Day 1:

Two days earlier at Dr. Brennan's office

Day 1: August 18, 2010

My heart feels very heavy right now. What started off as strange and somewhat annoying behaviors two weeks ago now seem like cataclysmic warning signs about something I did not want to discover!

About two weeks ago, Nina started drooling. It was annoying at first; we'd frequently have to remind her to wipe her mouth as she was sitting at the dinner table or playing outside with her brother and neighbors. A couple days after the drooling began, she started to sleep talk and/or sleep walk on a nightly basis. The sleep talking/walking had actually started a month earlier but there had been few episodes. Now, she was sleep talking/walking every night, all night. In fact, on average she woke up approximately every 1.5 to 2 hours. Usually, she would sit up quickly then proceed to either laugh or cry hysterically for about 20 seconds then immediately collapse back into sleep. During the day, she would be a little sluggish but we were not alarmed given how poorly she was sleeping.

As for the drooling, we'd ask if something was hurting (her mouth or throat) and she'd always deny it. One night, all four of us were hanging out on our bed when I noticed that she had drooled an entire pool onto Todd's chest. Again, I asked her if her mouth hurt and she said no. Then I asked to see her mouth and noted what looked like molars growing in. My sweetheart immediately became excited  and told anyone who would listen, "I'm getting my molars!"

By the end of the second week, not only had the drooling and sleep talking/walking continued, Nina had also become non-responsive at times. Both Todd and I were now concerned, wondering if the fatigue from not sleeping well was making her susceptible for developing a cold. On a daily basis, Nina would seem to have episodes where she'd "check-out". If we spoke very loudly, touched her gently, our snapped our fingers near her, she would snap out of her trance.

On Friday the 13th, the kids and I went to Irvine to spend the weekend with Yvonne, Robert, Niels and Sander. It was Niels' 9th birthday party and the kids were super excited to spend not one, but two nights. Todd stayed in Santa Barbara because he had much to prepare for work that started on Monday. Again that night, Nina woke up about every 2 hours, looking around and mumbling unintelligible utterances. Several times she looked right at me and gave me a kiss :) Each of these episodes lasted no more than 30 seconds, then she'd plop her head back on the pillow and continue sleeping. On Saturday morning, she woke up bright and early and in a great mood. During breakfast, we noticed how she was shoving food into her mouth then gagging. During the previous week, Todd had actually called me to say that he'd almost had to do the Heimlich on her because she had choked on her lunch. He'd been pretty shook up by the entire experience. Now, at Yvonne's house she was once again mishandling her food and risking another choking episode. This behavior concerned me so much that I resorted to cutting her food into tiny pieces and monitoring what she put in her mouth like a hawk.

After breakfast, we went to mini-golf where she played the first 10 holes with great enthusiasm. After the 10th hole, and without consulting anyone, she decided she was done and proceeded to pick up her golf ball, walk over to the next hole, drop the golf ball into the cup, pick it up and then proceed to the following hole. She did this, much to everyone's amusement, until she finished the 18th hole and proclaimed that she was done. After mini-golf she swam with the boys and had a blast. It wasn't until dinner that she became very fatigued and required me to feed her because she kept over-stuffing her mouth with noodles and practically choking. At this point, Yvonne commented on how odd she was behaving, from the listlessness to the non-responsiveness. To make matters even more bizarre, we found her sitting on the couch later that night, staring blankly into space and drooling. Robert jokingly said she looked stoned, which she did. On Sunday, her overall lethargy and unresponsiveness continued. Given that Robert and Sander had colds and that her friend David had been recently diagnosed with strep throat, we concluded that her behavior was concerning but probably a result from being sick, even though she was not sneezing, did not have a runny nose, and did not have a fever.

On Monday morning, we had a play-date at the Autism Center and her drooling had increased even further. Although she played with the little girl, she was not her usual spunky and happy self. In fact, the little girl with ASD was way more engaging and responsive than Nina. By this point, it had also become apparent that she was having difficulty swallowing. After about an hour, I became concerned that she might be contagious and the other child's mother suggested that she might have a throat infection. I quickly set up an appointment with my pediatrician and apologized to the other family for potentially exposing them to a bug. We returned home where she spent the rest of the early afternoon playing outside with her brother and two neighbor friends, Cami and Katie. She seemed in good spirits and even seemed to have perked up a bit. The odd drooling remained, and I noticed that she was putting her hair and hands into her mouth much more than in previous days (we had actually noticed the mouthing behaviors several days earlier but again chalked them up to teething). I explained to her that putting things in her mouth was not healthy and asked her to stop and she apologized. However, two seconds later, she'd have her hair back in her mouth.

