Start Spreadin' The News... Part Two

Teeny had two very big appointments last November. The first appointment was with a neurologist at Harvard and Mass General who specializes in cerebellar dysfunction. It took me two and a half years to get this appointment. Back in 2012, post-MRI, I read a bunch of medical articles about cerebellar hypoplasia and saw his name listed as author over and over. I felt like he might help us understand how Teeny learns, since his research led efforts to prove that the cerebellum does more than control motor function. He believes that it plays a role in learning and cognition. This doctor is mostly a researcher who rarely sees patients and even more rarely sees pediatric patients, but I felt that if I could just get him to look at her MRI, he would be interested. So I called and I emailed and I called more and I emailed more and I was on the verge of giving up when I heard an interview with him on NPR here, and this part was like saying Teeny's name:

"Research .... supports the idea that the cerebellum really has just one job: It takes clumsy actions or functions and makes them more refined. "It doesn't make things. It makes things better," Schmahmann says. That's pretty straightforward when it comes to movement. The brain's motor cortex tells your legs to start walking. The cerebellum keeps your stride smooth and steady and balanced. "What we now understand is what that cerebellum is doing to movement, it's also doing to intellect and personality and emotional processing." 

This re-ignited my spark, so I started calling and emailing again... and finally, finally, we got an appointment. This is really great news, right? YES. And it was also terrifying. Johnny was worried that he would tell us that we caused this, that we were somehow too rough with her and hurt her brain. A tiny part of me heard the naysayers in my head saying that her homebirth was what caused it, even though I knew better. Deep down I was worried that he would tell us he doesn't know what caused it or how we can help her. I didn't share Johnny's worry because I know we didn't cause it, and he didn't share my worry because he knows that with everything we do with her and for her, we are helping her already. So we had to agree to set aside our worries and just show up with an open mind and hear whatever he had to say. 

And what he said was that Teeny has genetically caused pontocerebellar hypoplasia.

Do not Google this unless you are prepared to see something horrible. The bad news is that PCH is devastating. It's rare. It's often fatal, often in infancy. The good news, if there can be good news when your child has PCH, is that this doctor believes that she has a new variant, and that this new variant is not neurodegenerative but rather neurodevelopmental. That is fancy for the fact that when Teeny learns a skill, she keeps it. She is more capable than she was at birth, where most kiddos with PCH by contrast lose abilities as time goes on. He said there is no question about her diagnosis from her scans but that she has more to teach us all because while she and PCH2A kids (kids with the most well studied variant) have some symptoms in common, such as being small and borderline (or not so borderline) microcephalic, being very sleepy as newborns and hard to rouse, having issues with tone. But where most PCH2A kids have terrible seizures, difficulty with talking and walking, and none of them eat on their own, Teeny is completely different. He was very, very surprised at her abilities. But he didn't really know what to make of what he saw. In short, after three hours of testing and discussion, we left feeling confused. We got a lot of information but none of it actually changes anything. Now we know there is so much to do, but there is nothing to do. We are doing everything right, but there is no cure. There is no way to know how she will do, since most of the children who have gone before her have already died. He said that just by looking at her scans and at the exact areas of damage to her cerebellum, he could predict some areas of strength and some of weakness. He said she could start to seize anytime. But he also said that it was his firm belief that he could prove this was autosomal (genetic) and recessive. He felt Teeny's story has not yet been written, and I asked him if he would be the one to write it. He said yes! I asked him if that meant he would be her new neurologist and he said he would be delighted. We have a lot to learn from him and my hope is that he feels he and medicine in general have a lot to learn from her. 

So great, now we know that I didn't cause it and Johnny didn't cause it but in reality, we both caused it because apparently we are both carriers of this terrible thing. How can that be? PCH is so rare that there are maybe 100 cases worldwide, yet he -- this person I really believe is as close to a soulmate as one can possibly have -- and I -- this adoptee with a hodgepodge of unknown genetics --  came together and made this happen? That is too much for me to wrap my head around, so we'll just leave it there for now.

Her second appointment was for a neuropsychological evaluation, which was done the following day by a colleague of the neurologist also at Mass General. We decided to do this to help us understand how she learns and what her potential could be. Schools like these evaluations to help make their admissions decisions because the test evaluates school readiness and, somehow, cognitive potential. It also makes recommendations for educational settings and related services. This test is a very big deal and usually a very expensive deal. When we had it scheduled in New York, we were quoted upwards of $6,000 and no one took insurance. But because this one was set up in conjunction with the neurology testing and because this particular neuropsychologist happened to be in my network, we paid nothing. Not even a co-pay.

