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Jun 21, 2020 Latest post:
Sep 10, 2020
5,130 days ago in a desperate search for answers, understanding and hope to find healing Alexandra and I met renowned spine surgeon Dr. Lawrence Lenke at Washington University in St. Louis. I knew then he was thought of by his peers as the best pediatric spine surgeon for complex cases. Today I know to my core Alexandra will have the most experienced, disciplined, skilled, talented and deservingly confident pediatric spine surgeon in the world and at the helm on July 2, 2020 at 6 AM at Morgan Stanley Children's Hospital Manhattan NYC when she undergoes surgery on the spine from the base of the brain to bottom of her tailbone .
During that initial visit with Dr. Lenke I pointedly asked, "what does she need to fix this" his very quick answer was" time to grow". We discussed in detail what the possibilities could/would be if/when she got to a place surgical intervention was necessary. The outcomes would be far different on a 6, 9 or 12 month old infant than an almost 15 year old young lady. So many, many people have joined our families prayers since that time asking very pointedly for her to have time to grow. Looking back it's easy to see how graciously God has answered those prayers in Ephesians 3:20 (NKJV) fashion. The time she has had to grow was never expected in the medical formula and was evident by the 3 month trips to St. Louis and eventually annually to New York City to monitor.
Today this site is launched with the intention that it will give a place for everyone to stay connected with Alexandra's care and recovery, receive updates as she makes this critical and necessary next step and as a source for all of your encouraging words for both Alexandra and Gabrielle (who sacrifices being without a mother to support her sister). Your communication will be received regardless if she's in PICU, step down ward, recover floor, hotel following hospital release (until we get clearance to leave area) or starting her 12 month recovery at home. I estimate we will be in NYC 4-6 weeks before transitioning home. My gratitude in advance to my soul sister Vanessa being the lifeline of this site & updates. The daily updates will come under the journal entry tab for those looking for them. On critical days like July 2nd we will post multiple times to keep everyone advised as to her status and progressions. I will also send pics to include from time to time as Alexandra feels ready to share.
We approach this as the start of a new beginning for Alexandra to which she has so bravely embraced. Having been thru surgery many times before we know this will not be easy, but we also know nothing worth having ever is. We accept the path forward and gratefully welcome your prayers for the covering and peace of God and uplifting thoughts during this time. We look forward to coming out the other side with a new beginning.
P.S. - We will keep you updated via the Journal P.P.S - We have made a donation to the Caring Bridge site and do not want any to feel obligated to do in addition. Their solicitations are not part of our site.