Next step

Side pony and a bagel, classic Poodle. 

When I miss a call from the craniofacial surgeon's schedule coordinator, I don't have to listen to the entire voicemail. As soon as she says her first name, I delete the message. I know who she is, I will not forget to call her back, I have memorized her extension. But it's not like I delete the message because I prefer to keep a tidy inbox. (I definitely do not care about that, I keep ignoring my 1,000 unread emails because it amusingly annoys my husband.) I have to remove the dang thing off my phone immediately because surgery is scary and for one moment more, I need to put it in the freezer and it needs to not be happening. 

But it is happening, probably late summer 2015. Her palate still looks good, but she needs additional work on her right cleft. The bone in her orbital rim is not doing its job, so her eye still droops (ADORABLY), and there is a lot of built up tissue in her cheek that needs to be removed. Her surgeon told us all of this at her post-op checkup, and, per usual, it all made sense at the clinic and as soon as we crossed the threshold into our home it promptly made very little sense. So I'm requesting another appointment with the surgeon. Like, last time they took skull bone and put it into her orbital rim. Are they harvesting bone again? From where? And what's the deal with all that bulky tissue? Why is it there, would it just continue to get more extreme and will it cause her difficulty in some way? Because if not, do we really want to be doing surgery on it?  I worry that we already might be creeping up from surgery she needs and into surgery she "needs."

The other big thing he's going to do is explore her left eye in detail while she's under the anesthesia for the main procedure. Her left eyelid doesn't close all the way, which means she can't fully blink. I used to think, big whoop, but, now she's always acting foolish inside, outside, everywhere. She's normal toddler-clumsy and she's also blind-in-one-eye clumsy. If she got a spec of dirt in her eye, she couldn't flush it out by blinking. I'm not even sure if her tear ducts work properly in that eye. Her surgeon wants to take a look during this procedure, know exactly what he's dealing with, and then attack it at a later date. 

In other news, we switched to private speech therapy. She goes twice a week. Shierry still only wants to say "m"s. She can say "b" and "n" sounds, but it's difficult, and her cheek and lip muscles are apparently real lazy, because she almost always reverts to "m". So, Baba is still Mama, and no is mo. Her therapist thinks that because of the clefts and surgeries, Shierry's systems are out of whack. Her development in her gross motor was pretty separate from her fine motor, was separate from her eating, was separate from her speaking, was separate from her vision, was separate from her hearing.

These are the tedious details for those who are curious. Her gross motor was and continues to be somewhat delayed (girl is not super great at motor planning, she barely climbs anything, etc), because of her partial blindness and the fact that she was always having/recovering from surgeries at major milestone points, while her fine motor has always been quite good. She could eat reasonably well, but she learned to eat when she had a huge cleft-sized crater in her mouth. So, her facial muscles for chewing are weak or numb, largely due to the fact that they've only recently been cobbled together. Also, she has always chewed food way in the back and to the side of her mouth and she grew accustomed to that level of sensory input. So now she doesn't like to chew difficult things (meats) and she prefers to chew things that relay a lot of input to her system (cheerios). The speaking, enough has been written about that. Her vision, duh, blind in one eye. As for her hearing, the clefts have resulted in extensive fluid buildup that even when not rising to ear infection level, which it chronically does, can still negatively impact her hearing. 

Which is all a rambly way to say, her therapist is working on getting her systems to work together, in addition to typical speech therapy stuff. It's a process and she made it clear that we can't predict the future or create clear rubrics for success. As long as Shierry consistently communicates more and is happier for it, I'm good for now. 

We have also started to get Very. Concerned. about her teeth. The teeth have to be healthy so that they're ready for orthodontia so that her mouth is ready for future surgeries. Definitely to close up the bone gaps in her upper jaw and possibly for a bit of jaw distraction. Not, like, tomorrow, but eventually. We've always brushed her teeth, but now we have to floss them. I barely even floss my own teeth. And my teeth are sickly. Will I never learn?!?! The other thing with her teeth is that they're nuts, twisted every which way, erupting directly behind each other. They're goofs. But healthy for now which is all I care about. 

Speech is Relative

Poodles in inappropriate places. 

