Appt with Alberty

Sorry I've been posting sparingly lately...just busy with work and everything else. We're good! Except, Lydia woke up this morning with her yucky congestion again!! Poor baby! I have a feeling that is the cause of her decline in appetite...she has been taking about 2 oz at each feeding today. But, the good news is that Dr Alberty is not worried and not interested in looking into a feeding tube for Lydia at this time. He was pleased with her height for weight on the chart, and he also said that we are not slaves to the chart in Lydia's case. The charts are created for typical healthy children, so the numbers don't necessary apply to our very special Lydia. He said that the charts are there to alarm doctors that something is wrong if they don't continue growing on the bell curve...in Lydia's case, we already know something is "not right." So, we will compare her to herself and not to the rest of the healthy population. He was happy with the amount of subcutaneous tissue that she has. That means that her brain is definitely not being malnourished...when we eat, there is a definite order of organs that receive the calories...stomach, liver, brain, etc. and then the muscles and tissues...so, if her tissue looks good, we can assume that her brain is getting the nutrition that it needs. Also, since we already know that her brain growth is below normal, this may have something to do with her overall weight, since your head's weight is a certain percentage of your weight. And he says that since her height for weight looks good...even though her weight is off the chart....we don't want to feed her any more than we are doing now...that would cause her to gain too much weight for her height, and that wouldn't be good for her either. We will keep close ties with him and see him at least every three months to keep tabs on her growth. He said that we are not at all saying that she will never need a G tube...nor that she definitely will at some point...we are just saying that right now, she doesn't need it. I felt so satisfied with these responses...I was hoping to not have the decision left up entirely to me, and he never even really asked if I wanted it...he was sure that she was doing well without it...that, of course, makes me happy!

PT yesterday
Sue-Sue gave Lydia an A+ at her therapy yesterday! She did GREAT! She held up her head for several seconds without tiring...enjoying looking at herself in the mirror. She also did some good work with assisted rolling. And the biggest improvement was that she tolerated the work for a long time without fussing...or shutting down. She was a sweetheart! We will continue to work at home with our homework to keep up her good work....hopefully her cold won't slow her down too much.

Another request for massage....I stayed up watching Randy Pausch with Dianne Sawyer the other night (if you want to be inspired, you have got to watch his "last lecture"...find it online...he has also written a book...he is dying of pancreatic cancer and is sharing his wisdom about life with the world...he is amazing!) Anyway, it was so late that I was going to skip Lydia's massage...she said, "I don't think so mama." As soon as I got all of her clothes off to change her into pajamas, she started cooing at me with those sparkling little eyes...I knew just what she was thinking. I asked, "Do you want a massage?" She let out the loudest, cutest little cackle that she, of course, got her way! She was not going to let me skip her favorite part of the day....and one of my favorites too!