Friday - seeing a tiny ray of hope at the end of a year-long tunnel
Friday, March 26, 2021
This week brought an update on my great nephew Finn. It was a true reminder to accept and celebrate our blessings. For those who haven't met Finn in my blogs, he is a true miracle baby. He has a rare kidney condition, encephalopathy, a hole in his heart, cleft lip and pallet, lack of communication between the right and left hemispheres of his brain, etc. This week is HPE awareness week! You might ask what HPE is, so I will give a brief synopsis from the article Finn's mother shared with me. first it is a birth defect that occurs early in the pregnancy and in 97% of the fetuses results in a miscarriage as the brain fails to divide and develop normally. If the fetuses survive to delivery, most of them die before they are 6 months old. All systems are all involved and death can be due to the failure of any or all of them. There is no standard of care because so few survive to be treated. Everything is trial and error. Epilepsy is a really serious problem for Finn as he is on extremely risky medications and is still suffering from multiple seizures daily. But . . . despite all of his challenges, he has already lived 3 times as long as his life expectancy at birth. His parents and his big sister continue to make his life as happy and fulfilling as they can. I find this miracle baby to be an incredibly inspiring ray of hope! Despite the cards stacked against him, God has blessed him with a loving and capable family who love him exactly as he is. They pray for him to beat the even greater odds against them and truly believe he will keep fighting.
I am not going to share all my drama but will try to be a bit more visible as the treatments for my residual Covid long-term problems (congestive heart failure) are beginning to ease the symptoms a bit more each week.
Be blessed, know that you are in my thoughts and prayers and that you matter to me a great deal!