I don't talk a lot about Daphne physical issues, partly because I forget that some of the things she deals with aren't the norm. People might look at her and wonder about the kid with the weird leg issues, but I just look at her as the kid. No issues. Also partly because we don't like to make a big deal out of things. She's Daphne, we love her, she's fabulous, she's so funny, what else is there to know?
But this is going to be a busy fall for her, plus I've somehow gleaned some readers from far off lands who are probably wondering "what does that poor baby have on her legs?" So I suppose I should do a little update. This update will also help clarify why you'll be seeing a post or two from the hospital in the coming months.
Part One
Daph was born with talipes equinovarus. Do you like how I can throw out Latin like some sort of genius? Actually I don't even know if it is Latin, it just looks like something that would be Latin-ish. But you more common folk might know it as club foot. You can click here for a really clear and simple website that explains exactly what she has.
While club foot can appear for no apparent reason, her club foot is a side effect of her skeletal dysplasia. Daphne's type of skeletal dysplasia is unknown at this point, although the people who really are geniuses and who work at Cedars-Sinai Hospital are occasionally throwing out a gene test or two to test her for. All we know is it seems to affect the lower part of her legs (between foot and knee) and lower part of her arms (between hand and elbow) the most. I don't notice it so much in her arms (although people who don't see her everyday probably do), except that I have to roll long sleeves up for her. I think the shortness is way more apparent in her legs. So far in public we only get questions about why her legs are in braces, although I think people usually think she's younger than she is because she is kind of scrawny and of course, short.
But she's growing on a perfect curve that she's set for herself, and she's above and beyond doing everything a typical 9 month old would be doing. Go Daphne!
We need to get her feet fixed so that she can start walking soon. (What? Walking? Noooooo!) She's had one heel releasing surgery and she needs to have at least one more. Her doctor wants an MRI done so that he can see exactly what is going on with her feet, because x-rays have shown her ankles might be structured slightly differently than one would expect. We go to OHSU Tuesday for the MRI. Babies are notorious for being very wiggly, so Daphne will have to be put under for the test to be affective. Blech. Her doctor mentioned he might do her next feet surgeries one at a time instead of both at once like last time, but we'll know more after the MRI.
We have paperwork telling us how to prepare for the MRI, and I was so happy to read this (bold print my own):
We may not be able to do an MRI if you have any of the following:
Some/most cerebral aneurysm clips
Artificial heart valve
A metallic foreign body imbedded in your eye
Whew, I am so glad they cleared up the fact that she cannot have a metallic foreign body in her eye. Any other part of her body is fine for the metallic foreign body, just not the eye. Good to know.
OK, moving on to Part Two
Also as a side effect of her skeletal dysplasia, Daphne has a small cleft palate. Hers is a soft palate cleft, meaning it's at the back of her palate toward her throat and does not affect the bone. If you use your tongue and follow your palate starting at your teeth and go back toward your throat, you'll feel hard bone and then suddenly just soft skin. (Please don't gag yourself while trying this experiment.) The soft skin is where her cleft is. It's really caused no problems except for affecting her ability to suck. I wrote this post explaining this a little. I think sometimes with solid foods if something is too big or too thick she has a bit of difficulty, but Daphne is the first baby I have ever taught to eat, so I don't know what non-cleft eating is like. For all I know the gagging and Joe's O's shooting out her throat at my face is completely normal. I do fear bits of food going up her cleft and lodging into her brain to rot, but I've been assured this is not possible.
She is getting her cleft fixed on November 23rd. Don't judge us for taking pleasure from poor Daphne's pain, but we were so happy to get her surgery scheduled for that day. This is the Monday before Thanksgiving, so now David will get the holiday off for family leave. Yes! I don't like it when David works holidays.
She'll be up at OHSU again, and hopefully we'll only have to stay for one night. I say hopefully because last time Daph had surgery she had a weird reaction to the narcotics and we had to stay longer than we expected. We hope this doesn't happen again.
In Conclusion - finally
None of these surgeries are really that serious. Like if you compare them to a heart transplant, they're not that big of a deal. But they're still not what I would call fun. I'm concerned about her mouth surgery, because how will she eat while she's healing? It doesn't sound fun to have your palate skin flayed off and put back together again. (That's how the doctor described it. Flaying.)
Also Daphne has SERIOUS stranger danger issues right now. I mean, crying buckets of tears when other people hold her. I imagine walking her back to the OR where I have to hand her off to the anesthesiologist, and she's crying and crying while reaching for me. And then I have to leave. Can we say not cool.
Alrighty, are you totally bored with the longest blog post ever? I personally only stopped for two naps.
I hope you all feel a little caught up on Daphne's busy life. And now you know when you can send her gifts, because you always need gifts when you're under the weather. I hear she likes large bouquets of flowers.
7 comments:
Okay, I'll try this again.
I got a good chuckle out of 'A metallic foreign body imbedded in your eye.' With those blue eyes, they should be able to tell there is nothing in there of a metallic nature.
Daphne looks like she is exhausted from reading the blog. Maybe she will sleep all night.
Give her a kiss for me, when she wakes up.
Hehe. I think my posts are normally this long. Thanks for the updates! Praying all goes well.
I was I just going to say what Emily said - this is probably my typical length of post! Daphne is downright adorable, and I'll be praying that the surgeries go so much better than you can imagine, and that she has no reaction to the narcotics at all (except for the desired reaction, of course). :)
Not sure if I have ever commented before, but this post struck a cord with me. My second daughter had multiple (eight or so) surgeries, starting at 14 months old. Each time, I was allowed to put on a paper outfit and carry her into the OR. Most often I was allowed to stay and hold her, until she was asleep. She was usually premedicated, kind of like a drunk baby, funny to see, which reduced her anxiety. When I brought her in, I was allowed to sit in a chair, while they put her out with Nitrous Oxide, through a mask, then we would move her to the table, I would kiss her on the forehead and then leave. We were also called before she was totally awake in recovery, so that we were there when she woke up. Every hospital is different, but ask about the procedure that the hospital follows, before you get there, so that you know what to expect. Good luck, your daughter is beautiful.
Cindy
Thanks for the update! I started reading not long ago, so the medical jargon was helpful to know how I can pray for Daphne. But you're right, she's a gorgeous 9 month old and that's all that matters!
Reading the comments and think you should follow Cindy's advice regarding checking to see if you can go with Daphne into the OR. Dornbecker deals with alot of children, well, only children, so I think they would be open to it. But what do I know. I've been able to stay with Dad in pre-op when he is getting the 'drunk husband' personality, but no farther than the double doors to the ORs. But then, Dad didn't have separation issues. AGH let me stay with Rebecca for her tests when they normally don't. If Albany allows it on a case by case, Dornbecker should as well.
"I've been able to stay with Dad in pre-op when he is getting the 'drunk husband' personality"
Ummm What happens in pro-op.....
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