We were lucky enough to be called by our adoption agency, and asked to consider taking the baby. Not knowing anything at all about Hydranencephaly, we agreed to go to the hospital to talk to the neurologist and see the baby. So we made the three hour drive and met with the neurologist, who looked at us like we were insane and said, "And WHY would you want to adopt THIS baby?" I just remember being shocked and we looked him right back in the eyes and said, "Well, Why would we NOT?"
This neurologist proceeded to tell us every negative thing about Hydranencephaly that he knew (which wasn't much!). He said she would never smile, never make a sound, never move, only cry and her head would grow until we could not take care of her at home. And that was IF she made it that far, as he was pretty sure she wouldn't even survive the drive home!
That was a pretty daunting conversation. We had no experience with special needs. But I asked to see the baby. Best decision I ever made! As we entered the NICU and washed up and gowned, the nurse said to me "She is very fussy and irritable. She has been since she was born." I approached the crib and this little baby was lying on her tummy. I stopped by her bed and said "Hi Baby". Well, she lifted her head all the way up and looked right into my eyes, as if to say "Well, THERE you are! I have been waiting for you". I picked her up and she snuggled right into my arms and just gazed up at me. Of course, I knew right then that this little girl was mine!! I turned around to find my husband in tears, so I knew he felt the same!
And that is how Miss Princess Chrissy joined our family. We have excellent doctors in at Texas Children's Hospital. Chrissy came home at 7 days of age, and on her 8th day she was admitted to the hospital for a shunt. On her 9th day, she had her shunt surgery. She came through it with flying colors and was home 3 days later.
Chrissy has been on the Ketogenic Diet (which helped her myoclonic seizures tremendously), she has had a Vagal Nerve Stimulator (VNS) for her seizures, and she has been on various medications over the years. Her seizures are very well controlled now and she only has one or two tiny ones in a month. Only if she is ill does she have break throughs
Chrissy has had bi-lateral hip surgery, tonsils and adenoids removed, a g-button and fundoplication, tendon releases, and 3 years ago, she was trached.
Getting her the tracheostomy was the best decision we ever made for Chrissy. Before the trach she struggled to breathe properly, she would aspirate on her secretions and she was unable to eat orally because of a failed swallow study. Her tone was extremely high also. Since being trached, Chrissy has had no pneumonias, no real illness to speak of except a virus here and there, and her tone has relaxed significantly. Being able to breathe easier has improved her overall health 100 percent! She is a happy, healthy little girl.
It is hard for us to believe our Chrissy is 10 years old! She has just been a light and a joy in our family and in our lives. She is brave, strong and has the sweetest spirit within her. She may not have much brain tissue, but she makes up for it in sheer will and courage, and her soul is wise and intelligent!
Chrissy is truly a little miracle!! She never ceases to amaze us, and continues to learn and grow more alert and active with each passing month. We are so thankful she is here to show us the true meaning of a full life!!