I know a lot of you probably receive my mom's email updates and have already read this but I felt like this was a really nice reflection on Amelia's first year and wanted to share it with everyone.
July 1st, 2010
Amelia is now one year old and we celebrated her birthday (along with her godmother and aunt Shelly's) with a family get-together of about 20 people. Some of our cousins from Massachussetts were in town also and were able to join us for this important event. Amelia was passed around like a football and tolerated all the attention reasonably well. The party took place mostly outside in the Heston's lovely backyard and since Amelia does not like the bright light, she complained everytime she was not shaded well. But she is learning to cope by squinting her left eye lid which gives her kind of a rackish appearance. After the barbeque we all enjoyed a huge chocolate cream cake. Amelia liked the birthday candle and was given a tiny bit of cake on her high chair tray. After pushing it around for awhile and playing with the crumbs, she decided to rub it on her head! Some of it actually ended up in her mouth, but she was not terribly impressed. She enjoyed "helping" Siena and cousin Izzy open her gifts of new toys and cute clothes.
After everyone had gone home and the chaos of the party was cleaned up, DJ, Kristina, Tom and I had a chance to reflect on this most difficult and challenging year in our lives and on how far Amelia has come in such a short time. When she was born we were all terrified of what the future would hold, but now a year later this amazing little girl has taught us so many lessons we otherwise would never have learned. We have been introduced to countless medical personnel who have attended to Amelia in such a caring way and we have been supported by literally hundreds of wonderful people who pray for her on a regular basis and comfort all of us when the going gets tough. Kristina who has always been shy, has learned to be an advocate for her daughter. DJ and Tom have learned to put up with emotional women and to quietly lend their support. I have learned that there are things I have absolutely no control over and to trust that God know best. (This is a work in progress!) Siena is learning the joys and challenges of being a big sister. Amelia has spent countless hours in her car seat going back and forth from all her doctor's appointments; she has been poked, prodded and examined by every imaginable specialist and endured anesthesia and surgery time after time. Even when she is in obvious pain she manages to persevere and will allow us to distract her with a few new toys.
She is in most respects just a typical one-year-old. She crawls all over the place and can destroy a room in a matter of minutes by scattering toys from one end to the other and pulling down everything she can reach. She pulls herself up on anything in reach and cruises along the couch and tables. She loves to open drawers and push buttons and levers. The fact that she can't hear does not deter her, but she prefers to have her "people" in her sight. Head rubs are still her very favorite thing and she often comes over to us to get her "fix". If we don't pay attention she'll lift one of our hands to put it on her head. If we still don't oblige she reaches up and moves it back and forth. When all else fails she rubs her own head! Amelia does not vocalize much, but she does make some babbling noises and occasionally lets out a squeal when she sees her mamma or a favorite toy. She is watching our hands more and has started to "babble" with her hands. Her sign language is emerging, but still very sporatic and all over the place. While sitting in her high chair she often signs "eat" on her forehead and "mom" on her ear or cheek, but she's trying. We can play simple games like hiding an object (like a ball) and she'll try and find it. Of course her attention span is not very long. She's eating quite well from a spoon and not as much food comes out of her nose, so that must mean that her cleft is healing. She will be seeing the plastic surgeon again later this month. As far as we know he wants to wait for further surgeries until she is three years old to allow for more growth of the ethmoid bone. At that time he plans on operating on her nose, eye placement and forehead. Ugh!
There are not quite as many doctor's visits now as during most of this past year, but we are still continuing visits to ENT to make sure the tubes are clear and to occupational therapy to help us learn how to strengthen her core muscles for sitting independently and better balance. (She still prefers to play laying on her tummy or back.) From time to time there will also be visits to the endocrinologist, cardiologist, ophthalmologist, eye surgeon, neurologist and geneticist for follow-up care. I expect that a special dentist will be added to this list and of course, her one-year check-up with the family physician is coming up very soon. And needless to say we are not giving up on her hearing! We still don't have any more information on the visit to the Ear Institute in LA, but Kristina is still working on it. The HOPE representative from California Early Start program told us during one of her home visits never to put any limits on these special children, because she has seen time and time again that they will absolutely amaze you with their accomplishments.
We are convinced that Amelia's progress is due to the many special prayers being said for her. If she can come this far in one year, who knows what can happen in the future?