How many words is a 16-month old supposed to be able to say? I don't know. I see those questions on the developmental questionnaires, and I never finish reading them; the answer is always "No." The proposed range is different, depending on the doctor, but, still. No. She was born with lips that couldn't close, and until a month ago, she had a direct line from her tongue to her nose, soooo, No. 

What does Shierry say? Her first word was "Eh-Eh" for her sister/dog, Eleanor. For a long time, that was it. And even that disappeared for a few months. She then would say "Mama." Both Dan and I were and continue to be Mama. No matter what we do, we're both Mama. She hears a difference between the soft "m" in "Mama" and the sharp "b" in "Baba", but girl cannot get that B out. So, now I'm "Mama" and Dan is more like "Mah...Mah." She has also somehow picked up "Elmo," even though she's only seen him, like, once. She pronounces it "Eh...muh." In conclusion, that is 3-4 words, but really only 2ish sounds. Everything is "eh" and "ma/muh." Not nothing, but not a lot. 

The main thing worrying me now is the lack of progress. She understands everything: directions, questions, jokes(? I think?). But she doesn't seem super interested in using her mouth as a means of communication with humans, other than through laughter and song. She uses her signs for that. And she is a great signer! She learns new signs quickly and has made up several of her own. When she throws her arm straight up like she wants to ask the teacher a question, that means "take me outside RIGHT NOW" or "I am currently outside" (as applicable).

She doesn't use her voice-words to communicate in a functional way. She doesn't call "Mama" or "Mah...Mah" when she wants our attention. She cries. She only says our names when she's happy and calm and she just points to us and says them to, I don't know, show off that she can. It doesn't seem to serve any other purpose. Which, I'll take it, but still, I want to hear her voice and I want her to tell me what she wants. 

We still see an ECI speech pathologist once a week, but it's not working. Our original, beloved, therapist had to leave for personal reasons before the palate repair. The new therapist is very nice! But, ECI's mission is basically to help the parents help the child. And we are limited in our ability to help. It's difficult to articulate without sounding like a spoiled, lazy parent. But, here it goes. After coming home from work, between shopping, cooking, feeding, laundry, and dog, we are supposed to work with Poodle on her speech. We have the letter boxes. We are supposed to go over every object in those boxes and using a mix of our voices, gestures, and prompting, get her to say the appropriate sound. We are supposed to use the same technique when putting together a puzzle. Or stacking things. Or reading a book. Or eating. Or doing anything. Prompt, wait for response, and only then do activity. 

Shierry, do you want to read a book? A, b-b-b-book? You say it. YOU SAY IT. Shierry, you try, then we'll read the b-b-b-b-book. <<<a sound is made by Shierry>>> Good try, baby! Now, what is this book about? A horse? A h-h-h-horse. You say it...ETC FOREVER ALL NIGHT UNTIL ZZZzzzzzzz...

I can't do it as much as I'm supposed to. I'm tired. I'm bored. I'm not good at it. I want to just play with her. She doesn't even ever say the sounds, so there's no feedback from her. She gets upset because she doesn't understand why she can't just read an effing book. It's not organic. It's not fun. 

We are not born teachers. I know that because both of my parents are wonderful teachers and I've seen them in action and I...do research for the government for a living. Dan works on the Internet. We are parents to a special needs child and we try, but maybe not enough. Maybe not enough, but we do encourage her and talk to her nonstop and a few of the therapist's techniques are part of our daily m.o. at this point. She needs more than that. She needs a therapist who focuses on teaching her. We just aren't equipped to be her speech teachers. So, off to private therapy options we go!

POST-OP

Just doing some light reading. 

The surgery appears to have been quite the success. Nothing comes out of her nose anymore, except snot. No milk. No scrambled eggs. It's weird. She's back on solid, but soft, foods. She is WALKING. Which she began to do the night before her surgery, and which now she prefers to do at all times. We have practically given up on the high chair. She's back in day care and we're hoping they can help whip her back into shape. Not literally.

