So this got us a ticket to cardiology, an -ology that we had somehow managed to avoid up until now. (We also got a ticket for a swallow study, but that was significantly less "exciting.")
A few weeks later was our first appointment, where she had an EKG and we were given a Holter monitor to take home with us, neither of which really helped our extreme fear of stickers on our skin. (She screamed and tried to escape before the EKG; when I took the Holter monitor stickers off of her the following day at home (OF COURSE MATT WAS OUT OF TOWN DURING THIS WHOLE THING) I was certain that if the neighbors weren't jonesing to call the police on my parenting before, now would surely be the time).
Holter monitor on.
Aftermath of monitor coming off. She had those marks for at least a week.
During this appointment she also tried to run away as we were being led to the room, and then she tried to spider herself in the doorway so I couldn't get her inside.
It required her to lay down, which is, right now, the one thing that she will avoid/refuse/fight/scream about at all costs. There was a lot of yelling ("Don't hold me down!! DON'T HOLD ME DOWNNNNNNNN!!!!!!!") but eventually she agreed to sort of "recline" on her side with her shirt pulled up as long as I lay down behind her.
During the ultrasound there was a movie playing on a screen on the opposite side of the room. The room was not all that large, but I know Bug couldn't see it very well. It didn't matter, though, because we had the tech in the room with us who clearly has seen the movie 408710238470987324 times (poor gal), so any time Bug had a question about what was happening, she received a very detailed plot synopsis from the woman, who never bothered to even look at the TV screen.
Cardiology appointments always make me take exaggerated deep breaths. It's like watching someone get dental work (why would you want to do that??) and feeling like you have four new cavities.
The ultrasound was pretty neat, though. Especially when they turn on the colors, and you can watch how the red and the blue is moved through everything.
The reward for the ultrasound was a pair of bunny ears and a "hamster with a tutu."
Also while Matt was out of town, Bug had one of her stomach episodes. We've been having these for a long time. There is always so much drama surrounding them, I don't know when to take them seriously.
But I took her to the Ped again about it, and she just, you know, nonchalantly suggested that we try Bug without dairy.
My kid is a living, breathing dairy product.
Every meal she eats has cheese, and if it doesn't, then let's please add some on there.
We* are also vegetarians. And she refuses to eat peanut butter or snack on nuts. (*I am a vegetarian. Matt loves meat. When I was working, those were always the nights the two of them would gleefully eat homemade chicken nuggets. But in general since I do the cooking, we do not eat meat.)
So please tell me then, WTF is she supposed to eat for protein besides beans?
I was mad. If we're going to make a huge dietary change, there needs to be a plan. This needs to be methodical.
So I called GI myself and got us an appointment, except first available was four months out.
I tried to get an expedited note from neurology to get us in sooner but that office moves so slow they probably wouldn't even have it together before the actual appointment time.
Somehow I called back on the right day and snagged a cancellation. Win!
We go and see GI. THEY DO NOT LISTEN TO ME. We were just a patient coming into GI presenting with abdominal pain. They tried to tell me she was constipated. She is not constipated. They tried to get me to do a KUB (abdominal x-ray). I declined. She is going to glow in the dark soon, and even then she would still not be constipated. They wanted to do an endoscopy. Whoa, hold on there. Could you just maybe LISTEN TO ME for five minutes?
They did not listen to me, and we left the appointment without any nutritional guidelines or any plans about the dairy.
I called later in the day and left a message on the nurse voicemail and tried not to cry. The nurse called me back. We had a lovely conversation. The conversation I wish I could have had with the doctor initially. She admitted that 85% of the kids who come in with abdominal pain are constipated, so they always go there first. She agreed with me after listening to me describe several things that it was highly unlikely that Bug was actually constipated. She told me she understood why I declined the KUB and deferred on scheduling an endoscopy. She told me she was going to send me some information about dairy-free diets, and gave me a contact in nutrition. I wanted to cry in happiness. (Although when I found out our insurance doesn't cover medical nutrition appointments, I wanted to
It's been a few weeks. Bug is still not gaining weight (in the last three weeks she grew a quarter of an inch and did not gain an ounce). This age is impossible. She knows what she wants (cheese) and what she doesn't want. She is NOT interested in trying new foods, or consuming a new food in any sort of nutritionally significant amount. She has eaten a lot of English muffins. I have spent at least a hundred dollars on protein powders to add to smoothies, and all it has resulted in is her refusal now to consume "any smoothie ever again." She won't eat peanut butter. She won't eat almond butter. She won't eat Sunbutter (sunflower seed butter). She still won't eat nuts. She won't eat avocado. She WILL drink chocolate almond milk, but, honestly, who wouldn't?
