Friday, July 25, 2008
I can hardly believe it has been over five months since this angel came into our home. It's been the longest and yet the fastest five months I've ever lived through! I just updated the "One Month at a Time" slide show and will do so every month so you can keep up on her size and expressions! Paul thinks it's funny I have a "play" button on my belly...
Finnley's physical therapy and infant teaching are going great! She makes progress every week and works hard at coordinating her body each day. Amy is helping us work on rolling over and getting all of her bits to move in harmony. You have no idea what it takes to do such a simple movement. I get tired just watching her try! Wendy is helping us work on neck movement and grasping for objects. Finn seems to love Wendy's voice and follows books much better when Wendy reads them to her. We are so grateful for these two teachers - we couldn't do this without them!
Angie & I are enjoying summer vacation. She reads most of the time - can't get her away from those books!! (Not that I am complaining!) We are working on crafts for Christmas and some new clothes for school. We enjoyed some perfectly ripened peaches and strawberries the other day from a farmer's fruit stand on the side of the road. I mention that because it falls in the category of "stopping to smell the roses" once in awhile. We get so caught up in the daily routine and problems in our lives, we forget that God has given us so much. That juicy peach reminded me of that. We have so much to be grateful for and we should always focus on that instead of all the yucky stuff in our lives. Remember to thank the Lord daily for His gifts.
The doctor wants to increase Finnley's current medication and add another one to stop the Myclonic seizures. I am trying another method first. I started her on essential oils and even though it has only been a few days, her smile is coming more frequently and her language is louder. Finn still enjoys her nightly massage and now we have added lavender oil to calm us BOTH down from a long day! Her seizures were less today so I am praying that continues. She is a different baby without all the medication!
The downer part of our summer is that our Mexico trip had to be cancelled. The doctor wouldn't let Finn travel out of the country because of her seizures and the possible lack of good medical care. We tried to rearrange it so that Paul could go down for at least a week but the tickets had doubled in price since we purchased 6 months ago and it would have cost way to much to make all of the changes. It has really crushed all of us - especially my wonderful older brother who planned every detail of the trip! Hopefully next year we can re-plan and take that trip. Thank you Jon for all that you did - I hope I can make this up to you someday!
We appreciate your continued prayers and support on Finnley's behalf. A miracle that we all get to share in is rare. Not a day goes by that I don't feel that in my heart.
We love you!!
Tuesday, July 15, 2008
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!
Monday, July 7, 2008
Hello everyone -
We spent the morning of the 4th at the Del Mar fair. It was a beautiful day and Finnie did great! Angie brought some friends and they did it all! We even left the fair WITHOUT eating one deep fried anything!! (I was tempted to try the deep fried Oreos but the line was just too long!) Looking back - it was probably a blessing in disguise!! We were able to see the fireworks from our backyard so we didn't have to fight any crowds. Finnley liked the lights in the sky and even our new dog didn't seem bothered by them.
Here are some pictures of Angie & Finn in their 4th of July outfits. We love you and will give you another update soon!