You may remember last month when we introduced you to our new series of stories called “All the Difference”, which gives you a peek at how Blendtec blenders help make a difference in others’ lives. This month we’re back with another story about a darling little girl named Brynlee (as told by Brynlee’s mom).
In December of 2013, my husband and I welcomed the most beautiful baby girl into our family. Although she was full term, she was just 4 lbs 8 oz and her lungs weren’t developed enough to allow her to breathe on her own. We soon learned that Brynlee’s spine and ribs had not formed correctly. Her chest cavity was too small and she could not get adequate oxygen for her body.
After a couple weeks in the NICU we received her genetic test results. Brynlee has a deletion on the 7th chromosome that is diagnosed as Williams Beuren Syndrome. Among many other physical abnormalities, individuals with Williams Syndrome are generally small in stature and usually rank in about the 3rd percentile for size. They often have feeding difficulties and struggle to grow. In addition to these challenges, the diminished capability of her lungs required Brynlee to need a tracheotomy tube and ventilator support. Due to the large amount of breathing support she required, Brynlee was not able to learn to eat. By the time she was allowed to do so, she had developed an oral aversion to food. Her growth also continued to struggle and resulted in the placement of a feeding tube.
After 11 months in the hospital, and with the support of doctors, therapists, and medical home-care, we were finally able to bring Brynlee home. In order for Brynlee’s lungs to grow, she needed to have a titanium rod placed on her ribs to push them apart and give her lungs more space. The challenge was getting her big enough for the rod to fit. At a year old, Brynlee still fit into her three month clothes so this was no easy challenge. Because she is entirely tube fed, it limited her diet to exclusively formula which caused her to have bad diaper rashes and a sensitive stomach. At 18 months old, she was finally big enough to have her first rod placed. After some time, we were able to take her off the ventilator for a couple hours a day. She was breathing better and her energy and stamina improved slightly. However, she continued to have severe diaper rashes, was throwing up daily, and her growth was still slow.
With the many medical problems that we faced daily, we began to focus more on living a healthy lifestyle. It was important to us that Brynlee was eating healthy whole foods, but this is difficult when you only have formula diets to choose from. As we continued to search for more options we had a couple of speech therapists and dietitians suggest that we try blenderized food. A blenderized diet would allow Brynlee to eat whole foods by blending them down enough to be pushed through a feeding tube. Although it seemed promising, we held off because we knew that in order to supply the high number of calories she needed it would mean a significant increase in volume. She already struggled with her current food volume and we worried she couldn’t tolerate it. A blenderized diet also meant that we would need a high quality blender.
After months of no success with formula and nothing else to try, we finally decided that we would give a blenderized diet a shot. We worked closely with a dietitian to figure out a recipe that would adequately meet her daily requirements. After a bit of trial and error, the results have been wonderful! Brynlee has always been between the zero and 3rd percentile for weight, and is now in the 16th percentile! She has grown taller, and more importantly she has added energy, strength, and new zest for life.
In the few months that have passed since switching to a blenderized diet, she has started to crawl, walk with a walker, and is now walking entirely on her own! Her diaper rashes have almost disappeared and her vomiting has practically stopped. All the while, the increase in food volume has nearly gone unnoticed. Her increased energy has significantly improved the amount of time she spends off the ventilator. Less than 6 months ago she was only off the ventilator for a couple hours a day. Today she is off the ventilator the entire time she’s awake.
The outcome of a healthy diet has made such a dramatic difference for Brynlee. She has been given the opportunity to start living like a normal two-year-old. Her new found independence has increased her desire to move and explore. She constantly wants to hold our hand and take us wherever she wants to go. She loves to be outside, cuddle, give kisses, jump, read books, play ball, and listen to music. As her parents we have been overwhelmed to see her doing so well. Watching her learn and progress has been the highlight of our lives.