But she has not had hardly any stomach problems. Matt and I are trying not to feel like bad people for not really, you know, taking any action about this until a few weeks ago, having fed her dairy since she was a year old and not putting two and two together, but hey. Better late than never? PARENTS ARE PEOPLE, TOO.
(Also while Matt was out of town, I ran a race and won my age group. I am not even going to pretend this is a humble brag, this is just a BRAG since I've never won my age group before.)
Last week I finally realized that she will eat regular Clif bars. So she eats a lot of Clif bars. I figure it's better than an entire box of graham crackers.
Even though we are not vegan, I am searching out as many vegan recipes as I can, as there's no questioning their dairy-free contents. What I cannot get into, though, is the "flax egg." I also cannot get over how repulsive nutritional yeast smells.
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OH and in the middle of all of this we got the go-ahead to schedule her next eye surgery (end of May). And an appointment to measure the blood flow situation in her eyes.
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Yesterday we had eye measurements at 10:00, and then were scheduled for the blood flow photography at 11:00. We were done early with measurements since she was so cooperative (I almost fainted) and so we checked in for the next appointment by 10:25. By 11:10, we still had not heard boo from anyone. I went up to the desk (this is at the main eye center, and not the pediatric wing), and was all, hey WTF?
A few minutes later a guy walked out to talk to us and I got a little terse with him. He was explaining how they were very behind. "We've been sitting here since 10:25!" I said to him. "Why couldn't someone have told us how behind you were 45 minutes ago, and then we could have just rescheduled?"
"Well could you go somewhere and come back around 1:00?" he asked me. "No," I told him. "We cannot."
He says he's going to see if he can "expedite things." Bug thinks this is a phenomenal time to announce that she has to poop. I say please wait, as the guy is coming back soon (in theory) to tell us something.
He walks back over a few minutes later and then all of a sudden we are following him back into the room. Someone actually followed through on a promise to expedite? Or, perhaps more significantly, things CAN actually be expedited at a doctor's office?!? (I almost fainted a second time.)
Bug still has to poop.
We walk into the room and he hands her a styrofoam cup of "juice." We have previously discussed the "juice" but with her you always have a 20/80 chance of any pre-work meaning anything whatsoever. She agrees to take a sip of the juice. And then wants to stop. The guy tells us she has to consume it all at once or it's not going to work. He sort of feebly encourages her to keep going, and at this point I am convinced he does not have children or grandchildren and they are just something he's seen in a textbook somewhere.
But she still has to poop. I feel awful for her. When you have to poop, the last thing you want to do is put anything else in your mouth. I ask the guy if there's a waiting period after she drinks the dye, thinking that would be a good time for us to escape to the bathroom. The last thing I want to do is make him sit and wait for us after we made such a stinky about waiting…. you get the idea.
Somehow, she drinks most of the juice. I don't know how I'm still conscious as this would be the third time I could faint. I feel like I'm in a dream, as appointments NEVER go this well.
Her tinkle has been neon for two days.
She agrees to sit on my lap and she puts her chin in the chin rest and sits as still as she reasonably can. He thinks the dye might work quickly. We still have not escaped to poop.
It takes a few minutes but you can see on the larger screen the vessels in her iris become more and more clear. It's crazy. I explain to him that she has nystagmus after he asks her for the seventh time to try and sit still (it's her eyes that are wiggling, not her whole body). She sits there without complaint, and he gets all of his pictures and we sprint to the bathroom as fast as we can.
We reward ourselves with an afternoon at the mall. She picks out a butterfly ring and a magnifying glass at the toy store (FOR ONCE something that wasn't a baby) and we spend the next few hours searching for deals.
