Tough few weeks

6 weeks later...

I've been avoiding writing. Even thought I wanted to put down my feelings in words, it's really hard.

Daniel started preschool a couple of weeks ago, and the emotions I went through were wide and varied.

Sending one of your twins off to a typical school while your other twin is in daily therapy instead is incredibly difficult.

For the first time I had to tell people I don't know that Daniel's twin sister isn't with him because she is "somewhere else". I told the parents of the children in Daniel's class who attended the parents' evening where Emmy goes, and why. Instantly I worried that Daniel would be treated differently. 

Some people handle the information really well, they don't even allow a flinch of sympathy to cross their face. I hate sympathy. I know it's ridiculous and it's just a way for someone to share an experience with you, and let you know that they are thinking of you. But when people feel sorry for Emma or anyone in my family because of Emma... well, it makes me sad. It's weird, really. I like to be a good friend to people when they are going through tough times, but I do that by trying to be sympathetic. I wish I had the answers!

I've been working full time for nearly two months now, which is remarkably therapeutic. I have to think about other things. It would have been really easy to dwell on Daniel and Emma being separated for school if I didn't have work to go to. I'm incredibly grateful to my parents for helping me out and allowing me the opportunity to go back to work knowing there are people at home caring for and, most importantly, loving my babies.

The geneticists have decided they don't want to pursue whole exome sequencing, which I'm disappointed about, but Adam is very comfortable with. He thinks it's not worth finding out all the "extras", especially when it doesn't necessarily offer us any answers. I just want to know what's going on with my baby, and how I can get the best help for her. We both want to do the best thing for Emmy.

The 25 week mark is here with this pregnancy, and we are at about the same stage as we were with the twin pregnancy when we found out that Emma's placenta wasn't very well attached, and she looked quite small. Needless to say I've been stressing out about that also. All the "what-ifs" are rearing their ugly head.

So I'm all over the place with emotions! Thankfully I have an excellent therapist myself. We recently switched insurance policies, and I had to move away from the most wonderful primary care physician in the world. So if anyone wants a referral to literally the world's best PCP (in the Dean network) let me know! I'm not joking, I cried in her office when I had to leave her!

Emmy, on the other hand, is wonderful. She is happier than ever, which is lovely to see. She is still non verbal, and her therapists have asked us to get a referral to a speech therapist to help all of us come up with ways to communicate with Em. The behavioral therapists have tried verbal communication, sign language, and pictures (pointing, etc) to no avail. Every now and then Emma will bring a toy to me (normally her therapy ball, or her bilibo chair), look at me, and tug at my arm. It's definitely communicative. She wants me to put her in her chair, or roll her on the ball. It gives all of us so much hope. One day I hope to look back on this blog with a laugh, and say "can you imagine we were every worried she wouldn't talk", as she enters her second hour of telephone conversation with a friend. Wouldn't that be awesome?

Her tremors and stares still happen, but nothing like they were when she was on the medication. I'm so glad we took her off it so quickly! 

We have an appointment with a new developmental pediatrician next week, so I will make sure to keep you all in the loop.

Keep thinking of my Emmy, she still needs all your good thoughts. She's lovely.

Lots of love,

Katy