CHD Week

The month of February is connected to Valentine's Day, however we also use the month to bring awareness to Heart Disease and in particular, for the next week, we celebrate Congenital Heart Defect Awareness Week.  1 in 100 children will be born with a CHD.  2 of 5 of our children were born with a CHD.  We want to bring awareness to the world to encourage more research, new treatments, and cures!  Through the grace of God, his plan for our children's lives, and the advancement in medical science and technology, these kiddos are not only living longer, but thriving.  I get so excited to read about the advancements that are being made, that my sons will likely need and benefit from one day.  We want to use this week to honor our miracles, thanking and giving praise to God, for our happy moments but also embracing our struggles.  When I look at my heart babies and see their daily triumphs of just being alive, I know what love is.  Love is doing whatever it takes for another.  I want to go beyond Valentine's Day, beyond Heart Month, and see funding, progress, advancements, so that my children live the fullest of lives, sharing their amazing stories, spreading Jesus' word, and one day to have the ability to help others in the same way we can help them.

When I look down at the face of my precious boy, seeing the progress he is making in therapy, interacting with his siblings, and starting to feel like our "new home routine" is normal, I am constantly reminded that he is a medical miracle.  He finally rolled from his tummy to his back for the first time this week!  We are thrilled and, of course, make a huge deal cheering him on.  He is still working on rolling onto his tummy, but still just can't pull his big noggin up.  His head strength has come a tremendous way.  He is holding it up for a longer period (almost a couple of minutes at a time). He is still not wanting to use his left hand as often, so we continue to encourage that.  We are working hard on the feeding and tolerating anything in his mouth.  We just introduced a Z-Vibe to "wake up his mouth" as well as give him the stimulus that he needs.  He has learned to clinch his mouth closed and even shake his head no!!!  The kids think it is hilarious.  He had a neuro appointment last week.  They aren't making any changes.  I was hoping to reduce some of his seizure meds; however, he explained that with epilepsy, the longer we can keep him from having seizures, the better outlook.  So for now, we continue with the successful regimen that he's on.  He'll have an EEG in March.

So, as I wrap up, please help spread awareness of CHD.  Although (with the help of my faith in God) I choose to live hopefully, the uncertainty of my child's future is a realistic nightmare.  We cannot cure CHD, however, we fight it off with procedures, medicines, and treatments, living heartbeat to heartbeat.
                                  Our Heart Warriors