7-28-11

Gonna sum up the week with one document..because I have been lazy and tired all week.  Brian(OT) said she does amazing at the obstacle course. She loves it. Avery however does not like his student he has working with him. She cries everytime she comes to get Avery. Last time she clung onto Brian...(who up until about a month or two ago she cried wh...en he picked her up)when Brian tried to hand her off to her..  Avery is NOT good with strangers at all. The only thing I can think is that she meets so many different people on a daily basis that she doesn't know who to trust. Avery has been great for Alisha(ST) all week. Alisha just eats her up! Avery said night night Alisha in our night time ritual of saying goodnight to the whole world. So cute! Avery really likes her..maybe becasue she gives Avery Goldfish crackers...who knows, who cares....she is talking.  Alisha reviewed her hearing test and records that the ENT doctor has made on Avery since birth and the minute she read Avery was to have her adenoids removed and tubes put in her ears...she said by the sound of her voice...she would agree. Alisha was anxious to get the records from the ENT for awhile now. I let Alisha know that those things are on hold at this point.  We need to get her heart condition under control before we put her under for anything. This minor surgery turns into something major when it involves Pompe. We originally were gonna do the ears and stuff when Avery got a port put in..but Dr. Stockton would like to wait on that as long as possible. Bottom line, we don't want to risk her life if we don't need to...I would rather have a child with speech and hearing problems than no child at all. SO we will mention ears and adenoids to Dr. Stockton next Friday and see what his current thoughts are on this.
As for PT...Avery has been a stinker lately. Shawn said she will crawl til the cows come home..but will not walk. She came home today without a sticker...I assume it is becasue she refused to walk over to get one. They said she will take one or two step and be done.  UGH! Shawn said this is normal and that she  has a few other tricks up her sleeve to get Avery moving....I will trust her on that! Shawn also reminded me that she will meet us at Avery's physiatrist appt. next Thurs.  I asked her why she wanted to go(in a nice way ;))...and she said becasue I have questions for im regarding Avery and I want to meet him.  How many physical therapists do you know that would do this....yeah me too..none! I love her her! I am so thankful to have Kids in Motion in our lives.
 I also want to give a special thanks to G and G Nagelkirk.  They are WAY over the top..especially since we got the Pompe news on Avery.  They pick up Mya EVERYDAY so she won't have to sit there with me while I wait for Avery. And on days when we get to their house and it is lunch time, Grandma has lunch ready! They bend over backwards for us on a daily basis...and we appreciate it so much. We are so lucky to have them in our lives.  Even the KIM staff say how nice it is and how lucky we are.....don't worry...we know!