Thanks from the pirate

When Spice realized that so many of our friends and family were caring for her and routing for her, (I read her fb/emails,) she wanted to send you a message to say thank you.

She says she is feeling fine, just kinda hyper and her eye hurts. She says the medicines are really nasty and taste horrible. And she thinks her face will be working again soon.

Bell’s palsy joys: So today I have been navigating the difficulty of a kid whose eye won’t close. She either has to have eye drops constantly, because she isn’t blinking, or have a gel in her eye. But the gel means she can’t see properly, and so she needs it taped shut. I made her an eye patch to go overtop of her taped shut gelled eye. But then she needs pills every couple of hours. I also had to sit in her classroom this morning, because she was so worried what her classmates would say about the eye patch. They were curious and fine, of course. but she was still really nervous. We took it off for lunch, and I came back after lunch and put it on again. I can do this for a day or tow, but what after that? Plus, the gel doesn’t last all day. So it has to be untapped, regeled and retaped. Her poor skin around her eye is already sore. Ug. Poor little one. I haven’t figured out how to do this yet.

We go see the paediatrician tomorrow morning about the Lyme disease. That is of course, the scarier stuff. I haven’t even bothered making an appointment for myself yet.

Honestly, I’m having a hard time not breaking into tears every time I talk about it, because I’m so worried about her… I know mostly Bell’s palsy goes away, but I really don’t want her beautiful face changed. It would be horrible to live with something that people would judge you by for the rest of your life. I mean, being a black transracial twin adoptee is enough attention.

My goodness, it’s been a week. Huge changes at Vulnerable Children (although that’s been in the making for a long time,) massive decisions to make about our adoption, massive decisions about our business … Huge health changes and challenges for me.

But all I can honestly really think about is my little Toters. (My nickname for Spice.)

13 thoughts on “Thanks from the pirate

  1. So sorry all this is happening. Remember it is important to take care of yourself, too! I am a teacher of the Visually Impaired. Many children I work with need to have an eye patched. Ask your doctor about his thoughts on using milk of magnesia on the irritated skin from patch adhesive. Hugs to all 4!

  2. Just wanted to let you know that we are thinking about you and Spice in NYC…prayers for a speedy recovery!!!! And please do get both of you checked for Lyme ASAP as it can cause some very yucky long-term issues when not treated.

  3. Poor Spice! She sounds like a trooper with it all though.

    With regards to the patch, you may want to ask your doctor about different tape as well. I work in health care and there is special tape to use with babies (when taping tubes in place etc) that doesn’t hurt their skin – I’d imagine that around the eyes would be similar. There are also eye patches out there like this: http://funeyepatchkitsforkids.com/ This site is from the US, but I have seen kids using these in Canada so there might be something closer to home as well.

  4. I wanted you all to know that we are thinking about you guys constantly and are sending our prayers your way. What a winter this has been for everyone. I’m always here if you need to talk.

  5. I grew up with an eye patch for a while.. this brings back memories. Keep truckin’ forward… and keep us updated on the Lyme treatment.. Spice will be back to her spunky self in no time, I’m sure!

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