The neuropsychologist and her assistants completed the testing in a few hours; it resulted in fourteen pages of confusing scores, recommendations and other details. The document does not do my daughter justice. She is so much more than scores and observations and a litany of things she cannot do and a short list of things she can. And at the same time, the neuropsychologist and those who worked with her that day did have some insights into her abilities and her potential. As much as I hate to admit it, the document does in some way describe her. The bottom line is twofold: one, PCH is so rare and strange that her strengths and weaknesses are a little all over the place (so, for example, she tests very high for "school readiness" but very low on visual spatial skills) so her scores are essentially meaningless because their pattern is that they have no pattern, and two, because of her strong social, emotional and verbal aptitudes, there is no better setting for her than an integrated, supportive classroom.

Which is exactly what we knew all along.

Christmas Came Early

This has been an interesting week. I feel like I'm on a see-saw. See-saws always scared me when I was a child because the bigger kids would push up or bump down hard on their end and I, younger, smaller and much more of a crybaby than my peers, would go flying off of my end. I always thought I was the only wimpy kid afraid of the see-saw, but now that I am a parent I look around playgrounds and you know what? They don't have see-saws anymore. So I guess I wasn't the only one.

Last weekend, Bee came down with a terrible cold. When she gets sick, we are clued in before she's even symptomatic by how clingy she gets. "I need you, Mama," she says over and over, trying to melt into my lap. The only way she could get any closer to me when she's feeling clingy would be if she unzipped my skin and snuggled in with my bones. I said that to her once and now she's always asking, "Where are your bones? I want to see your bones, Mama."

Soon she was milking it. Sick enough to stay home from school but just well enough to know how to get whatever she wanted from us by being both adorable and manipulative, she bundled up in a giant skull-print bathrobe and wandered around sighing and saying "Mama, I don't feel very well today." She and Johnny and Teeny piled up on the couch, watched lots of Sesame Street and read a zillion books (including Llama Llama Home with Mama, which our PT brought for her and which I recommend to any mama of sick kiddos). She went through so many tissues that her nose was angry and red. We glopped the Vaseline on her nose and the Vicks on her chest and she was in fairly good spirits about the whole thing. It helped that we made cupcakes and she started to drink tea like Mama. It was pretty cute.








It was cute, that is, until everyone else started to get sick too. By Monday morning, it was clear that Teeny was next. She barely made it through her morning OT and we canceled her PT, but she had a pediatric ophthalmologist appointment down in Tribeca that we could not reschedule. I didn't want to take a sick baby on the subway, so we all piled into the car. While Teeny and I were seeing the doctor, Thora took a badly needed nap and Johnny sat in the car with her, double parked, sipping coffee and reading a book.

I made this appointment for Teeny because I noticed that most other kids I've come across with cerebellar issues have poor vision. Many are farsighted and wear glasses before their first birthday. Others have had nystagmus or strabismus surgery in infancy. I didn't know what these things were two months ago, but now I wanted to rule them out. Teeny has big beautiful eyes that follow you wherever you go, and I didn't think there was anything wrong with them but I wanted to be sure.

A lot of people have asked me how an ophthalmologist can evaluate a baby's vision, so I will tell you. First, we talked about her diagnosis. He seemed completely unshocked, nodding his head as I related my concerns, which made me wonder about the patients he normally sees. Then he got to work.

