Musings of a Marfan Mom

May 9, 2013
by marfmom
2 Comments

Sleep Issues…Again!

I think it’s been at least 6 months of J having frequent night wakings. We’ve tried different tactics, thinking this was behavioral, but nothing has made a difference. In March, we went to see J’s pulmonologist for a check-up. I told her of J’s sleep issues, and she thought it might be his daily asthma medication. In 10% of patients it can cause nightmares.

Well, you can imagine what a terrible parent I felt like then! I wish I’d known to look for that side effect from the start. She instructed us to start giving the medication in the morning instead of at night (nighttime is recommended for asthma patients). We saw no improvement, though J had an asthma attack two days after changing the medication timing 🙁

We also, at the pulmonologist’s suggestion, scheduled an appointment with our sleep pulmonologist. I fully expected that the asthma med would be the culprit, but it wasn’t. Our sleep pulmonologist checked J’s feratin levels, which were on the low side of normal. Low feratin/iron levels can cause restless leg syndrome, so we treated him with iron supplements for a month. No change, and not only no change, but now that he’s in a toddler bed, J comes and lays outside of our door until we discover him (which doesn’t take long).

I’m leaning towards this being behavioral, but the sleep pulmonologist agrees that we need to rule out J’s sleep apnea being back. That means next week, he and I will head back to the hospital for sleep study #5. He hasn’t had one in over a year, so I hope he’s cooperative!

blond toddler

J at the sleep pulmonologist’s office

May 7, 2013
by marfmom
3 Comments

What a Week

This past week has been impossibly difficult. I’ve been trying to wrap my head around the fact that one of my best friends is no longer a phone call away. I miss her so much. Please keep her family and all of us who loved her in your thoughts, if you wouldn’t mind.

For those who did not see on Facebook, on Thursday I came home to find that someone had mailed us an iPad mini for Baby J. We have no idea who it is from. Whomever it is, I hope you know that we are appreciative beyond words, and if you want to come forward we’d love to thank you personally, but if not we respect that and just say thank you, thank you, thank you.

Here is a video of J using the LAMP: Words for Life app to communicate his pre-naptime desires.

We’re waiting on the case to come in, so J hasn’t been using the iPad on his own yet, but we have many practice sessions during the day. Yesterday morning he used it to tell me what he wanted for breakfast. He can tell me what articles of clothing he needs to get dressed, when he wants to watch TV, when it’s time for bed, that he has a dirty diaper, label body parts, and request to go to the “train station” (evidently that’s his name for his bed? Last night he said that, then ran to his room, jumped on his bed and made a train noise.). It’s really exciting!