Wednesday, April 14, 2010


(Charlie 9 1/2 months and daddy, Jericho beach)

Matt said to me the other day, "Hey Cher, you know that amazing feeling you get when you're first falling in love with someone and they 'accidentally' stroke your hand or graze your knee? I get that every time Charlie caresses my arm." Awwww. Because it's so difficult for Charlie to move her arms or grasp anything, it just means so much more when she does it. It is awesome to watch her really concentrate and really try hard to bring her toy up to her mouth or pull the string on her balloon, so she can beam with pride when she sees it bounce up and down. Such a lovely, lovely girl she is.

Charlie's grandpa, Matt's dad Mike, and his wife Jenny are here from the's their first time meeting Charlie, and it's been many years since Matt has seen him as well. This situation has brought Matt and his dad closer together and it's really beautiful to see, and it's also really cool introducing Charlie to her grandpa for her first time and to see where she gets some of her good looks from...but of course, they're still mostly from me. I am looking forward to spending time with them and seeing Charlie bond with her gramps over the next week.

Yesterday our nurse Anita came to watch Charlie for a couple of hours, she comes every Tuesday and Friday now from 10-2 to form a relationship with Charlie. It gives me the opportunity to go to the gym, nap, or grocery shop. While she was here I decided it was probably time to go through the boxes of supplies that Fed Ex has brought us over the past couple of months but i had refused to investigate at the time. But now that Matt and I are taking the "one step ahead of SMA" approach, I've decided to take the blindfold off and pay attention. Anita explained what everything was and showed me how to use the foreign objects. One was a pump that I put on the side of the crib (if she actually slept in one) and it will slowly administer her formula into her g-tube throughout the night, with the general idea being less wake ups/more sleep for everyone. Anita also showed me how to feed Charlie through her gtube...we flushed water through it...I'm not gonna lie, I almost puked. Not so much because I thought it looked sickening, but more because I couldn't stop thinking about how it must feel on the inside for Charlie. Whoa...i just got shivers thinking about it. I asked Matt last night if he wanted me to show him how to flush it, but he's not quite ready yet, that and I think he wants a medical professional here until we get used to it. It'll take a little time to learn to trust ourselves and have faith in our ability to take care of Charlie medically, but it'll happen.

I noticed yesterday that Charlie grins from ear to ear when I sing the alphabet to her. It is so far the only thing I can do to steal her attention away from Sesame Street, and it makes me feel pretty damn spectacular for single handedly holding that key to her's the little things.

1 comment:

  1. Funny, Lucy absolutely loves the alphabet as well! It's one of the only songs I sing that will grab her full attention :)