It started as a comment my mother-in-law made while I was on the phone with her the week before the MRI. Something along the lines of, "So about this...MRI birthday." It was impossible to delineate one from the other in my mind, and it seemed others' too. I started referring to is as a hashtag to keep it lighthearted and keep the panic from surfacing. Every time I tried to think about her birthday, or plan for her party, there was this nasty whisper in my head that wouldn't let me get past the MRI. I couldn't reflect on the past year, couldn't get past that wall in my mind. I was terrified of a reaction to sedation, to contrast, of her never waking up. I read safety stats. It was riskier for us to drive her to the procedure than for her to have it. I knew that. I trusted that. But something my brother's oncologist said eons ago would reverberate back: "Statistics don't matter when it's your child."
Lilah got up bright and early after a Star Wars marathon the night before. She crawled into bed with us and we wished her a happy birthday. She was all smiles and snuggles. She got a white popsicle and tea to get something in her stomach but stick to clear liquids. She painted and finished Star Wars. We got dressed and collected her presents so she could open them when she woke up. We drove to the hospital.
She held her Elsa doll and sang Cherry Wine by Hozier in the backseat. We parked and walked her into the Imaging Center. I kept checking my phone like a lifeline. Every 3 seconds or so it would "thrrrpt" in my pocket. Every 3 seconds was someone who loved me and my family keeping me from absolutely losing my shit. I got her registered, filled out her paperwork, and they put her arm band on her. And we waited. She squeezed Elsa harder and tiny lines formed on her guileless little face that almost never wore creases. Receptionists complimented her crown and her bird dress and sweater, said how pretty she looked. She smiled and thanked each one, but it wasn't a real smile. She was pensive. They said she looked pretty, but I knew better. She has picked her outfit so carefully. She wanted her crown and bird dress because she wanted to feel like herself. She was wrapped in the sweater I made her because it was a security blanket.
They called us back to another room where she changed into a gown and hospital pants. She stayed on my lap and snuggled close to both of us. She refused the iPad a mom offered when the girl ahead of us got taken back. She just sat. The anesthesiologist came back and asked Lilah if she knew what she was there for.
"You're going to take pictures of my brain. You're going to send pictures of my brain to my doctors because they want them."
"You're right! And the best way to take those special pictures is if you're asleep, so..."
"So you're going to give me special medicine to make me go to sleep."
"Yes! You're so smart!" She turned to me. "Any metal implants, allergies, asthma, heart conditions..." Lilah answered again.
"No metal. They said no metal. I can't have cow milk. No asthma." The doctor said they'd give her medicine in a mask mixed with air, then start an IV to keep her asleep. Then they'd wake her up and come get us. Did we have any questions?
"And if...if she has a reaction to the sedation, or the contrast?"
"It's usually very well tolerated, and we'll be monitoring her vitals the entire time. We have an emergency kit, just in case." I nodded. I had to ask. I knew, but I had to hear her say it. Just in case. Just in case. She handed me the form to sign. I signed. She left the room and they came for her a few minutes later. I let go of her hand and she walked away down the hall. I had to consciously keep breathing and not scream. Inside I was screaming. She rounded the corner and I walked the other way. Not down the hallway after her to yank her away from them. We made it to the waiting room. Dano and I talked and kept each other company for over an hour. I jumped every time I heard an overhead page. I watched the double doors every time someone came through. They finally called us. We went back to the recovery room and the nurse said she had just opened her eyes. She saw us. I saw her looked relieved. She rolled over contentedly.
"She was just asking for you." I thought my legs would collapse but they didn't. She sucked down an apple juice and a water and ate two graham crackers. They gave her a teddy bear and she sat up. The nurse said she could get dressed. She reached for her bird dress, and we handed her a present.
"You can wear this instead, if you want." She tore it open. It was her Rey costume. She squealed and thanked us, and tried to stand up on the gurney to put it on, swaying where she stood. The nurse held her while I dressed her. She kept squealing and saying how great she looked. She was pissed when they sent Dano out to pull the car up and made her get in a wheelchair.
