This week. So glad it is almost over. We went to the hospital for appointments three times this week, which was about two times too many in one week. A feeding evaluation, swallow study, and a half day neuromuscular clinic appointment. Tuesday was the feeding evaluation with a lovely speech therapist. I got there, parked, strolled over just five minutes late (not bad), and it all went smoothly. It was nice to watch her laugh and play during the evaluation.
Thursday was another story. It was The Swallow Study. Also known as, pretty much the worst thing ever. I got to the hospital at 1 pm for a 1 pm appointment - I awarded myself mental points for being on time and triumphing in the subterranean SUV war zone of the hospital parking lot.The intent behind the swallow study is good - to establish a baseline before the anticipated treatment begins - which will still likely begin in Chicago, but hopefully only for a couple months until we can transfer to our local hospital.
But back to the swallow study. It was very hot in the room where we checked in and I am a delicate girl and overheat easily. I started to sweat. Now Marian apparently has a delicate thermometer as well and her cheeks flushed and she started to cry. It was only downhill from here. Ok, no problem - she's hot and hungry - it is a swallow study, you have to eat to swallow. That's what we're here for. We took our seat with our lovely friend who is an OT at the hospital. We jiggled Marian and played with her, look at this, look at that, look at this again, look at that again, oh my goodness when are they coming to get us. She started screaming. She's supposed to be hungry for the study but there was no choice, we had to break out the crackers. We worked quickly. Ok, this is working, she's not crying anymore and is eating. Thank heaven for crackers.
Now here is where it all went wrong. Someone from The Swallow Study came out. A nice enough guy. Friendly. Professional. He introduced himself and said, "can I have what you brought for her to eat please" "Sure!" I said. And I gave him everything I brought. EVERYTHING. Two bottles of milk. Two pouches. String cheese. A banana. And the crackers. EVERYTHING. I did not even keep one single cracker. Now, I don't know how he is so fast - I myself am not known for speed - but he disappeared in the blink of an eye.I hadn't even finished retracting my arm from handing over our food when I realized my horrible error. But it was too late. He was gone, with our food. What remained was one hungry, hot, tired and angry toddler.
Now, I can't blame Marian. I can't blame the hospital. I can't blame the therapists who seemed knowledgeable, empathetic and worked as quickly as they could. I can't blame Paul - because he wasn't there. I can only blame myself. In Marian's world, she's being jiggled and jostled, shown the same toys again and again in a warm room at nap time on a near empty stomach. All she wants is some dang crackers, and just when she finally gets them - they're gone! Ok, it's ok, I told myself, sensing the potential looming disaster. We're going to get called right away. Not the case. Five minutes of crying. Ok, NOW we are going to get called any second. Think again. More screaming, body flailing, hands shoving at my face in anger - cracker betrayer!
We had to take action. Our friend ran into the room where our food went to get some to tie Marian over. She returned with a single cracker. We both eyed it like it was a piece of actual gold. Marian took a pause from her vocal protests and eyed it. We eyed it. She eyed us eyeing it. We eyed her eyeing us eyeing it. She swung her blue eyes back and forth between the single cracker and us. We good heartedly and a little fearfully broke it in half to try and make it last longer. Two bites instead of one. Marian reached out, she's going to take the cracker I thought with relief. She's going to eat it and feel better (note: I see now this wasn't very logical). She extended her precious little toddler arm towards my extended hand and then WHACK. She smacked it out of my hand. If she could have Xena Warrior Princess whooped NOOOO at the same time I am sure she would have. We watched in shocked silence as it scattered across the hospital ground. Half the cracker is ruined! It's ok, it's ok. We have another half.
Marian looked at us with a mix of betrayed Julius Cesar and angry teenage girl. The message was clear - how dare you try and calm me with one cracker. I just want to go home and go to sleep. Take me home now. I did want to just leave and take her home, but I also didn't want to come back and do it again. We've come this far and we still have half a cracker. I held it and thought,"this is it, our last chance." I'll try the exact same thing again and see what happens - genius. I reached out slowly, WHACK. Cracker on the floor again and Marian was trying to hurtle her body out of my grasp after it I can only imagine to totally obliterate it.
"We're ready for you now," they pleasantly called to us from a room across the hall. I was red, disheveled, sweaty and holding Marian while she was continuing to shove at my face. All I could think was, get her food asap. We walked into the next room and I placed her in the seat immediately thinking the study would begin any moment and she could eat. Her cries horribly turned from being angry to being scared. She was scared being strapped into that chair in a strange room with new people - not to mention she wasn't coming in from a soothing waiting period. I had to put on a radiation cape and neck brace. The vision of a comforting mother. She got red in the face, she started coughing, "WHERE IS THE FOOD?!" I was screaming in my own head at this point. We had to wait for everyone to get there before she could eat. I thought again of unstrapping her and running out of the room. I think it was a mutual survival instinct. It was horrible to watch helplessly as she was strapped in, reaching her arms out to me. And then I noticed, she's going to throw up. And then she did.
Right about now is when the last person made it to the room. The Swallow Study could begin! Thank goodness. I quickly gave her a bottle. She guzzled it for twenty seconds. Then they said, stop the bottle, let's try a puree, she took one bite. Then they said, let's try the banana - no - WHACK. The bottle again - no - WHACK. The cracker (you can't blame them, they didn't know) - obviously, WHACK. I was panicking, all this and it's not even going to be completed? Ok! They said cheerfully, we're done now! We have enough. And it was over. In less than two minutes. I grabbed Marian, she grabbed me, and we high tailed out of there. It was 2 pm. This was one hour of our day.
I don't think I'm going to buy those crackers again for a while.