AVERY JORDYN KOLRUSS, has been a wonderful new addition to our family.  It was a tough decision when to have another child after all the challenges we've been through with our 3 year old CHARGE'r Ethan.  He has a tracheostomy and a GJ-tube, so he keeps us very busy with his care.  But it was never our intention to have a one-child family, and we had seen other families having healthy children before or after having a child with CHARGE. Our geneticst told us there is less then 1% chance of having a child with CHARGE reoccurring, which is still a risk, but after having a child, that was 1: 12 000 chance.  Odds and percentages don't mean much to us anymore. Our decision to have another child was not "if" but "when".                  

We decided that Ethan needed to be at least walking before we could consider becoming pregnant. (he does not have vision or hearing impairments).  Ethan began walking shortly after his 2nd birthday and now he and his sister are 37 months apart! We wanted to give Ethan a sibling, so now we have! Avery is healthy in every way, and we were amazed every day how different her infancy has been from Ethans. She achieves milestones no problem, while we worked with Ethan just to get him to roll over. And how we cheered when he finally did it. It seemed like Avery only tried for a few days, then over she went!  I am also able to breastfeed Avery where as Ethan had such a poor suck/swallow he has been tube fed since day one.  Ethan still does not eat by mouth, so delving into the world of food and eating with Avery will be a new adventure. 

We are learning how important a good support system becomes with additional children. Ethan had RSV this winter and we had him into emergency three times in one week.  Having family and friends around to look after Avery allowed us to focus on Ethan's needs.  It has been alot of work having two kids versus one, especially since Ethan is already the workload of two!  But it is worth it.  Avery is a really good baby, very happy, and everyone loves to tell us how beautiful she is. Ethan isn't too sure of his new sister, even though she has been around for five months.  We know in our hearts that one day he will be thankful that we gave him a little sister to be part of his life.

Melanie and Dan Kohlruss