Thank You BIG Sister, Lily! I miss you so much!
February 14th! Valentine’s Day and Birthdays to two friends Heather Schueler and Addison Rainy! Happy Birthday to you both!!
On a day when you see hearts, and candies, pink and red, chocolate covered strawberries and roses running ramped through the US you often think of romance and love! This “hallmark holiday,” as I like to refer to it, is celebrated by many. We make a point to remember the love that fills our heart and hope that the feeling remains but the prices don’t. 😉
This year instead of enjoying this holiday celebrating love together as a family we spend it separated. Harper was officially diagnosed with RSV and because her body is so weak from the intense seizures and lack of adequate nutrition from the feeding problems over the last 6 weeks, it hit her hard. We will remain in the Pediatric Intensive Care Unit at Medical City until her lungs are healed and able to breath without the oxygen they are providing. Though Harper is not able to be with her BIG sister, Lily, this Valentine’s Day, Lily makes a point to remember her. This is the Valentine she made for Harper and the heart puppy she got two of so they could be together even though they are apart. One stays with Harper and the other with Lily. What a compassionate 4 year old, Harper has helped us to raise.
This is the last day of CHD (Coronary Heart Disease) awareness week! Currently, Harper does not show signs of suffering heart abnormalities with her rare genetic condition. However, as we begin to understand more about CDKL5 we see that cardiac issues are a possible potential problem she could be fighting in the future. Amber and her family living with CDKL5 disorder for 7 years have recently discovered this heart stopping situation. http://cdkl5amberandus.blogspot.com/2011/12/my-precious-heart.html
So, as you rush about wearing red and pink and picking up those last minute cards and heart shaped candies that say I love you, or smelling the flowers your significant other bought you, look inside your heart and remember some people’s hearts are having to work extra hard on this day in effort to simply survive and they \”do it all for the glory of love!\”!