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Chromosome Deletion, Russell Silvers syndrome, Spina Bifida & Bronchitis Obliterans Awareness

Meet Tens! #littlestwarriorwednesday

3.5 years ago we had a full term baby weighing 3 lbs and our lives literally fell out from under us overnight. We knew nothing other than we somehow had been given an elf with crinkly ears and bright red hair the size of a banana to raise. 

After 6 months of hospital stays, tests and surgeries we were given lots of scary acronyms that basically told us one chromosome had too much material, one had too little.
Tens has P136 deletion syndrome, Russel silvers syndrome (primordial dwarfism), spinal bifida occulta (in Tens case several malformed vertebrae and tethered coed) and Bronchitis obliterans (lung disease).
A g-tube, membership to dwarfism societies and all manner of therapies were set up. A spinal surgery was done, a bought with RSV was furiously fought and we thought we were on the up and up ready to raise our Changeling child to the best of our abilities. Albeit with constant blood sugar tests, tube feeds, nightly injections and all manner of therapies inpatient and out.
Unfortunately a virus in 2016 once again threw us under the proverbial bus. We nearly lost our little guy, but he pulled through once more. This time with severe lung damage and a new, rare progressive lung disease. Scar tissue now spreads in his lungs faster than his dwarfism allows him to outgrow. This adds stress to his already overworked heart. Our life full of home health nurses, ambulance rides, appointments, oxygen, suction, laughter, tears and lung boogers. I feel blessed daily to get this time with such a special being. Tens is our Trach, Tubie , dwarfism, Spina Bifida, hypoglycemia, hypertension, CLD WARRIOR and he’s pretty damn awesome :). Thank you for reading his story ❤️



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