There are three main things going on right now: her ankle, her speech, and her eyes. Wait...ankle? Yes. Let's go back.

The fetal diagnosticians' best guess as to what caused the clefts was amniotic band syndrome. I say that like it's a known thing, but, as far as I can tell, it's still a fairly mysterious diagnosis. This is the definition, lifted from Texas Children's Fetal Center, who took AMAZING care of us during the couple of weeks spent awaiting a diagnosis, I can't even get into it without crying. Anyway:

“Amniotic band syndrome (ABS) is a rare congenital disorder that results when the amnion, part of the fluid-filled sac around the baby, is damaged. This produces bands, or fibers, that can wrap around or trap parts of the fetus, decreasing blood flow to those areas. Hands and fingers are the most common body parts to be affected by ABS, but it also may damage the face, legs or toes.”

According to one of our doctors, these bands are sticky, lethally sticky, sometimes cutting off limbs and appendages. With a cleft as severe as Shierry's left cleft, those effing bands probably latched onto her little fetal face like an evil octopus and stole bone and tissue from her. That's pretty much what he said. Except without most of those words. However, never in all of our many, many sonogram or MRI images did either doctor ever see any bands, and as I understood them, they usually do see them floating around in there. So, he couldn't say for sure that is was ABS, but all of our genetic screening came back clean, I was in good health, so ABS was his best guess. I never thought to ask at what point this attack may have occurred, but from googling, it doesn't seem like there's a definitive answer?

So, she's born, and she has that bonus cleft on the right side. She also has a little ring around her right ankle. My dad was the first one who noticed it. I initially thought it was just a little chub roll. Except, she wasn't a chubby baby. She was tiny, she had no rolls anywhere. So maybe ole Gramps was right. We knew ABS usually affected limbs and what not. Could the same monsters that grabbed her face also have pinched her ankle?

You can see the banding there on her ankle.

During our early craniofacial clinic visits, the nurse coordinator would often bring in a wide-range of random pediatric specialists. Both to help us, but also, I think, because Poodle was a bit of a curiosity. Like, seriously, who is this baby, why does she have all these clefts, and what is there even to do about it. One of these random dudes was a geneticist.

Now, internet, I am hear to tell you that every mother of a special needs child has at some point been blamed by someone for causing the problem. This is that time I was blamed. There's something in my chart about a certain medication I had taken and the geneticist asked me how long and when I had taken it, but I didn't recognize the name of the medication. I turned to Dan panicked, and froze, I didn't know how to answer him. Was that it? Had I carelessly taken some medication and caused all of this? But Dan was calm, and remembered that the only real medication I had taken the past couple of years was a muscle relaxant for the torn labrums in my hips and he asked the doctor if the drug on the chart was a muscle relaxant. Yes it was, and I had stopped taking it months before I even got pregnant, so that was out. Whew. He then asked if I regularly took prenatal vitamins. I thought about it, and the only days I didn't take them was when I was too busy puking to consume anything. So I answered, "mostly." This, this he was interested in. He said, "mostly? Why do people answer like that. It's either yes or no." I was a bit aghast by his response, and he continued that often clefts are caused by a lack of folic acid. Well, if that's the case, I thought, fuck this guy, because I ate so many fruits and vegetables when I was pregnant, a few days of missing a prenatal vitamin and I was still consuming, on the whole, like, A LOT of folic acid. So, at this point, I was mad,. He was rude and also wrong, Dan and I told him that the other doctors thought it could be ABS. He was basically like, that's cute. We showed him Shierry's right foot. He was like, uhhhhhhhhhhhhh, yep, could definitely be ABS, byeeeeee. He couldn't tell us anything about ABS that we didn't already know, so he left.

At this point, in our minds, this confirmed it. ABS caused both her clefts and the band around her right ankle. What did this mean for her foot and her development? Who knows. But we knew that a lot of kids loose feet and hands to ABS, so we started calling her right foot her little "miracle foot." We alerted her pediatrician. She told us that she didn't have much, if any, experience with this, but that we would keep an eye on it. As Poodle grew, her legs and feet seemed to be developing normally and in sync. She didn't seem to favor one side or the other. Until she started running.

She started walking a little late in the game. She can't see out of one eye and also she toddles with abandon so she ran into furniture and walls and the dog a lot. She also fell a lot, sometimes because she tripped over something, but also sometimes, she just toppled down for no apparent reason. Through the last few months, she continued to enjoy walking but not be great at it.

The clinic at which she does speech also does PT and OT. This week, her speech therapist told me that a couple of the physical therapists were concerned about the banding on her ankle and the effect it's having on her walking. Her gait is off. It's very wide and she almost limps a little bit. The PTs think that she's hesitant to put weight on her right foot, she's very sensitive to new floor surfaces (going from tile to carpet), and that the banding could also be contributing to her awful balance. Oh, and, in their experience, kids have to get the banding released surgically or risk it rupturing.

Shierry has surgery all the time, you'd think I wouldn't be freaked out over one more. But I was and am. I had just sort of gotten a hold on all the craniofacial and speech stuff. And now there's a whole new set of doctors and surgery and possibly therapy to deal with. And rupturing?! What does that even mean?!?! One of my friends told me about the physical medicine doctors in town and I also tracked down (it wasn't in any way difficult to do, everyone's at Dell) the local pediatric ortho team. I'm getting a plan together. I work for the legislature, it's session time aka unpredictable nutty time. I literally have no idea how this is all going to happen, but I guess it will. We have to keep that little miracle foot safe.

We are lucky that one of my sister's good friends is a PT and that she introduced us to her clinic, at which our girl receives such wonderful care. We are lucky that my friend knows everything and is always there to point me in the right direction. We are lucky our pediatrician respects us and always gets us what we need to get her into see the best doctors. We are lucky that she is such a funny, tough, outgoing goof. Shierry woke up this morning and exclaimed, "Oh wooooowwwww." Indeed.

This post is much too long already. Speech and eyeballs in next post.