Tuesday, July 15, 2008
Still need your prayers....
Hello to all of you! Finnley is doing well despite a few recent setbacks. It has taken me a few weeks to come to terms with them and to be okay with talking to people about them. So I apologize if you are reading about them before I talk to you personally about them. I also hesitate to call them setbacks because Finnley seems to overcome everything negative that is said about her condition - she doesn't like being told she can't do something!
While her head is growing and her soft spots are still there, it is in the 3rd percentile and typically should be growing at a faster rate. The doctors have not given me any explanation for this or for what could happen if it doesn't grow at a faster pace. It's the "just wait and see" answer we seem to get each time and it's driving me CRAZY. I honestly think that she is such a mystery to them, they just don't know and they don't want to give me false hope.
About a month ago, Finnie's arm began to jerk a bit here and there when she was waking up. They got a bit more regular so I took her into the neurologist. He said they are Myclonic seizures and that they prescribe anti-convulsants for them to make them stop. These are the least intrusive kind of seizures and he said if you have to have seizures, these are the kind that you want. (I guess he thought that would be good news to me...)The medicine she is on has slowed them down but hey are not fully gone. The seizures don't hurt and don't even seem to bug her but we need to stop them. I am looking for alternative methods to getting rid of them as opposed to high powered drugs that could slow her learning and physical movements down.
We also took her back to the eye doctor for her lazy eye which we are patching for 1 hour a day for the next three months. The eye patches are made for little girls and feature pink flowers, musical notes and even pink camouflage! She is not a big fan of her new patches but tolerates the hour each day. The eye doctor also diagnosed her with possible cortical visual impairment. It's a condition that her brain isn't registering what her eyes are seeing. She said it looks like she is seeing well some of the time and then other times - probably not much at all. The doctor did say that she can grow out of it and that her eyes are structurally healthy and that there are no eye issues. It's just the communication from brain to eye that needs to improve or she will have poor vision. There is nothing medically that can be done for this so we need to go back to the "prayer works" method!
On a happier note - Finn is doing wonderfully in physical therapy each week! Our therapist comes to the house and sees steady improvement week after week. Finnley is getting more neck and head control and sitting up really well. She is grasping for toys and still loves her musical ones. We also have an infant educator that comes to our home on Wednesdays. She taught me how to do infant massage with Finn and we practice every night. Finnley is getting more used to it and looks like she enjoys herself. (Paul is very put off that HE isn't getting a backrub every night as well!) Sorry - I can only take care of one baby at a time... hee hee
We are so appreciative of your continued prayers and support. This little girl has taught us how to truly love and we are thankful everyday for her being in our home. We love you all and will keep the updates coming!