Good day friends!
I hope you are all doing well! Things have been busy here in Richmond and our travels have taken us great places for great things. We recently traveled back to Delaware for the weekend. Nicholas had his annual cardiology appointment at Children’s Hospital in Philadelphia. Dr. Alexander Davidson has given Nicholas and Jacob great news!
Why was Jacob at the cardiologist you say? Well, three years ago Jacob was diagnosed with a heart murmur. It is called a mild pulmonary stenosis . A “thickening” of one of the valves and the doctor at the time said not to worry, but to revisit in three years. We took him to Nicholas’ doctor and had him checked out and he is doing super…nothing to worry about!
As for Nicholas, he was given similar news to his repair to the atrioventricular canal defect (The valves that separate the upper heart chambers (atria) from the lower chambers (ventricles) are abnormally formed. Often this results in one large “common” valve rather than two separate valves.) We have been worried since his surgery at 8 weeks old that he would need an additional heart surgery by the time he is a teenager, but the doctor seems to think “IF” he should need it he would be an old, old man! I like that kind of news!!!
We also Marched on Washington! The National Down Syndrome Society has a “Buddy Walk” on Washington each year! The Buddy Walk on Washington is an annual two-day advocacy experience that brings the Down syndrome community together to advocate for public policies that impact the lives of people with Down syndrome and their families. Advocates come face to face with Members of Congress and their staff on Capitol Hill to advance education, research and healthcare for people with Down syndrome. Nicholas met with the likes of Congresswoman Cathy McMorris-Rodgers (WA) and Congressman Pete Sessions (TX) and the staff members of Senator Chris Coons (DE), Senators Warner and Webb (VA) and Congressman Eric Cantor (VA).
We told our story!
We also asked that each lawmaker sign the ABLE Act. It is called the Achieving a Better Life Act. It would be a way for families to save money for their children with disabilities… without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. It is similar to a 529 by providing individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. Currently, people with disabilities are not allowed to “own” more than $2000! If they do, they could lose their benefits from the government. We want more for our children! We want to be able to save for Nicholas’ future just as we are saving for Jacob’s!
If you feel compelled, call/email/tweet/ your local representatives and ask them to support the ABLE Act!
Please enjoy the photos!
Many blessings to you and yours,
Traci