He did three main things. One, he dimmed the lights and got out all kinds of toys with bright and flashing lights. He shook them, waved them up and down and from side to side and made noise with them to see if her eyes followed them. There were toys stationed in corners of the room, for example, a duck was perched up high on a shelf and it flapped its wings and squawked when the assistant flipped a switch. When Teeny looked up or over at any of these things, the doctor peered into her eyes with his little instrument, which had its own lights and Sesame Street stickers on it, so she wasn't bothered. Then he put drops in her eyes to dilate her pupils. She didn't love this part, so I nursed her while we waited a few minutes for it to take effect. Then another assistant used a hand-held version of the same machine that my eye doctor uses on mine to get a baseline assessment of her vision. As it zeroed in and made weird noises, the assistant sang Twinkle Twinkle Little Star and made twinkling stars with her hand. I'd say Teeny barely noticed the big metal Thing in her face. And finally, the doctor used the same toys he used at the beginning to have her look at him while he tested various lenses in front of each eye. Then he smiled and looked at me. "Perfect!" he said. "She's got perfect vision, and beautiful eyes." He paused. "A little therapy, and I betcha she'll be fine overall." I wasn't as optimistic, so I raced home and posted to the group about what the doctor said. Lots of parents reassured me right away. "I'd say you're in the clear," wrote one. When I saw that, I breathed a little more easily. I usually do trust doctors, but I sometimes believe moms a little bit more.

On Tuesday, I got a very exciting email. A week or so earlier, I'd sent a copy of Teeny's MRI images to a high school classmate of mine who is a pediatric neurosurgeon. I didn't want to bother him because I knew she was not a likely surgical candidate, but as it turns out, his mom and my aunt are best pals, so I was getting lots of pressure to reach out. I'm so glad I did, because he wrote me saying he presented her images at a departmental conference and they caught the eye of some experts. He connected me with a colleague of his who sent the images to a brain geneticist on the other side of the country who hypothesized excitedly that it could be some kind of genetic thing related to several specific proteins that he wanted to test for -- all WAY above my head. The possible diagnosis he cited is not even Google-able. I read the email chain a hundred times and looked up every word I didn't understand and I still have no idea what any of it could mean. But when I heard back from the colleague, he said he'd like to explore this on a research basis and that it could take a long time to figure out but that if anyone could, it's this fellow he knows on the west coast. I felt encouraged that someone was interested enough to really try to pinpoint what happened to her and what we can do for her. So we'll see what comes of that.

A day later, we had an appointment with a developmental pediatrician. This was approved and paid for by Early Intervention, but I didn't really know exactly what a developmental pediatrician was or what would happen when we saw her, so I looked it up. A developmental pediatrician is the kind of doctor who helps you determine a diagnosis of a developmental disability or test for specific developmental concerns. This doctor had a very strong reputation so I was glad to be seeing her, but we already had a working diagnosis, Congenital Anomaly of the Brain; or more specifically, cerebellar hypoplasia. So she and her team of pediatric residents were going to do an evaluation to test Teeny's cognitive abilities and to see if she qualified for Special Instruction.

I worried because by Wednesday morning Teeny was really sick with exactly what Bee had. I wasn't sure she would be at her best for an evaluation and I was even less sure that the doctor would be thrilled to have a sick and feverish baby in her office. But I called first thing in the morning to let then know what was happening, and no one called back to cancel or reschedule so we went.

I was nervous. I had a little lump in my throat as we waited because this was it, the first evaluation of Teeny's cognitive ability capacity since the MRI. We had one before then, and she tested within the average range, but I needed reassurance. People tend not to believe the severity of Teeny's diagnosis because she doesn't "look" it. She has no facial characteristic that you might think someone with a brain injury would have. She doesn't make weird sounds or do anything out of the ordinary except look wobbly and unsteady when she moves. So I feared that the first evaluator, who saw her long before we got any kind of diagnosis, might have gone easy on her or not looked for specific things that she might have, had she known what she was really dealing with.

More than anything else, I want Teeny to be okay cognitively. I know I don't get to decide what happens to her, I know it's beyond my control. But I can't help trying to make little deals with this demon Cerebellar Hypoplasia in my head. I try to negotiate: "Fine, if she has to walk with a walker or with braces, fine fine. If she needs help learning, fine. If she doesn't become an Olympic gymnast or a brain surgeon, fine. But please, please don't let her be..." and I can't finish the sentence, even in my head.  "You know. Please don't let her be that word that we can't say anymore. Please don't let her be that."