As I mentioned on facebook at the time, her surgeon is hopeful that she won't need another palate surgery for awhile. She also got a new set of ear tubes. I hadn't really mentioned much about this anywhere because it was getting gross and stressful, but in the months leading up to her surgery, the right ear tube was failing. Nonstop ear infections. Disgusting, pussy discharge. I'm pretty sure she could barely hear out of that ear. We got all the gunk suctioned out by the ENT two or three times. Shierry was on antibiotic drops for as long as the pediatrician could stand it, but the doctor was worried about instigating a fungal rebellion in there. Do not google ear fungus. I did...I did...Oh god...I did. Anyhoo, tubes replaced, everything working so far.

Shierry is at this weird age where she sort of understands what is going on, DEFINITELY has opinions about everything, and has limited capacity for reason. So, she knew everyone around her was causing her pain and discomfort, she did NOT like it, we had no way to properly convey to her that it was temporary and ultimately good for her. She was just a little baby during the other recoveries. She zonked out on pain meds for a couple days and then went back to normal. Not this time.

In the post-op recovery room, she didn't want to wake up. She just stayed perfectly still and moaned with her eyes closed. When we got to her room in the Intermediary Care Unit (hooked up to monitors, stat checks every two hours), she woke up. Thrashing around her crib-cage-bed in rage and pain. She pulled off her little monitor electrode things and almost pulled out her IV. She didn't want to be touched. I was shaken and horrified. She basically refused to take breaths. We pushed the morphine pump button as often as we could, but nothing was improving. The nurse told us that they needed to put her on oxygen and that we should leave the room while they did it. So we walked down the hall and huddled in a corner and cried. We could hear her screams. I had visions of them having to put restraints on her to keep her from hurting herself.

When we got back to the room, she was a bit calmer but still didn't want affection and refused to drink anything. The nurses doubled her morphine dosage and we were still pushing the button for more every 15 minutes. We finally all went to sleep. I mean sort of. We were all up every hour or so, every time the CA or nurse came in. Or when any of the many, many monitors sounded. 

The next day, she woke up and took some apple juice. We thought, hallelujah, there's our girl, hopefully we can get out of here in a few hours. But that bit of apple juice was it. She wouldn't drink anything else for the rest of the day. She was so miserable, a therapy dog came in to visit her and Shierry, who, in normal life, thinks that she herself is a dog, started screaming after about 30 seconds of poor Floyd. We were in for another night, but at least we got to go to the main floor. Where it turns out, you're allowed to refuse the over night stat checks. WHAT. How did I never know about that before.

We are at Dell so often that the nurses have started to remember her, and we have begun to have the same nurses across multiple visits. Her main floor nurse, bless her heart, is awesome in some ways. She figured out a way to let us feed Shierry from a spoon even though we'd been told that was verboten. She could not give two shits about when stat checks happen. But she is also sort of hilariously lazy. Her casual attitude extends to things like...misplacing eye ointment, which requires a two-hour pharmacy delay, and not sending us home with our Hycet prescription. But, whatever, I'll add that to my list of duties for next time. Bring blankets and pillows from home. Hound M for medication whereabouts.

The next morning we woke up, and things still seemed dire. Shierry was in a decent mood but still refused all sustenance. They would not let us go home until she took in an ounce an hour. She could only have liquids, and she wanted real food. We were despairing a bit. My visions this time involved gtubes. I didn't see how it was ever going to get better. And then, miraculously, her grandparents got her to drink most of a smoothie. Somehow this was enough to convince the PA to let us go home. I admit, when the PA asked me if I thought we could make it at home, I sort of lied. I had very, very little confidence that we would be able to get her to drink even the paltry required minimum amount. But I knew that we all needed to get the hell out of the hospital to even have a shot. 

She didn't drink anything that night at home. And she barely drank anything for the next few days. I called the surgeon's office in an absolute panic. If something didn't change, we'd probably be back in the hospital the next day because of dehydration. The nurse asked me if I had tried this or that or this or that. And I sobbed into the phone, yesssssssss, and it issssssssn't woooooooooorking. She, thank god, did not react to my histrionics or tell me to calm down. She instead suggested we up the painkiller dose a bit and make sure to give it to her every four hours on the dot. Dan and I had thought she wasn't in much pain, she seemed to be OK until she would sign "eat" and we presented her with a lousy cup instead of cheese. Well, wouldn't you know, the nurse was right. It worked. She started to show interest in those baby, or old people, depending on the marketing campaign, protein shakes, and she lived off those for the next week and a half. 

