Help Little Leo

For: Leo Knox Yoder
Organizer: Joshua & Ashley Yoder
$20,113
of $20,000 goal.
Raised by 261 donors
100% Complete
This fundraiser is closed. Thank you for your support!

The Story

Leo Knox Yoder was born 8 lb. 11 oz. and 19 in. long. Before we were able to hold him, he was whisked away to the NICU at UVA medical center in Charlottesville, VA. Originally, an infection was suspected as well as respiratory problems. Later, encephalopathy(brain abnormalities) and lack of normal baby reflexes were observed. We waited until Ashley was released from the hospital to see Leo. He was the most beautiful, pink, chubby, and bigfooted baby we had ever seen. He was our baby, and he was covered head to toe in monitors and life support.

After days of testing and conversations with doctors, the leading explanation for Leo's condition was a neuro-metabolic disease, the testing of which will not be back for at least another month. There is no cure for this disorder. It means that the chemistry of his brain does not work properly. We decided to take Leo home and live the rest of his life with us and the help of hospice care.

Thank you so much for all of your thoughts, prayers, and support. We are so thankful to have such loving friends and family. We will continue to need your love and support in the future.

Fundraiser Updates

Posted on June 19, 2013

Posted on June 19, 2013

We did it! Well, really, YOU did it! We can hardly believe how much support we have received -  it has come in the form of monetary support, of course, but also in letters, e-mails, meals, hugs...We have so appreciated every last bit of it. Thank you, thank you, a million times thank you!

As of yesterday, Leo has hit the 6 week mark. It's unbelievable that we have made it this far. Leo now weighs 10lbs, 2oz and has grown about 3 inches since birth. He feet haven't slowed down either.  Bath time is still my favorite time of the day, even if Leo can't decide if likes it or not. Leo has started smiling a lot in his sleep and I like to think he smiles when he is awake as well. He sometimes snorts as he is falling asleep and I like  to think his favorite place to be is snuggled up on our chests. Josh's favorite thing to do is burp him because he squirms and sighs and makes all sorts of funny noises. Leo has become a lot more vocal- which we like, unless it comes in the form of a cry. His hair shines golden and sometimes looks blonde, sometimes light brown. His blue eyes have begun to get bursts of green in the centers, like mine. Leo grabs my fingers and holds tight, gripping tighter every so often and giving a reassuring squeeze. He wakes up every morning bright eyed and happy - and that, without a doubt, is how we get through the uncertainty of each day. -Ashley 

Posted on June 18, 2013

Posted on June 18, 2013

Leo is 6 weeks old today! We can't believe the time has flown by so quickly! Thankful for every  minute. 

Posted on June 14, 2013

Posted on June 14, 2013

This last month at home with Leo has been spent figuring out the best ways to care for him and watching for small signals that alert us to his slightest discomfort and trouble breathing. It has been a full time job, one that continues around the clock, like caring for any small infant. Our job, however, is one that certainly keeps us on edge and steals the possibilty of much restful sleep. Thank goodness there are two of us to take turns because I feel like it would make it much it harder to handle this as well as we are. Nighttime isn't always hard, when Leo is truly sleeping his breathing is fairly regular. However, he is awake and alert much more than he used to be, it just happens that 50% of that awake time happens at night.

The last few nights we have begun feeding Leo with a feeding pump. It provides him with a continuous (slow) flow of formula which helps him get an adaquate amount of calories in a 24 hour period. We tried increasing his volume of food during normal feeds but we found that it was hard on him to tolerate this larger amount. In many ways it has been successful- he is starting to get his chubby cheeks back. On a perfect night we would only have to wake to give him medicine at 2am and change his diaper. During a more realistic scenario, I am awake throughout the night hours, changing his diapers often and suctioning his mouth and throat to clear his airway.  The suctioning is only necessary when he is actually awake & last night that was most of the time... He also woke up throwing up once but really seemed quite unaffected by it once the episode was over. 

We have also realized that Leo does much better when he isn't handled too much. His time being held by us (and especially friends and family) must be very limited because of how easy it is for him to start choking. As much as I would love to cradle him in my arms as much as possible, I'd rather see him resting peacefully beside me, than turning blue as I tried to hold him. Because we know that he can't be held as often, it makes it that much harder to leave the house. Josh and I take turns going out and running errands because A: we both need time out of the house and B: We can't risk him having a spell in the car.  I almost feel like we should bring a small "bed" with us when we do take him places so we can always have a place to lay him down. Just over a week ago, we were still using his carseat and had taken him to a few restaurants and the grocery store with us. He has done fine most times, but one or two scares are enough to make us think twice. Today we are getting a "car bed" for him which should hopefully make transporting him much safer. 

It's incredibly difficult  to comprehend that while physically Leo is growing and getting stronger, we are also painfully more aware of his sensitivities and limitations. Not to mention that any given day could be his last with us. When we first brought our baby home, I used to yearn for normalcy. Now I am realizing that this IS our new normal, at least for this chapter of our life. -Ashley 


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