Around 4pm, I took her to pediatrician's office, where Dr. Brennan took a throat culture because her throat was a bit red. He said it was probably strep and that we'd get a call on Wednesday to confirm results. Given all the symptoms I had described (i.e., sleep talking, drooling, putting things in mouth, choking) he noted that if the test came back negative then we should return and have some blood work done because she could have developed mono. She happily said goodbye, got her lollypop, and off to dinner we went.

On Tuesday, her lack of energy became even more apparent. She seemed to meander several feet behind the other kids when playing outside, refused to ride her bike, and was a bit more cranky with her brother. During dinner, Todd and I discussed how lethargic and out-of-it she seemed. Todd was very concerned and I was more annoyed, particularly when I kept finding her with her hands, shirt, or hair in her mouth over and over again. Each time I'd scold her, she would apologize. I asked her why she kept putting things in her mouth and she'd reply that she didn't know. Repeatedly, we asked if anything hurt and she would also insist that nothing did. We talked about how she was eating and drinking fine and that she was not demonstrating any other symptoms consistent with a flu or cold. Todd commented on how he really hoped that she didn't have mono, especially because she was starting school in a week! Nina had been ready to start kindergarten for the past two years, and we were bummed that she might have mono! That evening while we were all sitting on the couch, she started doing some odd motor mannerisms (e.g., arching her head back, humming). Most alarming was her weird kissing behavior...that is, she'd reach over and try to kiss us with a totally open mouth, slobbering all over our checks. I asked her who had taught her to kiss like that (first thing that had come to my mind was that someone had molested her!!) and she reported no one had. Her kissing behavior persisted and increased throughout the course of the evening that I began to freak out that someone had molested my little girl. So...as she took a bath, I asked her if anyone had touched her privates. She looked at me with those beautiful hazel eyes and snorted, "NO!". Irrespective, something in the pit of my stomach that night told me something was not right. During bedtime that night, she and Todd cuddled on our bed and he expressed how concerned he was about a honey girl. I admitted that I was too!

Wednesday morning came and went with no call from the doctor's office. Although she played outside, she was extremely unresponsive and drooling incessantly. By the time it was 2 pm I decided to call the doctor's office and find out what the test results were....NEGATIVE! This did not make me happy at all....if she didn't have strep then what the heck did she have?? I asked for an appointment with Dr. Brennan and the lovely nurse obliged. Seconds later, our sweet babysitter Jenny walked in with the kids dripping wet from the pool. Jenny reported that Nina had done great in the pool but confirmed that she had been generally fatigued. The kids changed their clothes, Teddy convinced the neighbors to let him stay and play some more with Katie and Cami until Todd arrived from work :), and Nina and I drove to the pediatrician's office. Little did we know that would be our last innocent visit to Dr. Brennan's office. 

When we met with Dr. Brennan at 4:15, I explained that I was concerned about all of her symptoms and wondered if indeed she did have mono. As we talked, he noticed how unusual she was behaving (i.e., mouthing, humming, odd head gestures, unresponsive). We talked about mono but I could tell he wasn't convinced that mono was the culprit. He suggested that we collect a blood sample to rule out any viruses. As we dialogued some more, he recognized that my concern was not the normal "my kid has a bug" kind of concern. He turned to me and asked me what my gut was telling me. I explained that I was really concerned about the drooling, the motor mannerisms (including the mouthing), and the general lack of responsivity. As we were having this conversation, Nina was literally mouthing the chair. I turned to Dr. Brennan and told him the symptoms felt degenerative to me. This was sufficient to raise his level of alarm and we spent the following 2 hours dissecting every possibility (i.e., poisoning, botulism, mosquito bites). Throughout these exchanges, I would intermittently text Todd and ask him to make sure that she hadn't gotten into any rat or gopher poison. At one point, Todd called fairly concerned that a rat poison pellet seemed to be unaccounted for. Both my mind and Todd's were racing. Dr. Brennan suggested that we add a tox screen to the blood work just to rule out any possible poisoning. To make matters worse, Nina began to engage in her odd kissing (i.e., open mouth sucking) behavior. I pointed this out to Dr. Brennan and told him that this seemed like infant/toddler-like behavior, adding more fuel to my degenerative concerns. Dr. Brennan then excused himself and said he was going to consult with some colleagues.