"I CAN WALK." She finally agreed to sit in the wheelchair, but only on my lap, and she glared at the nurse pushing us the entire time.
We spent the rest of the day having tea and sandwiches, watching movies, and playing Legos. I think we could have gotten home to the house burnt to the ground and I'd have been okay. I had my family, and we were enough. I tucked Lilah in to bed and I told her how brave she was, and how proud I was she was mine. She snuggled down in her covers and fell almost instantly to sleep.
Thursday, March 24, 2016
Wednesday, March 23, 2016
Suppression
I feel like the past couple of months have been this insane whirlwind of activity, but in a good way. At Lilah's last IEP meeting, I was finally feeling pretty amazing about everyone involved in her care. Her OT Meghan said she still felt like there was a missing piece and wanted to call in a vision specialist from the county to evaluate her. I signed the piece of paper requesting the evaluation. It was also decided at that meeting that any and all formal testing for Lilah would be shelved for the time being. Her limitations made it impossible to administer a test and get accurate results.
The weeks past and Lilah was scheduled for a rough time of it when it all finally came together. On a Monday, the Oakland County specialist would be at the school to evaluate her first thing in the morning when she was at her best. Tuesday she'd be evaluated by the Beaumont Hospital vision therapists. Wednesday she would follow up with her neurologist.
Monday I paced around the school office waiting for Lilah to emerge from testing so the team and I could sit down with the evaluator and hear her findings. I finally saw Meghan escorting a smiling Lilah back to class. A few minutes later we were all sitting around a table while a tall woman with blonde hair started pulling out weird charts and tools and going over her notes. The conversation is still kind of a blur of incredulity for me, but the basic takeaway was that 1) Lilah for the most part has no depth perception, and what she does have comes and goes. If she were wearing 3D glasses to watch a movie, she'd still see it in 2D. 2) She has 20/20 vision, a wide visual field, and sees color very well, but her processing speed is about 3x longer than most kids her age. If she were to take a timed test, she would do very poorly, even though her knowledge was at 100% accuracy. She performed best with 20pt font in Comic Sans. 3) and probably the most alarming to me, was alternating suppression of her vision. It was explained like a highway that should have three lanes for motor, auditory, and visual feedback. Instead, hers had two lanes and her brain shuts out her eyes when it feels overwhelmed. One at a time normally, sometimes both. She had me put on glasses to show what Lilah saw. Halfway through reading a word, my eye dominance would switch and and the text would look redacted.
"This is what trying to read looks like for her?"
"Yes. She can be trying to focus on a word and when her left eye gets to midline, she might blink and the rest of the text might go black. Or she can be reading along from midline on with her right eye, and when she goes down a line, her left eye might go black."
I felt like the world's biggest asshole for every time I'd get frustrated with her for knowing a sight word one day, then not knowing it the next. Or knowing phonics really well but not being able to sound out basic words yet. Or not being able to find a sock in a sock drawer. Or falling or tripping in her own house in her own room.
The takeaway was that we needed to introduce concepts in a quiet room with 20pt, Comic Sans font in yellow or red text on a black background. She said we needed to put yellow tape on stairs and corners and common walkways where she got hurt most often, and orange cones in gym to alert her where perimeters were. I felt like I stumbled out of that meeting under the weight of new information.
On Tuesday, the Beaumont visual therapists took the information I gave them about the day before and built their testing on where Oakland County had left off. They agreed, but added tracking problems and issues converging to the mix. Amy, the visual therapy COTA, wanted to spend their time really integrating her ATNR reflex and improving her bilateral coordination WHILE strengthening her visual skills. The things they had her doing she felt were fun. Lying on the ground with a white ball swinging overhead while she tracked it, or singing a song while doing half-snow angels, one side at a time. Amy did note that Lilah would tap next to the text that was suppressed, to "turn it back on". That was promising that she could be rehabbed. Apparently some kids lost the feedback for the entire day once it went out.
