Kat's husband Scott takes care of their children during the day, including Alex (13), Kaylee (7), Nikkolas ("Nikki") (6), Ashlyn (5), Madilyn (4), and Zoee (2).
Kat is 8 months pregnant.
Since Scott lost his job as a Warehouse Manager at the Salvation Army 6 years ago, he has been unable to secure gainful employment after making many efforts. Fortunately, he has been a huge help as the stay at home dad while Kat works.
It had not always been a struggle for the Smiths but they've always managed to get by paycheck-to-paycheck... until recently.
With Nikki diagnosis with Celiac Disease, the Smiths medical bills and financial hardship has been exacerbated, including due to the requirement to change Nikki's diet to a strict gluten free diet. Nikki has a severe case of Celiac that has limited his growth - at 6.5 years he weighs 32 lbs and is 3’ 5”, well below the standard growth charts for his age. For the last 4 years, pediatricians monitored his growth but were unable to determine why it was severely limited.
In August 2014, a new pediatrician conducted a series of blood tests including Celiac (which is not a common blood test to perform) and a bone age scan. The diagnosis that day before getting the lab results included: "Short stature, Failure to thrive, Failed hearing screening, Failed vision screen, Learning disability, Expressive language delay, wheezing, and growth retardation." Nikki's bone age scan estimated his age at 5 years, something that compounds the later diagnosed Celiac.
Nikki's Celiac was off the charts at a number >100 (non Celiac has a value of 1-4). His next procedure was an endoscopy to determine the damage the undiagnosed Celiac had caused to his small intestine. It was severely damaged from gluten, so severe that he was not getting the nutrients from eating he needs to grow. Without those nutrients, eventually his organs would have shut down.
Finally, there is an answer for the anguish the Smiths have been experiencing – but along with that answer, has come a major change in lifestyle for Nikki. Changing to gluten free, finding what Nikki does and does not like (he's a picky eater), the cost of gluten-free and the trial-and-error basis has significantly taxed the family financially.
Kat and Scott have bought Nikki his own cookware, toaster, utensils, cutting board, rolling pin, etc. to avoid cross-cantamination. They are working closely with the school to prepare and implement a "504 plan".
It’s been a tough road for the Smiths in the past month. Nikki struggles with the set backs of classroom children and his siblings eating all foods, including gluten. They joined some local organizations that are Celiac Disease focused to help everyone adjust to the new lifestyle.
Nikki has 3 months to show improvement in his blood work and hopefully a little weight gain.
They are taking other steps to address his other symptoms and learning disabilities and now testing the other children for Celiac at the doctor's request.
Notwithstanding the struggle, the family remains tight, surrounded by love and their commitment to their faith. They know they will see this through together, as a family, and with the support of their friends and community.
Any help you could provide would be most appreciated.
- Mistrot dit Pachet Cristelle
- Perttu Pöyhtäri
- Marina Pili
- Tony Pace
- Alexandra Origet
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