the risks of TPN is getting a “fatty liver” and can cause eventual liver failure. She is also always at risk for a central line infection (like she just had), diarrhea (her mom and dad change her diapers 4 times a night), bacterial overgrowth in the bowel, which causes her to vomit often. These are just a few of her risks and complications. BUT, she is still a little girl who loves to laugh, play, read, go to school and church, snuggle and has a real sweet, sensitive heart for people. She draws people to her because of how she reflects the love of Jesus! Her child-like faith is stronger than anybody I know, and I love her for showing me that faith like a child is what Jesus wants!”
For many of the years Ella had the tube, she needed it for twelve hours. It was necessary for Ella and one of her parents to be home and to hook up the nutrition by a certain time in the evening in order to provide the full 12 hours of nutrition. To follow up, one of her parents had to be home with her in order to disconnect the feeding in the morning. Every evening and every morning. So, 7 to 7, 8 to 8 or 9 to 9 or, if they wanted a late evening, 10 to 10. (Do the math!) And, yes, it had to be a parent. Most medical professionals are not trained to administer nutrition in this way.
A recent bout with pneumonia set off a chain reaction of medical emergencies which resulted in Ella’s first hospital stay in almost 5 years. (Contrasted with her first 3 years of life–there was never a 3-week period when she wasn’t admitted to a hospital.) Because Ella lives 2 hours away from the specialized care she requires at Boston Childrens Hospital, these countless hospital stays could have—honestly, I can’t find the words for how enormous the impact was on Ella, her mom and dad, her grandparents, and the wonderful cadre of extended family and friends.
Yet, her family is one of the most adventuresome and loving families I know. Their lives are rich with social engagements and exploring all the sights and activities the world around them has to offer. I am pleased that they were nominated to receive a wish through “Make A Wish Foundation,” and Ella was selected to make a wish in April of 2013. She chose a trip to Disney World.
For more about her unique journey, please tune into my grandson’s twitch.tv account at 4 p.m. on Thursday, January 23. (He actually is broadcasting from 9 a.m. to 9 p.m. as a fundraiser for “Make A Wish Foundation.”) Ella and her mom will be featured at 4:00 p.m. followed by a session of Mario Cart played by Ella and her 3 siblings. Ella is looking forward to telling you about her experiences and providing incentives to make the wishes come true for other children.
If you haven’t had the opportunity to participate in the wonderful opportunities provided by “Make A Wish Foundation,” please feel free to consider a donation. If you have donated in the past and would like to consider another contribution, we have a few easy ways to do so. I have created a donation site on my Facebook account; you may tune in Amos’s twitch.tv account and donate to “Make A Wish” through that medium; or you may donate directly on the “Make A Wish” website.
Wendy’s Facebook Campaign (see page on Facebook)
Make A Wish Foundation https://wish.org/