June 4, 2012
by marfmom
6 Comments

Day 1 of our Mini (Doctor) Vacay

Now that we’re moved from California, we no longer have the luxury of having all of our Marfan specialists less than an hour from home. This requires a rather long drive a few states away to see a couple of our doctors. And, since they don’t see patients on the same day, it’s a three day trip.

Luckily for me, 1) Mark was able to take some vacation time to accompany us so we could make it a mini vacation, 2) we’ve got the opportunity to catch up with some friends.

Through blogging, I’ve come to know two really neat women who are also part of the “Marfamily.” One has Marfan and the other is married to a man with Marfan; both have an affected child as well. We’ve been chatting for about 2 years now and I was so excited at the chance to meet them and their families in person on Sunday!

Jaime’s daughter was so good with the Menininho! He loved playing with her!

I picked up some headphones for M to wear in crowded places and they worked pretty well! He wore them during some loud water play and to walk outside from the museum to the restaurant.

All the kids

Fab friends: Ang, me, and Jaime

June 1, 2012
by marfmom
0 comments

Friday Favorites

It’s Friday, so you know what that means!

Come on over and link up the favorite post that you wrote this week. I promise I’ll come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too. I’ll leave the linky up through Sunday night.

May 31, 2012
by marfmom
5 Comments

Worries

Tuesday night I found myself laying in bed staring at the ceiling and worrying. Mark and I decided to try putting the Menininho in a “mainstream” (read: non-special needs) preschool twice a week this summer. After a few tours, we settled on a Montessori program. This way M would get structure and have opportunities to interact with other kids and I’d have some time to take J to his appointments and maybe do a Mommy and Me class with him.

I’d been feeling confident about this decision until last night. Then, all of a sudden, my mind was flooded with what-ifs.

What if the day (8.5 hours) is too long for M? He’s only done 2.5 hours at school before.

What if the other kids don’t like him?

Montessori programs sure have a lot of rules. What if it’s too hard for him to follow them?

What if the teachers aren’t patient about M still being in diapers?

What if the teachers aren’t patient with his scripted speech?

What if he gets kicked out?

Eventually I was able to calm my brain enough to go to sleep. M seemed to have a good first day too: he was working on a task alone when I picked him up and was very focused on it. The other kids ran to gather around the stroller to comment on Baby J but M was pretty oblivious until I said it was time to go home. He didn’t want to leave, but he cleaned up his project without much complaint so that was great 🙂 I am hoping things will continue to go well and I can set my nerves aside.

How about you? Any of you have worries like these? Should I schedule a meeting with one of his teachers in a few weeks to get more information on how his behavior is in the classroom? We don’t appear to get notes home, or at least I didn’t yesterday.

Boy in a box