She always talks a big game about turkey sandwiches and never follows through, so we bring Matt a lot of warm, soggy, leftover turkey sandwiches.
Today was the swallow study. True to my pathetic disregard toward sensible scheduling and planning, respite came in the morning so I could get a quick five miles in. I was supposed to bring food along to the study, but as of 7:30 this morning, I had absolutely nothing prepared, and still had to buy peas.
I made it back home by 9:30 with a bag of frozen peas, said goodbye to respite, made the peas, made spaghetti, and shoved us all out the door. All of my appointment reminders stated "OT Main" as the location for the study, so I dutifully drove to OT Main. When we arrived at OT Main, we were informed that this was not actually where the study was going to take place. I have to admit, I previously thought it slightly odd that it would take place there, but figured there was some sort of floor of the building I had not been on that would have x-ray services. There is not.
We were told to go to the 3030 building by the hospital. Which is, of course, a few miles the opposite direction and not in the OT Main building. STAB. We are now very late. We park and walk into the 3030 building and it becomes very clear that this is also not where we are supposed to be. I have her on my back as it's the quickest way to get anywhere, and so we hustle over to the main hospital lobby to figure out exactly where we're supposed to be. The bag that has all of the food in it has of course fallen off my shoulder and is banging against my right leg with every step I take. Bang. Bang. Bang. Just shoot me now, please.
My least favorite guy is working the main desk (yes, we are here really quite a lot, and I have favorites). Using just the first finger on his right hand, he slowly pokes our last name into the computer, and tells us to go to third floor radiology. He hands me a visitor pass (why? Why the hell do I need one of those?) and we are halfway to the elevator before he can finish giving me directions.
We are now even later.
We get to the waiting room and check in. I am irritated and annoyed and embarrassed that we are so late due to other people's ineptness.
We are called back quickly into the room.
A swallow study is basically a live x-ray where they watch you eat things. When she was a baby they fed her barium and watched it go all the way into her tummy (and back up again); this one is just focused on the throat. She needs to swallow at least one liquid, and our goal is two solids.
I am unpacking all of our food and somehow she has climbed into the chair without complaint. One less battle to fight out of the 87 possible this morning.
In the chair with her iron lap pad, ready to go.
I get my iron x-ray vest on, and am told to stand right in front of her. She can see the screen that is showing her skull (so cool, and so weird). They have to add phosphorescent stuff to all the food so that it shows on x-ray, but this means all the food is now different. Yesterday's hassle-free experience with drinking weird things at the eye doctor means all of her charity toward me has been used up for the next six months. She REFUSES to drink the white liquid.
And still refuses.
We get it to her lips and she spits again.
Finally she drinks some. Praises all around! Except I don't want to praise her, because it should not have taken five attempts.
Next is spaghetti. She loves to choke on spaghetti, which is why we've brought it. They've mixed it with "vanilla pudding" so it shows up. She is mad about this. She wants "our" spaghetti. "This is our spaghetti!" I say. "NO, IT'S NOT OUR SPAGHETTI."
She does this thing that she does at home when there's a food she doesn't want to eat. She touches it with the very tip of her tongue and then with one face and one whiny noise announces without words, "SEE?! I have tasted it, and I don't like it, so shove it up your ass."
I am sweating profusely.
This is the behavior that I have a really really really hard time tolerating and sympathizing with.
And there's a live x-ray running so, you know, protect your cells and JUST EAT THE GODDAMN SPAGHETTI SO WE CAN BE FINISHED.
She takes like one more half-assed bite, then tries to spit it all out, while simultaneously yelling about how she still wants to "GET A TOY AT TARGET WHEN WE'RE DONE."
"Then eat the spaghetti!"
Next it's the granola bar. It also has to be dipped in "vanilla pudding." I decide it's frosting. Look!!! It has frosting on it, your favorite!!
She is no one's fool.
But she takes a bite! She takes TWO MOTHERFUCKING BITES!!!2375UE1@!@!@!@!~~~~!!
OMG we're done.
I have literally soaked the front of my shirt translucent.
