We are now almost 6 years removed from our life-changing diagnosis. Each day passes bringing so much joy surrounding our slice of miracle, removing so much heart ache and anxiety we once felt surrounding our initial 17 week visit. Six years have flown by, changing every fiber in us to make us more adaptable and flexible - opening our hearts and eyes to a world that was so unfamiliar before. Wheelchairs, catheters, shunts, and bowel regimes are all apart of our daily living, but that doesn't define us. That doesn't stop us from living this life joyfully, because our Elam shines so bright.
In a 17 week ultrasound, we were told we were having a boy, but devastatingly, he was likely not to survive long after birth. Those words shook us to the core, allowing us to feel a level of pain our hearts had never dreamed of experiencing. After a weekend of agony and grief, we finally heard Spina Bifida uttered for the first time - and we cried happy tears. He was going to survive!
Prenatal ultrasounds showed:
-ventriculomegaly
-bilateral clubfeet
-Chiari II malformation
-slightly dilated kidneys
-spina bifida opening from L3-S2
Equipment he has now/has used:
-AFOs
-Homemade BumboWheelchair (as a toddler)
-Pediatric wheelchair (now)
-Rolling Stander
-Hydrophilic catheters
-VP shunt
-Balloon enema
-Back Braces (before magic rods)
-Magic Rods (scoliosis correction rods)
Here are a few links of the beginnings of our journey:
Our First Diagnosis
Diagnosis: Survival
Considering In Utero Surgery
Vanderbilt Children's Hospital Evaluation
Letter to Little Brother
How We Are Doing (while we were still pregnant)
Elam’s Birth Story
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