When we were called, we were led to a playroom that looked like all the other evaluation rooms we've seen so far. There was a little table and a few little chairs in the center and toys scattered around the periphery. The doctor, a thin, professionally dressed woman with a big diamond ring and a crisp British accent opened a closet door and got out the same rainbow colored mat we have at home and tossed a few toys on it. Teeny was tired but interested. I sat on the mat with her to wipe her horribly runny nose, one hand on her back to keep her from falling over. There were two pediatric residents managing the paperwork, sitting awkwardly in two of the little chairs, clipboards balanced in their laps. We all chatted briefly about her diagnosis and medical history. I babbled on about the research I've been doing and about the various experts I've been in contact with and I asked her what she knew about cerebellar hypoplasia. She said very quickly that she was sure I knew more than she did specifically, but she talked about some other patients she'd evaluated and colleagues of hers we might see. Then she took off her heels and squatted down next to Teeny and started the evaluation. She picked up a plastic toy with buttons in the shapes of farm animals. Every button played a different song. She pressed the cow and it played Twinkle Twinkle Little Star. She pressed the duck, and it played Old MacDonald. She held it out to Teeny, who poked a finger at the cow, and after a moment, at the duck. "Good job, Teeny!" the doctor exclaimed, and took the toy away. She picked up a baby doll and a small plastic bottle and offered them to my daughter, who took the bottle and held it to her own mouth right away. A few seconds later she took the baby doll into her arms and, to my amazement because she's never played with a baby doll before, she held the doll to her chest and offered it the bottle. A collective Awwww rose up from all the adults in the room, who, for all their impressive specialties, board certifications and letters after their names, were still not impervious to the cuteness and charm of my little girl. The doctor leaned in to one of the residents and murmured, "Give her full credit for that one."

And so it went, for nearly an hour and a half. She pulled out picture books and asked Teeny to point to specific things: cat, apple, car, baby. She gave her a toy and asked for it back. "Give me?" she asked, again and again. Teeny looked at her blankly. She procured a set of plastic cups and offered them to my girl, who grabbed them and happily banged them together. The doctor was trying to get her to transfer them from one hand to the other, which I knew she could do easily, but she was much more interested in making noise so she kept banging them together and squealing with delight. After a moment, she dropped one and transferred the other from one hand to the other. "You did it!" cried the doctor, who suddenly seemed as invested as I was in seeing Teeny succeed. She handed her a few small objects - Lego pieces, a plastic coin - and asked her to put them in the cup. "Put in?" she asked, in her sharp British accent. Teeny has been practicing this one at home every day but with bigger toys and bigger containers, so she had trouble at first, but she kept at it until she got them all in. "Look how hard she's trying!" the doctor said, and I heard the admiration in her voice. "She just doesn't give up, does she?" Nope, she sure doesn't.

As we went through the rest of the test, the doctor asked me a zillion questions about what Teeny can and can't do. She asked some of the same questions everyone asks: Does she gag when she eats? (no) Does she fuss in the bath? (no) When did you first notice something amiss? (right away) Any documented history of learning disabilities? (no) Can she play peekaboo? (yes) Feed herself with her hands? (yes) With a pincer grasp? (sort of) With a spoon? (no) Does she wave hello and goodbye? (yes) Nod her head yes? (sometimes) Do any sign language? (yes) Look around for her sister when you say "Where's Bee?" (no) Have any words? (yes) Say Mama? (no) She can't scribble, can she? (Oh, yes, she can!) And so on.

Then she put Teeny on her back and started stretching and pulling her to evaluate her tone. The cognitive part of the test was over, and my baby was exhausted. After two minutes of being handled, she began to protest. I took her in my arms and offered her milk; she was asleep in thirty seconds.

I wasn't going to waste any time though, so I pulled out my notebook and asked some questions of my own. I asked first about her overall cognitive ability, and the doctor said that even without adding up the scores of the tests we'd just done, she was confident that Teeny was normal and that her tests would all be within normal limits. I thought about the bargain I'd been trying to strike with the demon in my head and I needed more clarification. I had to know. So I said "You're telling me then, that she isn't, you know... retarded?" She looked at me quickly and said "Well we don't say that anymore, at least not clinically." And then under her breath she added, "Though we do still say it colloquially."

I waited.

"No," she said, "I definitely don't see any signs of that in Teeny."

She did say that her scores and her cognitive ability itself would be affected by her significant motor delays. For example, she said, you can tell she knows that she's supposed to stack these blocks, and she wants to do it, but she can't physically. This is very frustrating for Teeny and the longer her motor skills are behind, the more likely her cognitive development will be slowed too. We had heard the same thing from the psychologist who did her first developmental evaluation, so I wasn't surprised. For this reason, the doctor continued, she would be recommending Special Instruction. Not because she needed it developmentally, but because it could only help her, based on her medical diagnosis. "But EI will see from the scores that she doesn't really need it," she warned, "so you may not get much." This was the same warning we got from the speech evaluator, who recommended speech therapy on the same basis. I nodded, understanding that this was the best kind of bad news a mom can get, and said we'd just see what the EIOD thought.