I was elated that she was herself again. But pretty devastated that we misread her cues so badly. We could have been giving her those pain meds more regularly. We thought she was just pissed off; we didn't think she was in that much pain. Plus, we had some sort of weird fear of giving her that much Hycet. We'd never had to before, and I guess we thought...she'd become a baby opiate addict? I don't know. Oh well. She forgave us/didn't really understand the exact details of what was happening.

On to the next one. 

What you fear

Early morning tea party!

I sometimes think that the impression this blog creates is that Shierry is improving all the time and is just like a normal kid. Or that these dodge balls come at us and we swat them down and say "No, not today, friend" with strength and grace. That's not exactly correct.

I don't know what normal means, but she is not it. Well, that's not exactly correct either. She laughs and plays and almost walks like a normal, healthy toddler. But, a lot of what she experiences, how people react to her, what is at stake every day of her life is not normal. I guess what it is, is that most kids have significant room for error. She and her special friends do not. Every kid gets teased. What kids  ALREADY say to her cannot even be classified as teasing.

So. OK. If my crazy formed concentric circles, organized by number of causes and intensity, the outtermost layer would be Stress. The weather, talking on the phone, food, excessive dog hair accumulation. They pop up on the regular, but aren't all that serious. Then there would be Worry. Work-life balance, mortality, Ukraine. These things might make me cry and cause me to lose focus, but they're temporary. 

The innermost circle would be Fear. What I'm confronted with every day, what I dream about. What lays the foundation for the wall that is periodically erected between me and other parents. I am afraid of two things: Shierry not getting the healthcare she needs and other kids.

I spend a significant amount of my week, when I should be actually working at my actual job, on the phone making appointments. When an office doesn't promptly call back, when appointments can only be made so far into advance as to be impossible, or when an office person is bad at their job, my first thought is always defensive. I don't think, oh darn, that's inconvenient. I think, F*** you, trying to keep her from getting what she needs. While they are justifying their absurd policies or difficult behavior, my brain is jumping from the immediate problem to how it affects everything else down the line. A rescheduled appointment begets more rescheduled appointments. I have to think about what her checkups and surgeries and hearing/vision tests are going to look like three, six, nine months out. Nothing is in isolation. She needs all of it, consistently, in order to catch her up and keep her apace with her soon-to-be classmates, physically and socially. I can’t let a single appointment fall through the cracks; she needs a steady stream of monitoring and coaching.

I have some semblance of control over scheduling, but in reality, we, Shierry’s parents, and her doctors do not make the ultimate decisions for her health. My insurance company does. They pay the bills. We are middle class people with good insurance. Compared to other peoples’ insurance, not compared to ideal medical coverage. I have to carefully monitor every claim sent by a provider to the insurance company, every bill sent to us from a provider, every letter sent to us by the insurance company, to make sure that we’re being charged the correct amount and that things were appropriately covered. I am not a naturally organized person, so I had to work my way up to the tabbed and highlighted insurance policy and the accordion folder of bills organized by year and specialty. Every time we receive a piece of mail from the insurance company, my heart starts to race. I have to put it down. I am unable to open it right away. What if that piece of mail is telling me that we’re on our own for this surgery? Tens of thousands of dollars. Or even if they decide, that, actually Shierry doesn’t need that speech therapy or that ophthalmologist appointment. Hundreds of dollars each. It adds up fast. I don’t know what we’d do; limited money means limited care. My vigilance and luck have saved us so far. I can be the Platonic ideal of on top it, and luck, it can still evaporate. 

We have had pretty close to zero complications from anything a doctor has done to her. She undergoes lots of procedures. All of her doctors are knowledgeable and, I think, try their best. Not even a good doctor bats a thousand, people. Let alone a bad one. I trust and think positive leading up to a procedure, I don’t obsessively fret about it. But every time they take her away from me, when a nurse holds her and I don’t, when they put her under anesthesia, I change in an instant. I don’t know how to describe it, my metaphorical heart catches up with my actual brain I guess and sends out panic and sadness to all the other body parts. We carry her towards the surgical theater, stopping at the comically tiny stop sign. I hand her to a nurse, they wave and walk through a set of double doors. She goes away, and I know that she might not come back to me whole. This has happened to kids we know. A bad result is not inevitable, but it’s not simply theoretical either.

