Musings of a Marfan Mom

July 4, 2011
by marfmom
4 Comments

Adapting

I want my children to experience everything good in the world. I want them to share the aspects of childhood that their father and I look back on fondly. While I know their respective diagnoses will limit their ability to participate in certain activities, I do not want them to feel limited.

As a child, I loved fireworks. As a teen, I loved fireworks. As an adult, I love fireworks. I love getting there early to stake out the perfect spot. I love laying out blankets and unpacking a picnic dinner. I love playing games and walking around and listening to music and waiting for dark. I love the booms and the flashes of lights. It’s an American tradition!

However, I realize that all the things I love about fireworks can be all the things that make it an impossible situation for the Menininho. I’d planned to skip them again this year, but thought I’d ask his occupational therapist about it just in case.

“So, fireworks are probably totally out for M, huh?” I asked. “I mean, he loves lights but the noise would probably be too much?”

She thought a moment. “Well, if you did a lot of heavy work with him ahead of time, and maybe watched them from an off-site location, somewhere you could leave quickly, I think he could do ok.”

And just like that, we were planning for fireworks.

One of the dads at M’s school recommended a street from which we could watch a fireworks show in the city. I envisioned a grassy knoll and came equipped with a blanket to stake our claim with and toys to pass the time. We arrived there at about quarter to 9…in the parking lot of a mall. No grass, no park. Whoops!

M was getting restless, so Mark took him for a walk and we ended up at a frozen yogurt restaurant. Treats in hand, we made our way to a back parking lot, shared by two other families. As luck would have it, there was a lone shopping cart for M to sit in, which meant we didn’t have to worry about him running away. The entire show lasted only about 8 minutes and wasn’t anything spectacular, except that it was spectacular because M made it through the entire thing and enjoyed it. Mark called it “a pint-sized show for our pint-sized family.” It was perfect.

While there are a few activities that will always be off-limits to the boys, I will never stop doing everything I can to make adaptations to give them those experiences.

June 28, 2011
by marfmom
3 Comments

Baby J’s Sleep Study

Baby J had his first sleep study on Sunday night. I was dreading it, because I was sure it would be difficult to get him to go to sleep with all of those wires on. In the end, it was worse than even M’s EEG from last summer.

We were given little information except to arrive promptly at 7 pm, not even a few minutes late without calling ahead. I parked the car at 6:59. Go me! Was the room ready when we arrived? No. Did they even start prepping J before 8:00 pm? No.

J was a trooper for sure! Even though he had napped for a MAX of 1 hour all day (broken into 3 segments, natch), he hardly cried as he got strapped up and glued together. That’s better than I did. The air conditioning had broken and the room was at least 80 degrees. Both baby and I were sweating, and he had to be swaddled. I was having trouble breathing and all I wanted was something to drink, but do you think there was a drinking fountain? No! Cups? No! One of the techs directed me to a vending machine, but it was broken. Thankfully he took pity on me and gave me one of the water bottles from the techs’ fridge.

As it turns out, the trouble wasn’t getting J to fall asleep. He was out in less than 10 minutes. Staying asleep was another matter though. Since he’s been sleeping in our walk-in closet for a few months I’d forgotten how much of a restless sleeper he is. Any creak and he would cry out. I laid down at 10:45 and he was up at 10:50. Then again at 1, 3:15, and 4:00 (for good). I was so tired I felt ill. Then I went through the stages of parental sleep deprivation. Don’t pretend you don’t know what I’m talking about. First is denial: No, this child is not awake again. I am hallucinating this. If I just lay here he’ll go back to sleep. Then comes bargaining: Please child, if you just go to sleep, I’ll do anything. You’re only 6 months old so I don’t know what you want as a bribe, but whatever it is, I’ll do it. Next is anger. Maybe you don’t say the words, but you’re thinking them. And just as acceptance hits, your child falls asleep (and is promptly woken up by a tech coming in to tell you you can go home).

Oh and did I mention the A/C came back on at 4 am, but the blanket they’d provided me with was basically gauze, so it was freezing? Truth.

I don’t know how J was this happy when they came to disconnect him, but here’s the proof!

We should have the results of the study in a week or so.