Yesterday was awful. KayTar knew where we were going from the moment she woke up. Mommy doesn't wake her unless we have Somewhere to Be. And sadly, the only place we have to be that early is the hospital. She was withdrawn all morning and once we got in the car and onto the freeway she started crying quietly and saying, "No docdahs. Don't want to MomMom. No docdahs." I told her we had to see the doctors today and that she would be okay. "You okay, KayTar. You okay." she repeated with tears in her throat. I almost flipped a u-turn on the freeway. It was just too sad. I let her pick some music (Maroon5 Wake Up Call, if you'd like to know what she's into these days) and tried to help her forget where we were going. It worked for a while. But one we exited the freeway she knew where we were and it started all over again. I felt every Mommy instinct in my body raise themselves in protection, but I had to keep driving. I made myself a promise, though, after yesterday, we are done for a while. No appointments. No doctors. No nurses. Unless someone gets sick, of course. She deserves a childhood that isn't so filled with poking and prodding. She deserves a vacation from it, if we can't quite manage a life that is free from it. I told myself that we would get it all done, and then be done. And so I kept driving.
The ABR went well actually. We had a different nurse, Martha, bless her soul. The first time KayTar wretched up the sedation meds, she said, "We have suppositories, do you think that would work?" "OH MY GOD YES! THAT IS THE ONLY WAY WE CAN GET MEDICINE INTO HER! WHY HAS NO ONE EVER TOLD ME ABOUT THESE BEFORE? I LOVE YOU MARTHA! MARRY ME! MARRY ME!!"
And so Martha got us three green sleep-inducing suppositories and they went right up the poop-chute while KayTar practiced counting them. She immediately curled up on my chest and was wholly content. It still took about an hour for her to fall into a deep enough sleep that I could lay her down, but it was a dream compared to the previous nightmares. Suppositories are my best friend! Martha is my hero! YAY FOR BOTTOM ROCKETS!
It went well. KayTar's left ear is largely unchanged, although she had a slight worsening in one of the frequencies and a slight improvement in the opposite frequency, neither is a large enough change to make a difference. They ran the test that helps predict if an ear is about to fail and her right ear still passed, so that is good. The audiologist said it is important to keep checking though, because there isn't a time limit on when it could fail. It was an interesting experience to watch them check her left ear. It practically flat lined. It made me sad to see that basically, that ear really has has flat-lined. I knew already, of course, but seeing it visually was a bit different. We left with an appointment to be seen in 6 months instead of 3. Thank God for little breaks.
Then we went to the 4th floor for her KUB. The receptionist printed our stickers and sent us to the 8th floor. We checked in on the 8th floor and the receptionist wanted to see our order from the doctor, which was still on the 4th floor. So after some floor jumping, we got it sorted out. Somewhere between floors, KayTar had diarrhea through her pants. I took her to the bathroom to discover I had already used her last diaper during the ABR. So I went back to the receptionist and asked if by chance they had any diapers handy. She said they would give me one in the x-ray lab. So we waited a minute or two and were called back. KayTar's tush was saved by the kind radiologists and their stockpile of Pampers. Because I had to answer the question, "Could you be pregnant?" honestly, I had to wait in the hall while they did her x-rays. I heard her ask for me twice, but the techs did SUCH a wonderful job with her. They had her count and say cheese and kept her mind off the noisy giant camera. She didn't even cry! Big girl.
After the KUB was done, we ran to the cafeteria to grab a quick lunch. KayTar has milk and Cheetos. I had a Chik-fil-a sandwich and a diet DP. After swallowing my food whole for the most part, I called the pediatrician's office to let them know we were headed in for her flu shot. I know everyone has an opinion about the flu shot, but with KayTar's propensity for getting really ill from minor things, we're not going to play roulette with this one. We got there, signed in, and waited maybe 5 minutes before being called back. We saw the doctor in the hallway and said hello. The nurse gave KayTar her shot and she didn't even get out a whole yelp before it was over. She got a shiny star bandage and we were on our way. The shot was actually the easiest part of our day.
We left the house at 6:45 and got home after 2pm. And we were oh-so-tired. Of course KayTar couldn't nap because she had been sedated all morning, but she petered out about 4:45 in her chair.
Josh (who I (perhaps unfairly) don't usually think of especially emotionally astute although he is incredibly caring) came in the door and said, "She needs a break. She can't keep going like this. She's going to hate the doctors again. Every time she goes she is being poked and prodded. We have to figure something out." and I said, "You know, that is exactly what I had decided on our way out this morning." So we talked about it and after this week, she is going to have a two week vacation from EVERYTHING. No therapy. No doctors (unless she is sick). No tests. Nothing. After the two weeks, we will reinstate therapy, because we can't let those go for too long, but we are still going to try not to have any doctor's appointments for at least a month, if we could make it to the new year without any, that would be a dream. She deserves a normal childhood, even if we can only manage it for two weeks every once in a while. That in itself makes me a little sad. I shouldn't have to block off time for her to be a child. She's been having episodes for over half her life. We've been in this diagnosing hamster wheel for over a year now and we just have to take a step back, even if two weeks is all we can manage. She's only two and a large percentage of her experiences and memories are caught up in doctors and nurses and tests and needles and trips to the hospital and IVs and electrodes and hospital bracelets. Sometimes it just doesn't seem all that fair for her. We can all tell it is weighing on her right now.
Last night at bedtime, she was crying in her crib. Not a "I don't want to go to sleep!" cry, but a sad cry. I went in to check on her and she said, "Carry you, MomMom?" and so I picked her up. She put her head on my shoulder and touched my mouth with her palm and said, "Singing, MomMom?" and I said, "What would you like me to sing, sweetie?" and she said "Whoooa, what you doooo meee.." and I said, "Okay, baby." and sang through Hey There Delilah for her. When I was done, she patted me and said sleepily, "Good singing, MomMom." and I said, "Sleep time now, sweetie. See you in the morning." and she rolled over and curled up in her Gee. As sweet as those moments are, when she's feeling emotionally secure, she doesn't ask for them. I know that when she needs those extra cuddles or a song in Mommy's arms at the end of the day, it means that it is all getting a little too scary and she needs me to chase it all away for her. And so I will.
ETA: My dear friend Katie lost her mother suddenly last night. Won't you please, please stop by and leave her some comforting words? I know nothing can heal her pain, but it is nice to know people are thinking of you when your heart hurts so very much.