It seemed like we waited in that room for a long time. At one point, a nurse came in and said they'd return shortly to collect blood, which completely freaked Nina out. She cried for about 15 minutes when another nurse returned and said that Dr. B was holding off on collecting blood here. Several minutes later, Dr. B returned with a visibly concerned look on his face. I could tell that he was nervous and proceeded to explain that I was used to telling people bad news and recognized his expression. Gently (as Dr. Brennan always is!), Dr. B said he had been consulting with his colleagues and that they agreed with me that something about her symptoms was alarming. He then suggested that instead of collecting blood there and arranging for other tests elsewhere for tomorrow, that we should go have dinner and then go directly to Cottage Hospital to be admitted for a series of comprehensive exams. He calmly explained that Dr. Wheeler was a close colleague of his and could thoroughly compile a battery of tests to determine what was going on. I did not hesitate and was thankful for the attentiveness to detail and time. As Dr. B escorted us out of the dimly lit hallway of the clinic, which had long since been closed, I thanked him for all his help, but couldn't help but feel a gnawing pang grow in my stomach.

By the time we arrived back home, Nina could hardly keep her hands, dress, or hair out of her mouth for a split second. She was extremely tired and I asked Todd to monitor her eating while I packed our bags. Todd had picked up Panda Express per Nina's request. She ate her orange chicken and rice, we kissed the boys goodbye and off we went to Cottage.

Upon entering the lobby at Cottage at 7:30 pm, Nina became ecstatic at the idea of having "girl's night out". She eagerly climbed into the wheelchair and we found our way to the 5th floor Pediatric Unit. All the nurses smiled at Nina's obvious excitement about being at the hospital. As we entered our designated room for the night, she proclaimed with complete and utter happiness, "I get my own room, with my own toilet and my own tv!" The nurse and I laughed! Only Nina would be excited about spending the night at the hospital. If Teddy had been in her shoes, he'd been screaming to go home the moment we walked into the lobby :) Her giddiness and compliance with all of the nurses' requests was so endearing that I texted to Todd, "Weaker sex my ass!" to which he painfully replied, "That's my honey girl!"

Within about half an hour of being admitted to the hospital, Dr. Wheeler arrived. She was the sweetest of doctors, with a brilliant and comforting smile, calm and soothing voice, and a playful bedside manner that Nina ate right up. During the course of the next two hours, Dr. Wheeler asked me a battery of questions (e.g., family history, symptom onset) and did a variety of physical tests with Nina (e.g., motor imitation tasks, muscle strength assessments). Words like muscular dystrophy, seizures, facial muscle weakness, ataxia flew around my head. Perhaps because I work with the special needs population and am very familiar with disabilities, the lines of questioning Dr. Wheeler engaged in raised my anxiety each and every minute that passed. The worst and final blow, cementing the graveness of the matter in my mind, was when Dr. Wheeler asked Nina to stand up with her feet next to each other. The sweet girl desperately tried to do so but couldn't without swaying and practically falling over. Watching this scene was like watching an episode of House where the doctors were trying to figure out what mystery illness lurked underneath a myriad of crazy symptoms. My heart sunk into a place it had never known even existed. I sat quietly as I witnessed my precious baby girl deteriorate in front of my very own eyes. With each passing minute, her gait and control over her own body seemed to weaken. She clumsily tossed and turned across the bed, and required constant spotting when she walked around lest she bump into furniture or fall to the ground.

Throughout this entire scene, Dr. Wheeler warmly interacted with Nina and continuously gave me reassuring smiles. However, nothing about the behaviors in front of me was reassuring. Moreover, as Dr. Wheeler completed her assessments, I was continuously texting Linda Marban with my observations and questions. Linda relayed to me specific things to ask and watch for and reassured me that she and Eduardo were ready to jump in and help in a moment's notice!