Wednesday we checked in with Dr. McCormick. I gave her the run down of the previous few days. She said Lilah's overall tone and strength had improved, but honed in quickly on the new problem areas. She moves with this grace and precision and her eyes scan and take things in. She reminds me of a bird, the way she tilts her head and leans in, getting a better look or feel for what she's trying to understand. She said Lilah's tracking WAS choppy and she didn't converge or diverge well. She wanted us to check in with Dr. Rao, Lilah's ophthalmologist, and get an MRI with contrast to make sure her vision problems weren't a congenital cyst on the brain or anything else. "Or anything else.". I asked if it could be without sedation. She explained the test to Lilah, who requested to be asleep during the test. So I was convinced, if that's what she wanted. Just sad and apprehensive.
Dr. Rao said there was nothing wrong with her eyes and her tracking issues were something she'd grow out of. Weekly vision therapy improved her skills and her reading was coming along more all the time. We put the yellow tape throughout the house and the falls and walking into corners all but stopped. The schedule for the MRI only allowed it to take place on her birthday. I was devastated. She was optimistic and sunny.
At work the day before the test, I faked through the day with a smile. Dr. Kolin, whose youngest daughter had so many similar issues and went through vision therapy, asked about the MRI. She was warm but matter of fact. "It's so nice this will be off the table, since they aren't going to find anything. My daughter had one too, and now even in college, every time she gets a headache it's one less thing I have to worry about."
Even though she would have to spend her birthday fasting, the plan was to take her to her favorite tea room when she was awake and felt like eating and she'd have lunch and dessert and tea and get her presents. A Rey costume and lightsaber, after going through her "Jedi training" earlier that day. I knew how excited she'd be about getting to dress like her favorite character from the movie. As I was leaving for the day, one of the other doctors sent his best wishes for the day to go by quickly and her birthday after to be great. He ended the message with MTFBWYA - May the Force Be With You, Always. I closed my eyes tight but one tear got out. She was so loved, and well taken care of. We lived in an area where Lilah could get the help she needed from people who could actually give it. People with incredible expertise and intuition, compassion and patience. Lilah herself overcomes mental and physical obstacles every day and fights against her own body and still smiles when she sees the white crocuses open outside her window and lives to hear the birds sing in the morning. She'll give up her lunch because I sent her with fish and the little girl she sat next to said she was allergic, so she doesn't want to hurt a friend. This little girl amazes me every day and I feel like I can never do right by her and give her the existence she deserves. But the Force really is with this one, and I know she'll come out stronger on the other side.
The weeks past and Lilah was scheduled for a rough time of it when it all finally came together. On a Monday, the Oakland County specialist would be at the school to evaluate her first thing in the morning when she was at her best. Tuesday she'd be evaluated by the Beaumont Hospital vision therapists. Wednesday she would follow up with her neurologist.
Monday I paced around the school office waiting for Lilah to emerge from testing so the team and I could sit down with the evaluator and hear her findings. I finally saw Meghan escorting a smiling Lilah back to class. A few minutes later we were all sitting around a table while a tall woman with blonde hair started pulling out weird charts and tools and going over her notes. The conversation is still kind of a blur of incredulity for me, but the basic takeaway was that 1) Lilah for the most part has no depth perception, and what she does have comes and goes. If she were wearing 3D glasses to watch a movie, she'd still see it in 2D. 2) She has 20/20 vision, a wide visual field, and sees color very well, but her processing speed is about 3x longer than most kids her age. If she were to take a timed test, she would do very poorly, even though her knowledge was at 100% accuracy. She performed best with 20pt font in Comic Sans. 3) and probably the most alarming to me, was alternating suppression of her vision. It was explained like a highway that should have three lanes for motor, auditory, and visual feedback. Instead, hers had two lanes and her brain shuts out her eyes when it feels overwhelmed. One at a time normally, sometimes both. She had me put on glasses to show what Lilah saw. Halfway through reading a word, my eye dominance would switch and and the text would look redacted.
