Tuesday, October 15, 2013


I thought about skipping writing anything personal tonight. I'm just not in the best of moods. I'm tired and completely at a loss over how to do better when it comes to my daughter. I keep coming up with things I could've done differently. I feel like I'm not equipped to protect her.

That's a pretty crappy feeling.


Yesterday, while I had BD home for the holiday, we attacked our storage closet. We've lived here for a little over a year and unpacked about 90% of our belongings within the first 30 days, but that last 10%...well, it was behind a closed door, so we left it there.

It felt good to be productive. I still have some sorting and placing to do, but the bulk of the work is taken care of. I'm excited to have a place to put my stockpile. I've been taking on couponing again as a hobby lately. I probably need to get out more, but this is my version of fun. Plus, I love to save money. Double bonus.

Playette had an early dismissal day, so we went and picked her up and drove to the ENT. The doctor was really nice and spent a ton of time with us. It was a tight space with a lot of people in it. The four of us, the doctor, her PA, and a medical student from NYU. I asked lots of questions and she gave us lots of options.

We've always been very fortunate with Playette's health. She hasn't had even a small procedure done. She doesn't have many of the medical issues that are typically associated with Down syndrome. 

This is great, of course, but it does make things slightly difficult when it comes time to address what her challenges are. For example, with this speech delay of hers, a lot of people see improvement in that area once the child has had ear tubes inserted. But she's never needed them.

Next up, what about tonsils and adenoids? It's pretty common to have those removed. That could decrease congestion, amongst other things.
Again, not her issue. Nor is sleep apnea. Or reflux. Or a multitude of other things that are really common and have relatively straightforward courses of treatment in a lot of cases.

So what is it? Why has she not outgrown her aspiration?

The latest thought is that she may have a laryngeal cleft. When we spoke to the doctor about how this could be confirmed and then treated, we were told that it is a multi-step process and it may not even end up being what she needs.

At the end of the day, thickening liquid is not that bad. After four years, we're old pros. So we will just sit back and observe and if there's ever another, more pressing reason to have her go under anesthesia, then we can consider also taking a look at the anatomy of her throat at that time.

Fun stuff, right?

Imagine having this conversation while Dez is also in the closet-sized room screaming his head off because we (gasp!) won't let him repeatedly throw BD's phone in the trash.

Playette handled the appointment like a champ. She earned a sticker and was quite happy even though Ariel was not her first choice. Once I started singing "Under the Sea," she became instantly content. It's the least I could do.

And because on Saturday night, we couldn't find a picture between us of both of our kids standing side-by-side, I was happy to catch them doing so today. 

Happy mid-month to you:


ckbrylliant said...

Love that picture. Ease up on yourself Mama, she is an inspiration to us and so are you.

Becca said...

Sweet, sweet picture. I, too, feel so fortunate that Samantha has not had the health issues so many other kids with Ds are so prone to. Okay, well, other than the heart defect that she had open heart surgery for...LOL

Maya said...

I hear you. But I think you're great. Where IS that parenting handbook when we need it?