Weekend Roundup

• I finally told one of my neighbor friends the truth about what is going on.  I didn’t candy coat it, and I hated the fact I broke down for a couple of minutes.  Of course, it was right when Boy Boy E walked up, and I didn’t see him.  She was so sweet, and she offered any help we need.  (She took care of Big Boy E and Little Girl A when I was admitted to deliver Hannah, and they spent the night there.)  
• Tot Shabbat on Friday night.  Since we are new to this temple, we introduced ourselves to the Rabbi.  I had emailed him a couple of weeks ago to see if he knew of anyone else with Gaucher’s Disease (since type 1 is predominantly Jewish), and he didn’t.  He asked quite a few questions on what we are dealing with.  It was all I could do not to break down, but I did it matter of factly.  My hubby says I painted too negative of a picture, but isn’t that what we are dealing with?
• Last night, hubby and I had a “date night.”  Our next-door-neighbor, who we just adore, came over to watch all three kids.  We left at 6 PM.  The plan was to go see a non-kid movie and then go out for a grown-up dinner.  We ended up seeing “He’s Not All That Into You.”  I loved the movie!  Total chick flick.  We called to check in after the movie (about 9:30 PM) only to find out that Little Girl A developed a slight fever and fell asleep at 6:30 PM (she seemed fine when we left!), and Hannah had been crying non-stop since we left.  She wouldn’t even take her 8 PM bottle.  Even though our neighbor felt bad to tell us (she wanted us to enjoy our night out since she was fine with everything), we decided to come home anyway.  The thought of having Hannah crying for over 3 hours and not take her bottled plus the fact that Little Girl A was sick, well, we wouldn’t have enjoyed dinner that much anyway once we knew!  But you know, even just a movie with the two of us was nice — I miss holding hands with him alone!
• Festival of Trees today at the temple.  It was a fun event, and I’m glad we went.  No talk of anything negative.  Just a simple seder service, some children’s activities, BBQ lunch, and Hannah was held most of the time so she could take it all in.  I posted some pics from today on facebook, so be sure to check them out.

This week is a HUGE week for us.  Hannah starts her Cerezyme treatment tomorrow morning at 10 AM CT time.  If you have twitter, I’ll twitter updates as I can, as I’m not bringing my laptop (even though there is Wi-Fi, I want to see how it goes first).   I’ll be sure to post an update sometime tomorrow night if you don’t.

We also meet with Dr. S., the Gaucher’s type 3 specialist, up in Dallas on Thursday.  Hopefully we will get a lot of answers and a lot of information.

I’m so nervous about tomorrow….