Then I asked about autism spectrum disorders since I know they are highly associated with cerebellar hypoplasia. I barely got the question out when she cut me off. "No." She said. "But wait, I've read that--" "No!" She said again. "That is one thing you do not have to worry about." And she listed ten things about Teeny that proved to her that she was absolutely not on the spectrum. "But I read that you can't even tell until kids are two or three sometimes--" I started again and again she cut me off. "No. Just, no." I smiled, totally relieved, and went on to my next question. She sat on a tiny chair, one leg crossed over the other, and listened. She answered everything patiently, gave me her medical opinions, talked about other patients she'd seen, referred me to other experts, and was generally very absorbed in what we were doing until all of a sudden something somewhere beeped and there was a rush of iPhones and watches and shuffling of papers and they were late for their next meeting. I collected all Teeny's wadded up tissues and our bags and that was that.

I felt great after that. Christmas had come early for me. My daughter had a chance at a regular life. She was cognitively normal. The rest we could handle. I did a happy dance and told everyone who would listen. I even lifted my do-not-discuss-at-work ban. I got more and more focused on her therapies and getting her all the services we could cram into her increasingly busy schedule. But Teeny got sicker and sicker. This was the first week of her increased PT and OT and I hated to have her miss a single session, especially after hearing again that getting her motor skills up to where they should be is the best way to help her cognitively. So I tried to push her through her therapies, but she just wasn't having it. During one PT session, she wailed the entire time. The PT looked at me helplessly and said, "I think she's had enough." I glanced at the clock and opened my mouth to protest. After all, we had ten minutes left! But Johnny took me aside gently and said, "Aimee, look at her. We have to stop." I looked at her. The poor girl had glassy, bloodshot eyes and a runny nose. in the past 48 hours, her fever had been up and down. Her voice was hoarse from coughing and more than once she'd coughed until she vomited. He was right. I cancelled her sessions for the rest of the week. Johnny propped her up on her boppy in front of Sesame Street and finally, she slept.



And slept.



On Thursday she was perkier. I pronounced Bee well enough to go to school and Teeny still unable to do her therapies but well enough to attend Bee's classroom's holiday event. I had a meeting I couldn't reschedule, so I had to miss it, but I think they had a lot of fun.






 

By Friday, it was my turn to be sick. And once the symptoms hit me full-force, I felt terribly guilty for pushing my baby to perform. This cold was a bad one, and Teeny definitely had it worse than Bee or me. But sick or otherwise, I'm still smiling today. Thanksgiving, usually my favorite holiday, was marred by the news of the diagnosis, and I was sullen and resentful and not in the least big thankful. Now it's settled in somewhat and while I'd still trade it away in a heartbeat, I am getting better at taking things one day at a time, preparing for the worst but hoping for the best. And all the while, knowing that Teeny's running this whole thing. The developmental pediatrician said that determination is a cognitive skill. So if that's true, then really, she's got a lot going for her. I think about this over and over. It's the one thing that every single therapist, doctor, counselor, nurse, friend and family member says about Teeny. She doesn't give up. She tries so hard. She's really so motivated.

So I am taking my cues from my daughter. Remembering that makes all that we're doing worth it, and there is still so much to be done. In the past two weeks we've found a speech therapist who will come to us at hours that work for Teeny's schedule, so even though the speech hasn't even been approved by Early Intervention yet, we'll be ready to go when it is. Now we're on the lookout for Special Instructors. Recently, Teeny and I have gone gluten-free to see if this helps her in any way. I've packaged up still more copies of the MRI images and now the ultrasound images from my pregnancy as well, to have them looked at by the many experts helping us. The pile of books and articles by the bed is growing and our savings is dwindling. My spreadsheet has more tabs. We made more appointments: next we're seeing a physiatrist and a geneticist. We rearranged our holiday travel so she would miss fewer therapy sessions, and our family understood. And every day we brush, we swing, we open our door to one therapist after another. It doesn't slow down. But we do it. Wouldn't you?





