Sunday, April 12, 2009

Happy Easter

Well, this was suppose to be posted on Easter Sunday, but I still had yet to add pics and if you read the post above you know why it didn't get finished...but here it is:We are having a great day of relaxation today while Tom is off working a shift in the ER (it is rainy and cold today)....since he had to work on Easter we celebrated yesterday with the Easter bunny :) Michael just loves Easter because of all the chocolate! It is so much fun to see and hear his expressions...he was surprised this year with a big boy bike with training wheels. He loved his trike, but he was getting just a bit too big for it. His focus yesterday was all about riding his bike. He fell a few times, but he got right back on. I am hoping for more frequent warm days so we can get him outside to ride. As the cold days keep on coming it sure makes me miss Florida at this time of year....Spring was always my favorite time in Florida!!

As always Sofia and her therapy sessions keep me busy....last week we had an appt everyday....we've had some weeks where we end up with more than one a day. I took her for her evaluation at KU medical center and she ended up just barely not qualifying for the early communication study. They want children that are globally delayed, but they can not include autistic children in the study, so they perform a screening that is designed for 2-3 year olds and she didn't pass. They knew it would probably be difficult for her to pass it because of her age and delays, and they emphasized that it does not mean she is autistic. They test involves basicly seeing how she responds to toys and appropriate play. It was quite an experience because it was an hour and a half of testing and I left the room and watched her on a monitor. They had her sitting in a supportive chair, but you could tell she was getting tired and I think I had a feeling it was not going well. It also gave me an outside view of Sofia watching her on that monitor, and it really stirred the emotions. I try so hard to focus on what she is able to do, and this really made me look again at what she is not able to do. As always, she captured their hearts with her smile and blue the researcher told me that they would consider bringing her back to retest if they are unable to find any other children the fill the 6 spots that are left by the end of April. It was tough on me to go thru this evaluation, but it is all about what is best for Sofia.

But let's talk about the good stuff....Sofia is still working towards times we see her trying to get knees and arms up underneath her body at the same time, but she is not quite there. She can really push way up on her arms and get her belly up, and she pulls her knees together way up under her, just not at the same time. Sofia just gets where she wants to go by rolling....lately she loves to roll into the laundry room so she can bang her feet on the washer and dryer. The other day I caught her in this small storage area pulling christmas bows out of a box I had them stored in. She sure has her curious moments :)

Other good stuff....Sofia now signs "more" when she wants you to play more, bounce her more, blow more bubbles, or basicly when she is having fun and doesn't want you to stop. And she can wave "bye-bye"... she did for the first time when her special education therapist left after a great afternoon of play therapy. It is such a great feeling to see her do these things!!

Our biggest issue is her feeding....Sofia has such oral defensiveness....her appetite is all over the is just so hard to get her interested in food some days. She was doing really good with holding her own bottle and grabbing the spoon to help pull her pureed food to her mouth, and then a couple weeks ago she was feeling sick with a fever and congestion and wanted nothing to do with eating or drinking. Her appetite picked up some, but she just wants me to do all the work. She throws her bottle once she realizes she has to hold it. Anything other than pureed foods are still impossible. She seems to change her mind frequently in what she likes to eat. I feel like we are so far away from her being able to feed herself. I have to be creative in pureeing different types of foods that are packed with lots of calories for my skinny baby girl.

I almost forgot, but we had a little "uh oh" when Sofia decided to fall face first into the deck railing on our patio on one of the rare warm days we have had lately...she cried and was okay within a few minutes....well later that night I noticed she chipped a top front tooth....ugh!! We went to the dentist and all looks okay, but now her gappy smile has a bit bigger gap :) So now I have a child with a gray front tooth and one with a chipped front tooth (same tooth on both kids)...don't I just win the mother of the year award!! Luckily they are just baby teeth ;)

No news from Sofia's latest genetics blood work.

I just got Michael started in swimming lessons...we are just two lessons into it...he is very scared when he first gets to class, but is pretty proud when he is done. He has a drill sargeant of a swim instructor....but I think coach Ann may be just what he needs. I have gotten warnings from some moms about how hard she is, but then others who sing her praises. Michael has learned quite quickly to listen to her! I think she maybe good for him!!!

Hope everyone had a wonderful Easter....check back for more updates!! I am going to work on a post to add as a link that will give a brief overview on Sofia's history for those that are new to the blog or want to know more....keep a look out for it!!


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