Our Tiny Warrior

Monday was a hard day for Echo. Her Mommy had to go back to work. Her Daddy had the day off but Echo wasn’t having any of it. It was the first time in 3 months that her Mommy wasn’t there.  Tuesday went a little better but Wednesday brought another big change. Echo was dropped off at the babysitters. Good thing for everyone involved that Auntie Kait will be caring for her while Mom & Dad are at work. Her cousins were so excited to “help” babysit. Even Maggie the dog kept an eye on her.

More good news as Echos recent blood tests showed that her liver has completely healed. Even the email from the liver doctors office stated that it was remarkable considering she was in complete acute liver failure when they first saw her.  

Echo was seen by her cardiologist last week. He was almost speechless. He said the echocardiogram showed the thickening of her heart wall had decreased and if he hadn’t seen her in the hospital or known her family history, he wouldn’t think there was a problem. He called her a “choose your own adventure” baby and didn’t really know how to explain her amazing turn around, but we do. We owe Echo’s miraculous recovery to our loving Heavenly Father for hearing the prayers of so many family & friends and answering them. Echo went on her 1st camping trip last weekend. She loved the campfire & riding on the 4 wheeler. So grateful for the memories we are able to make w/her.

The genetics counselors contacted Chris & Lyza to let them know that Echo has tested positive for the gene that causes hypertrophic cardiomyopathy. She isn’t alone as many of her Nana’s family has this heart disease. She has a follow up w/cardiology next week to discuss long term plans but we are glad that it was discovered early. Many people w/this start having symptoms in their 30’s so she has a head start on keeping an eye on it. She also has a great uncle who is trying an experimental drug that can hopefully help her in the future. Other than that, she is doing amazing! She loves to eat & has reached 8lbs 4ozs. She also loves to snuggle, sleep and be outside.

From Mommy Lyza… Had Echos appointment with the liver doc today. He is supper impressed with how good she looks. He said that her labs are looking really good from what came back already. He told us to finish what we have left of the liver medication, and then she can stop it, and we can stop the acid reducer. We have to wait to see what her vitamin D lab shows but may be able to stop that medication as well, so she will only be on 1 med. She gained some weight since leaving the hospital and is now at 8 lbs 4 oz. 😊 he said as long as our other providers agree, we can move her feeds to every 4 hours at night as long as she continues to gain weight. 

Echo had her follow up appt with the eye dr. They need to watch closely for side effects from the viral meningitis. She passed w/flying colors & doesn’t need to go back for 6 months. She is also doing well to take all of her feedings by bottle so she got her NG tube out yesterday. Good things happening! Guess we should add that she has 4 cousins that adore her.