Sunday, October 24, 2010

Happy Birthday Gili!

I think our hearing went well today.  It was one doctor who spoke English one lady who didn’t, but wrote everything down after the doctor translated it.  Mostly they asked us some questions and confirmed the answers with the letter from Dr. Inbar.  Our appointment time was at and we walked out of the building at . 

Gili was pretty cranky in physical therapy today.  We confirmed that the water wings don’t do the job, and are just clumsy.  We also started a new technique Nili called “Vojta.”  Gili hates it, but I think it seems like a good thing for her.  And it takes a little less coordination on my part than some of the other exercises where I’m trying to balance her in ways she’s not keen on.

I’ve been corresponding with Tracy McGinnis and some other CMV moms through Facebook.  I enjoy knowing what might be in store, even if it’s not good.  I don’t like surprises.  (Even for my birthday, I say anticipation trumps surprise.)  I’m still pretty desperate for contact with other people who can relate.  Maybe when it’s more obvious that Gili is different I’ll start meeting other moms of special needs kids and we can talk.  But now, she’s just a cute little baby in a stroller, except that she’s one year now and still looks like a cute LITTLE baby in a stroller.  But I have no obvious common ground to start a conversation with strangers of special needs kids, let alone the language barrier.  Did I already mention that Gili’s third tooth is coming in on the bottom?  I admit to some paranoia here, but it also looks a little crooked to me.  Well, Tracy confirmed that CMV can lead to teeth problems.  But I still hope it’s paranoia.  It would nice to be wrong about something I’m making “too big a deal over.”  My husband actually found the tooth when I was only looking on the top.  I told him I think it’s is always two top, two bottom, two top, two bottom… He’s said, “Well that’s just Gili.”

Yesterday we celebrated Gili’s birthday by singing and taking her on some playground equipment at the park.  Later, her favorite 7-year-old came over to help sing and dance and the big kids had homemade ice pops and oranges.  Today we had her virtual birthday with relatives.  We decorated the area in back of where we sit at the computer and we chatted on Skype with some relatives.  There was definitely a celebratory atmosphere when everyone sang “Happy Birthday” together.  And Gili loves to Skype and listen on the telephone, so I think it was appropriate.

I'm slowly hinting to my kids that Gili’s different.  I mentioned to Big Sis that Gili was going to go to a school to learn how to crawl and I asked her if she went to school to learn how to crawl.  I saw a baby in the park who was starting to walk holding his mom's hands, and I said, “I bet he's Gili’s age.”  I overheard Big Sis and Big Bro playing school with their dolls and they had a separate school for "laying babies"…babies who don’t walk or crawl.  That gave my husband and I a chuckle.  I don’t know what my goal is when I’m bringing it up.  Maybe I just don’t want to feel alone.  Is there any benefit in them figuring it out now?  They know she goes to physical therapy, but Big Bro is going to have speech therapy, G-d willing, and Big Sis is going to have a few sessions with my therapist to work on some emotional issues.  Maybe I just think that for me it came as a slow realization, and that worked for me, so I think that would be a better way for them, too.  The last time I saw Professor Amir, I think more hit me than usual when he told us that Gili was one of his 5-6 real bad cases.  I starting thinking about Gili differently, and maybe even treating her a little differently.  It was the first time I really thought of her as special needs, and I didn’t like what it did to our relationship.  I think I’m over that now, but I’m sure I will have more moments like that in the future.

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