"This is what trying to read looks like for her?"
"Yes. She can be trying to focus on a word and when her left eye gets to midline, she might blink and the rest of the text might go black. Or she can be reading along from midline on with her right eye, and when she goes down a line, her left eye might go black."
I felt like the world's biggest asshole for every time I'd get frustrated with her for knowing a sight word one day, then not knowing it the next. Or knowing phonics really well but not being able to sound out basic words yet. Or not being able to find a sock in a sock drawer. Or falling or tripping in her own house in her own room.
The takeaway was that we needed to introduce concepts in a quiet room with 20pt, Comic Sans font in yellow or red text on a black background. She said we needed to put yellow tape on stairs and corners and common walkways where she got hurt most often, and orange cones in gym to alert her where perimeters were. I felt like I stumbled out of that meeting under the weight of new information.
On Tuesday, the Beaumont visual therapists took the information I gave them about the day before and built their testing on where Oakland County had left off. They agreed, but added tracking problems and issues converging to the mix. Amy, the visual therapy COTA, wanted to spend their time really integrating her ATNR reflex and improving her bilateral coordination WHILE strengthening her visual skills. The things they had her doing she felt were fun. Lying on the ground with a white ball swinging overhead while she tracked it, or singing a song while doing half-snow angels, one side at a time. Amy did note that Lilah would tap next to the text that was suppressed, to "turn it back on". That was promising that she could be rehabbed. Apparently some kids lost the feedback for the entire day once it went out.
Wednesday we checked in with Dr. McCormick. I gave her the run down of the previous few days. She said Lilah's overall tone and strength had improved, but honed in quickly on the new problem areas. She moves with this grace and precision and her eyes scan and take things in. She reminds me of a bird, the way she tilts her head and leans in, getting a better look or feel for what she's trying to understand. She said Lilah's tracking WAS choppy and she didn't converge or diverge well. She wanted us to check in with Dr. Rao, Lilah's ophthalmologist, and get an MRI with contrast to make sure her vision problems weren't a congenital cyst on the brain or anything else. "Or anything else.". I asked if it could be without sedation. She explained the test to Lilah, who requested to be asleep during the test. So I was convinced, if that's what she wanted. Just sad and apprehensive.
Dr. Rao said there was nothing wrong with her eyes and her tracking issues were something she'd grow out of. Weekly vision therapy improved her skills and her reading was coming along more all the time. We put the yellow tape throughout the house and the falls and walking into corners all but stopped. The schedule for the MRI only allowed it to take place on her birthday. I was devastated. She was optimistic and sunny.
At work the day before the test, I faked through the day with a smile. Dr. Kolin, whose youngest daughter had so many similar issues and went through vision therapy, asked about the MRI. She was warm but matter of fact. "It's so nice this will be off the table, since they aren't going to find anything. My daughter had one too, and now even in college, every time she gets a headache it's one less thing I have to worry about."
Even though she would have to spend her birthday fasting, the plan was to take her to her favorite tea room when she was awake and felt like eating and she'd have lunch and dessert and tea and get her presents. A Rey costume and lightsaber, after going through her "Jedi training" earlier that day. I knew how excited she'd be about getting to dress like her favorite character from the movie. As I was leaving for the day, one of the other doctors sent his best wishes for the day to go by quickly and her birthday after to be great. He ended the message with MTFBWYA - May the Force Be With You, Always. I closed my eyes tight but one tear got out. She was so loved, and well taken care of. We lived in an area where Lilah could get the help she needed from people who could actually give it. People with incredible expertise and intuition, compassion and patience. Lilah herself overcomes mental and physical obstacles every day and fights against her own body and still smiles when she sees the white crocuses open outside her window and lives to hear the birds sing in the morning. She'll give up her lunch because I sent her with fish and the little girl she sat next to said she was allergic, so she doesn't want to hurt a friend. This little girl amazes me every day and I feel like I can never do right by her and give her the existence she deserves. But the Force really is with this one, and I know she'll come out stronger on the other side.
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