Doing well

Good...but very busy...hadn't had a chance to sit down to the computer the last couple of days. Lydia had her hospital follow-up appt with Dr Wood yesterday...he thought she looked good...like she was feeling better since he last saw her. I told him that she was taking in about 16 ounces with a little bit of baby food each day....he thought that was sufficient since she is gaining weight. She gained 4 ounces since her last visit with him last Tuesday. Feeding has changed considerably since yesterday...I already knew that Dr Hollman was good....but she never ceases to amaze me...she said that she expected Lydia's appetite to get better about 2 weeks after weaning the ACTH...Well, today was exactly 2 weeks since her last shot...she took 5 oz before bed last night (and slept all night!!! Hooray!), then she took 4 oz for her first three feedings today! She slacked off a little tonight, but took at least 2 oz for each feeding....so she still totaled about 16 1/2 ounces for the day, but I am very encouraged by her increase in appetite.

PT with Susan today:
Lydia did very well...she is progressing more and more! I am so proud! Susan taught me some practical things that I can do during our day to fit into our routine, since it is difficult with our schedules to fit in "therapy" time. Lydia's optimal therapy times are so minimal...it's hard to always take advantage of them...assuming that no one else needs mommy at that time...or nothing else is going on. It helps to do "therapy" stuff while doing the things that we do already...diaper changes, dressing...

A story for Teresa:
When Teresa (Lydia's OT) came yesterday, she let Audrey help her with Lydia's therapy...while I was meeting with our Family Service Coordinator for Early Steps. Teresa and Audrey worked with Lydia and then discussed the notes to record on her log. That afternoon, Audrey was writing on her doodle board, and she was pretending to write notes from therapy...as she wrote, she said, "we rubbed on her pretend teeth..." Then this evening, Grandma kept the girls while I got a hair cut. Grandma walked in on Audrey playing with a baby doll...she had on a white play glove (little girls' Easter gloves) and she was rubbing on the doll's mouth, cheeks, and stomach. She told Grandma that she was Ms. Teresa. :) All of Elise's therapists that have gotten to know Audrey pretty well have said that she is destined to be some type of therapist when she grows up. We'll see...she's getting pretty good practice now.

Elise is just loving life at her new "school" (BR Speech and Hearing). She is so happy to go there every time. And I see her trying to talk so much more. Today she was watching Barney...at the end of every show, they sing the "I love you" song....I probably don't have to type the words for most of the moms reading this, but, in the song they say, "with a great big hug and a kiss from me to you...won't you say you love me too." We always hug and kiss when they sing it....well, I was in Lydia's closet picking something up...she came and found me and said, "gug" which is Eliseeze for "hug." It was so sweet! She was coming to find me for her hug.
I also notice that she is answering "what" questions so much better. When I picked her up from school today, I asked if they played outside...and, she said, "yes." Then, I asked "What did you do outside?" She said, "Slide." It was very interesting, but she paused first and was clearly trying to remember what she did outside. I am so proud of her.

A note about my cell phone...
My cell phone is not very good at alarming me of voice mail messages...it sometimes takes up to 2 weeks to signal that I have a new message...so, if you need to get in touch with me...please leave a message on my home phone. This is probably a problem I need to look into, but it is not at the top of my list of priorities. :)

I'll call Dr Wood's office tomorrow to be sure that the urine culture came back negative. I'll talk with the nurse case manager from Atlanta to confirm appt's and that Lydia is free of infection, fever, etc. We expect to fly out Monday evening at 5:40. Please keep us in your thoughts and prayers for our trip. Special thanks to Dottie for arranging our flights and sharing her flyer miles with us. Special thanks to Tiffanie for volunteering to be our "travel agent" and "babysitter coordinator" for the trip...two big headaches lifted from my brain. Thanks so much to everyone who is lending a hand to help us these days...we are so very blessed!!