AVA in a nutshellAva struggled with an especially low heart rate, a body covered in hair, and extremely cold extremities. We had to put 3 or 4 layers of socks on in an attempt to keep her body temperature up. Her body was in full on starvation mode and was doing its best just to keep her alive. She had a gtube placed the week after Christmas and ended up being flown to a Children's Hospital 250 miles away in order to monitor her for refeeding syndrome. (If you aren't familiar with it, it happens when someone is starving to death and then starts receiving nutrition. The body doesn't know what to do with all of the nutrition and can start to shut down...it can be life threatening and is taken very seriously) Almost a year later she is a healthy 40 pounds!
Her right leg had been so unbendable we feared that it was a true contracture and she would never be able to bend it. Upon coming home, she was having muscle spasms constantly, it was nearly impossible to keep her comfortable and she spent a lot of time screaming or crying from pain. We've been working with a rehab doctor from Children's Colorado as well as getting regular therapy and her knee bends perfectly now (with the help of some good muscle relaxers.) She is also MUCH happier. We did discover that her hips were completely dislocated which was a BIG cause of her pain and spasms as well. She basically had been holding her right leg so tightly to avoid the pain that movement caused the hip. In October of this year she had bilateral hip surgery to correct both hips. Fortunately they were able to correct the left side with some major bone reconstruction on both the hip and the socket, but the right side was unsalvageable and the surgeon had to completely cut off the top of the femur and the hip. She has been in a full spica cast for the last 6 weeks, but she is so much more comfortable that we are beginning to see more consistent smiles from her.
Finally, we did discover that she is completely blind. There is nothing "wrong" with her eyes themselves, but the part of her brain that that controls vision has been affected by her cerebral palsy so she is unable to fully receive signals. We're all learning how to interact with her in new ways and finding what senses she wants to interact with. She is such a sweet, quiet little girl. We are so grateful we were able to bring her into our family.
|In the apartment in Bulgaria on pick up trip|
(We also had to have all of her teeth surgically removed
|11 Year old "Yana" holding her 8 year old sister|
|First family picture! Christmas Eve 2016|
|She's such a princess... and look how long her hair is!!|
Lincoln/ "Nigel" in a nutshell
Lincoln had some definite autism flags. I was super worried about how he was going to handle being outside of his room, much less the orphanage, then the country. In March we found that he had a huge blood clot near his brain and spent a few weeks in Children's hospital followed by months of blood thinner injections. While in the hospital, an NG tube was placed and he quickly learned that he didn't need to drink from a bottle or eat from a spoon to be satisfied. After years of being force-fed boiling hot to super cold food with less than 3 minutes to eat a 12 ounce meal he was D O N E! He has such huge issues revolving around food and eating that the hospital determined it would be best to place a long term feeding tube while we work on teaching him healthy eating habits. It will be a LOONG process, but he's much happier and healthier with this plan.
Because of the size of the blood clot, we were told it would probably never go away completely, but our goal was to keep it from growing. In August we had it rechecked and were relieved to find that it was COMPLETELY gone. A HUGE answer to prayer!
He's starting to walk, but HAS to be holding onto someone's hands or the wall. Learning to crawl, he's discovered he can move while pushing his feeding pole all over the house. He's giggly and cuddly and LOVES to play with daddy. While we have dealt with some sensory issues, he has transitioned really well and tolerates being around new people better than we could have hoped.
|At therapy, working on standing.|
|Just a happy little guy!|
|One of the few good pictures I've been able to get with him.|
He's super camera shy
|Snuggling with daddy|
|My little newsy!|
Okay, I know this isn't the best update or the best written, but I wanted to get it up before I completely forgot. To each of you who has prayed and followed our family, THANK YOU FROM THE BOTTOM OF OUR HEARTS. Life is harder and busier than I imagined possible, but we trust that we are on the path God called us to and knowing we have been able to make a difference in these little lives is unbelievably humbling.