She gets down from the chair and I am faking my enthusiasm for her "cooperation" because I am not enthusiastic about how stubborn she is. I know, I know, she's a kid and it's weird and it's different and it's scary and I should be empathetic about it but when you've had to drag your kid to 2389723049817243 appointments you get tired of battling with them about it in front of other people and you just want them to ROLL WITH IT FOR ONCE PLEASE THANK YOU.
OT says that from what she saw, the swallow looks good, which is what we were kind of thinking, since she had the barium as an infant due to her horrible reflux and nothing anatomical was awry at that point. And then she says, "Oh, the reflux babies can be extremely sensitive to eating/swallowing as they get older." And this makes sense to me, but why has no one mentioned this to us earlier? Like we have questioned her choking and her uncanny ability to find something wrong with every single thing she puts in her mouth and just knowing this would have made me feel less crazy about the whole thing. And also that she's a normal human being because apparently you have SO MANY nerves and whatevers going in your mouth and throat when you eat that we all have crazy amounts of associations and memories tied to what we eat. So the fact that she ate something once and something (borderline) negative happened and therefore she is, you know, "NEVER EATING THAT EVER AGAIN, MOM," is not surprising. (Kind of like how I cannot eat Reese's Pieces ever again after eating too many and throwing up at a movie theater in elementary/middle school, and refuse to eat my mom's taco salad after choking on a taco chip once in first grade during dinner). And put on top of that the fact that her significant visual impairment seems to have heightened all of her other senses and that she has both my and Matt's stubbornness combined together into a compact little 40 pounds means she wins, all the time.
I told the OT that the choking on water is what has our panties in a bunch because, you know, it's water, and she told me that water can be a tricky one as it spreads so quickly in your mouth and throat. Other liquids have more viscosity and don't move in the same way, and can be easier to swallow. Oh, okay then.
AND THEN (because when I have a medical professional in front of me they must bear the brunt of all of my pent up questions from the last time I spoke with a medical professional, whether that's four minutes or four days) I asked her, well, how do we get over this? We talked about battles and control (I know that kids know that they are in ultimate control of what goes in and out of their bodies and I do my best to pick around these battles) and she said I should not make a big deal about eating, as that can lead to (and she whispers these words) anorexia and bulimia. The fact that she eats food of any kind and is growing and meeting her milestones (I sort of laughed at that one, but this is not the time to debate) means we don't really have to do anything else at this point. I brought up my concern about the dairy-free situation and trying to get protein into her and my failure at adding things to smoothies and she suggested what I knew deep down was how I would have to go about doing it: one fleck of powder at a time. So maybe in a year we'll have worked our way up to the equivalent of one serving. EYE ROLL.
As we're walking out of radiology, Bug announces she has lost her butterfly ring (that we bought yesterday). OF COURSE she would lose the ring. I try to be a really patient, nice, good Mom and gently suggest we go back and see if we left it in the room while she rips her glasses off of her face and starts sobbing uncontrollably. We go back through the waiting room to the procedure room and knock on the door, interrupting the next patient's study. Of course the ring is not in the room. Of course it's not. Bug is now stomping her feet, DEMANDING that we "GO TO THE MALL RIGHT NOW AND GET A NEW ONE." I am seething at this behavior.
We somehow make it downstairs and I lead her to the gift shop hoping they have something similar. They do not. Now I'm SO over it, I cannot help but throwing out the good ol' "if you would have listened to me about playing with it, you would not have lost it."
We make it to the car and despite the fact that she went through with the swallow study and was *generally* cooperative and I did in fact previously promise a stop at Target, I do not want to take her to Target.
And then I find the ring in the food bag.
She sort of sniffs and takes it from me. I am half-convinced she thinks I hid it on purpose. Either way, we do not go to Target. I buy her off with dairy-free sorbet at the frozen yogurt place instead. I give the ring two more days before she loses it again.
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Tomorrow we have a rescheduled PT appointment since our Wednesday time overlapped with the eye doctor, immediately followed by our regular Friday OT, and then we have, like, TWO WHOLE DAYS without appointments. We have no Seder planned, but don't worry, we're taking her to her first Easter egg hunt on Saturday. I am possibly the most excited out of the three of us.
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