As for other kids, a lot of them are totally fine!!! But the stuff that comes out of some of their mouths…I swear. I plan to delete this blog entry at some point. Nothing in this will surprise Shierry, once she can read, but I don’t want her to feel like she was ever responsible for anything about how I feel. She never makes me sad, other people do. So anyway, Shierry is barely one year old and has been called “a scary baby” and “creepy.” One kid asked no one in particular, “what’s wrong with it?” and some kids act like she’s infectious. I don’t know, y’all. I know people say, oh kids, they just say what they think, they don’t mean harm. But I’ve also been around kids who ask “what hurt her” or “what happened?” and then proceed to play with her normally or go along with their business. Or who protect her from their frisky little brothers because they know her eye is sensitive. Or who hug her and keep bringing her apple turnovers. I don’t think kids are incapable of censoring themselves or being kind. You can be curious and not an asshole, is all I’m saying.

Where are we?!?!?! PALATE

Sitting on the floor of the ENT waiting room because we are attempting to hide the fact that she is eating. 

Short story: It's still completely insane!

Long story: She doesn't care that it's insane. She now eats table food. When something gets caught in her cleft, she taught herself to grab the water cup to wash it down. We don't have anymore meltdowns. Kids are shockingly adaptable.

She is off bottles completely. We knew she had to be off of them by her surgery date. The nipple would harm the surgeon's work. Can't have that. I searched the internet for advice. The internet was worthless. None of my friends have had to get a kid off bottles so early. Even the advice for cleft parents was just not right for us. She didn't take bottles when other babies seemed to take their bottles. My big plan then was just to ignore the problem and hope that everything worked out on its own. 

My dad, who takes care of S during the day, thought that we should have an actual plan. So we asked her case manager about what she has seen other parents do. She just asked us, "How OK are you with crying?" In her experience, you can try any number of transition measures, but that with those, ultimately the process would just be stressful and prolonged and largely unsuccessful. She suggested a cold turkey switch from bottle to cup. My dad is always game for anything, so we tried it. It worked. If anyone would like to know more about how we did this, there were a couple tweaks to her schedule, let me know. 

She uses this spoutless sippy cup. It's from a list of acceptable cups that her surgeon gave us. No straws, which she couldn't use anyway, and only very short spouts are allowed. We went hardcore because why not. 

Her first palate repair surgery is on September 9. I will try to explain what the hell they're going to be doing. Through her distraction, they pushed three disparate pieces of upper jaw into one recognizable gumline. She has no roof to her mouth, her only existing palate tissue is sort of an extended rim along her gums, all the way to the back, beyond where the molars are. 

HAHA OK

Her surgeon, who we fully recognize is making this up as he goes along, originally  told us that he probably wouldn't touch her palate until she was older, that they would insert an appliance in there in the meantime. But then he had an epiphany. He told us that her palate is very similar to the palates of kids with Pierre-Robin syndrome. Some of those kiddos have oversized tongues that push their palates open wide. So, he is going to do on S what he does with those kids. Which, I THINK, is to remove the palate tissue from the back of the jaw, push it into the middle of the roof of her mouth and join it with the palate tissue in the front of the jaw. Like, fold in the ends of her V-shaped palate to make a full, but short palate in the front. He drew us a picture. That I didn't understand at all.

He told us that this is just the first step. The palate will be short, there will still be way too much space between the end of the palate and the back of the throat. The second stage of this repair will be another surgery to elongate it. I don't even know about that.

D and I obviously do not understand every detail of her surgery, we have to and do trust her doctors. Her anatomy is unique. Few people have ever had two Tessier 4 clefts. And even those people don't always have an obliterated palate. Her surgeon has never worked on a kid like her. The surgeries he's done so far have been mostly his inventions. And to us, that's OK. He's a little gruff. He talks really fast. He uses terms he should know we don't even recognize, let alone comprehend. He always seems like he's rushing around. He often comes into the examination room with a posse. some members of which we've never seen before. But, he is one of the only doctors who pronounces her name correctly. He calls her "princess." When he examines her, he jumps right up onto the bed with her. He is brutally honest. I hope he never leaves Austin.