As Mia begins fourth grade, she weighs 35 pounds and is 45.5 inches tall. Since December of 2015 she has gained less than two pounds and grown less than three inches. There continues to be concern over Mia's lack of growth, however, following our most recent doctor appointments, this lack of growth may be helping her maintain a healthy kidney and spine. Both doctors are quick to point out that their concern should, in no way, make us want to keep her small. We need to try to feed her as many calories as possible and they monitor her closely when she grows.
After Mia's last hospital stays, we were referred to a nephrologist, kidney specialist. Mia is at extremely high risk for kidney disease because she has a neurogenic bladder (basically one that doesn't work correctly), a single kidney with some reflux, a pelvic kidney and reoccurring UTIs. Mia's kidney, although bigger than a normal kidney of individuals who have two, is still on the small side. Individuals with one kidney usually have a kidney that measures in the 80-90th percentile and hers is in the 50th. A single kidney has to be significantly bigger in order to do the job of both kidneys. The question becomes will her kidney be able to keep up with her growth? We cannot determine that because she is not growing.
Having a single, pelvic kidney is rare. Two nephrologists at Strong assessed Mia. One doctor has never seen a single, pelvic kidney and the other has been in the field for 20 years and "has seen it, though it is rare". Both were very concerned and uncertain about her prognosis given their experience and Mia's multiple medical conditions. Dave and I both agreed we should reach out to Cincinnati, where her bladder surgery was completed. No surprise that Cincinnati is very concerned as well. Cincinnati wants her bladder augment to be evaluated by the Urologist who performed her 2015 surgery to make sure the bladder is functioning properly. According to him, there is an increased chance that her kidney will eventually not work very well. "Most experts agree that a single pelvic kidney in a child with her multiple birth defects will have some degree of dysplasia, meaning that it did not develop fully well." Puberty is the time we will begin to see kidney function decrease.
The thought of returning to Cincinnati is something we are not ready for but certainly will do if she continues to have UTI and kidney infections. Every doctor agrees it is imperative we get her infections under control. We have started a new antibiotic, pushed directly in the bladder via her catheter, and are hopeful that will break this cycle we have been in.
Next was her orthopedic appointment. Mia's lower, lumbar, curve is stable which the doctor says is due to her lack of growth. Unfortunately, she has developed a significant curve in her upper, thoracic, spine. Again, the unknown is what will happen when she grows. The doctor "fears it is going to take on a life of it's own" as she grows.
For years Dave and I, along with many family and friends, have prayed that Mia would grow, feeding her every chance we can get. Today, in some way, I feel thankful she has remained small. To think of all the possible complications that may come with growth frightens me. I wish I could bottle her up and keep her from growing. Then I look at those spindly legs and how her classmates tower over her and I pray she grows. Overall, I pray that Mia will grow and defy her odds as she has done so many times before!
On a positive note, Mia and Gabriella love their fourth grade teachers. Gabriella's nerves over Mia's health have gotten much better since school started and her stomach issues have disappeared for now!! It's good to be back to some routine and normalcy!