I knew we were in deep trouble before sweet Dr. Wheeler turned to me and said we needed to do an MRI to really find out what was going on. She then proceeded to explain that she thought it unlikely to be something infectious but rather the symptoms seemed to have more of a neurological feel to them. I turned to her, as I had done with Dr. B, and asked her to not sugar-coat things for me. I explained that while she had been examining Nina I had watched and recognized serious redflags. She tried to further explain that the motor difficulties Nina was exhibiting, including the constant drooling, were directly associated with the posterior area of brain, such as the brain stem. She said that the symptoms could be related to a number of things (including a seizure disorder or growth) but that a MRI was required in order to make a final diagnosis. Before leaving, she tried to reassure me as much as humanly possible and I thanked her for all her patience and diligence. As she walked out, I looked at my baby who was happily lying in bed watching Hannah Montana on her "own tv" and prayed for a seizure disorder! What a weird experience...to pray for a seizure disorder.

At this point, my head was spinning. I called Todd and told him it was not going to be mono and that Dr. Wheeler thought it was neurological. Todd's silence was looming and we both knew we were about to embark on a journey neither of us could have ever imagined a few hours earlier. I told Todd I loved him and he said goodnight to his little girl. By now, it was 11 pm and I asked Nina to scoot over so I could cuddle with her. However, she reminded me that I had promised her a bag of chips if she did a good job with Dr. Wheeler. My promise, plus the prospect of her not being able to eat anything after midnight and until she had the MRI done, sent me wandering around the hospital corridors. I found the blasted chips and returned to find her practically asleep. When I announced my success at finding Doritos, she rolled over to face the wall, closed her eyes and said she wasn't hungry anymore! Go figure!!! That's our Nina!!

As soon as she feel asleep, I went into the bathroom and called my friend Yvonne. During Dr. Wheeler's assessment, I had also been texting with Yvonne. When Yvonne picked up the phone, the tears came rushing out! I retold the events of the previous two hours and told Yvonne I had a really bad feeling. Something deep in my heart told me I was going to be lucky if it was a seizure disorder. Yvonne tried to comfort me, being the amazing friend that she is. All I could think of was Nina being sick and Todd and Teddy's anxiety!! My mind spun and I felt like I was going to vomit! I hung up the phone with Yvonne and called my father-in-law Gordy. Gordy has the best voice in the world! It is warm and oozes with strength. When he said, "Rosy, talk to me!" I completely lost it! I explained my fears and begged him to get ready to come because Todd was going to need his dad! Gordy reminded me that God's presence was constant and that His love and grace would surround us. Throughout my entire young adulthood, Gordy had been the epitome of trust in Christ's word. I asked him to pray and he reassured me that he would be ready when I called.

When we hung up, I sat in the dark bathroom and cried out to God that Nina be okay. I pleaded with the heaviest of hearts. I promised that I would clean up my act and face any obstacle with humility...but please let my child be okay!!! I dropped to my knees in that coldest of rooms and cried out like a child. It did not seem real....these kinds of things happen in the movies or to other people....not to me! I even found myself praying for a seizure disorder....how insane!!! Never in my entire life had I experienced fear like that! In the same room, not even 15 feet away, lay my daughter, my sassy treasure. How could she be so close but feel so far away!!!

The room began to feel like it was spinning. I knew I was hyperventilating so I sat up and commanded myself to take a deep breath. By the grace of God, I pulled it together. I stood up, washed my face, and called our friend John Becchio. I reminded him that Todd would not be at work the next day and asked him to be ready to join us at the hospital when we got the diagnosis. I explained that I was convinced it was not going to be good and knew that Todd was going to need a friend!

Always ready to have fun!

I love all of our friends and family! We are so blessed! But it is interesting how we all try to protect the ones we love with hollow words of reassurance. "It's going to be okay!" These words are said out of pure love, albeit with little fact or ground to stand on. We say these words because there is nothing else to say.

Yvonne, Gordy, the Marbans, John...they all reminded me of how much they loved us as a family and loved our little Nina Banina. I crawled into bed with Nina and said the Lord's Prayer over and over again. It is amazing how in your scariest of moments as an adult, you revert to the comforts and routines of childhood. As a child, I said the Lord's Prayer each night before bed. As an adult, I learned to pray openly to God about what was on my heart and mind. But now...holding my deep breathing girl, surrounded by continuous beeps from the IV and monitors, I returned to the comfort of my childhood.

Our happy girl two days earlier- still our 5 year old