So as we wrap up this terrible, awful, no good year, we're feeling cautiously optimistic. And after so much sadness, Teeny, Bee, Johnny and I are ready for Christmas tomorrow. Despite all we endured in the past few months, we enjoyed Hanukkah and have been busy since, trimming our tree, listening to Christmas music on the radio, wrapping gifts, sending cards, wearing fuzzy socks, and shopping for (gluten free, vegan, organic) ingredients for sugar cookies and other holiday goodies. We're thankful to all of our wonderful friends and family who have been there for us even when we weren't up to talking. We love you and we wish you a wonderful 2013.

Life Goes On

Almost two weeks have passed since we got the diagnosis. The range of feelings both Johnny and I experienced was a little like cramming all of puberty and adolescence into ten or eleven days. I can't speak for my husband, but as for me, I won't lie to you. The way I felt last week was second only to me at fourteen, miserable, suicidal, lying on the floor of my room in the dark, blaring Pink Floyd's The Wall or the Cure's Pornography, easily two of the most gut- and heart-wrenchingly, agonizingly hopeless records ever written, absolutely certain that the best thing I could do for myself and for the rest of humanity was to end my life. This is the stuff of Sylvia Plath. It's stuff I really never wanted to experience again.

Years ago, I was in a group therapy for a short period of time. We were learning Dialectical Behavior Therapy, or DBT. In one exercise, we were asked to describe the pain we lived with. For me, the word I settled on after much deliberation, was anguish. It still moves me to tears when I think back on that very sad and dark part of my life. I was so unhappy for so long. Anguish is painful, bleak, full of shame and misery and hopelessness. It's rough. I was really hurting.

Those of you who knew me then know that I can really do miserable. Back then it was somewhat comforting, like an old security blanket. But you know, I had no good reason for being so unhappy. I had a home, I had school, a job. Family, friends. Resources, opportunities. I wanted for nothing. I just hated everything. Sadly, the security blanket of miserable gave me a sense of belonging, if you can believe that. It was my identity for far too long. But I've long since shaken that off and developed a more productive sense of purpose and a true love of life. Now, at 39 and with a perfectly good reason to be unhappy, it feels self-indulgent. I'm not going to tell you what Johnny and I talked about. I'm not going to repeat the questions I asked, the what-ifs, the fears I spoke aloud. These are things I never wanted to say and never will say again. This is not radical acceptance. I don't want this and I'm pissed as hell that it landed on us. I am furious that Teeny's life will be affected. I am not done grieving the loss of the parenthood I wanted, and the family I expected. But I am not wasting any more time with what-ifs. As someone I loved many years ago once wrote to me, "That's not my program anymore."  After a few days of tears, wallowing in self-pity, and the kinds of conversations parents should never have to have about their children, after a Thanksgiving in which I felt really un-fucking-thankful for this crappy hand we were just dealt, I realized that I was dwelling on stuff that might or might never happen, and I was forgetting the kid in front of me, who was here now, and needed me now. I realized that I needed to focus not so much on the things Teeny may never do but rather the things she's already doing. My heart swelled again with love for this beautiful girl who is a lot more than just a diagnosis, and I remembered my favorite quote, by George Bernard Shaw, that I saw for the first time pinned to the wall in a classroom in the school I used to teach at: 

"This is the true joy in life, being used for a purpose recognized by yourself as a mighty one. Being a force of Nature instead of a feverish, selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy. I am of the opinion that my life belongs to the whole community and as long as I live it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die. For the harder I work the more I live. I rejoice in life for its own sake. Life is no brief candle to me. It's a sort of splendid torch which I've got to hold up for the moment and I want to make it burn as brightly as possible before handing on to future generations."

This is the way I live, and it's the way I love. Remembering this, I emerged de profundis, anew. Here's why:

Teeny is there. She's present. That MRI report is terrifying, horrible, scary. But this little girl has shown me a thousand times in the past week alone that she is going to do her best to beat this thing.

What I've learned is that nobody really knows what's going to happen to Teeny. The neurologist would not commit to a prognosis regarding her cognitive abilities. Basically he and my radiologist friend agreed that her success will be largely dependent on her environment - her therapy and her family -- and her own sense of determination. The neurologist told us not to come back for at least three months because there was nothing more he could do until he got a sense of how well she was responding to her services.

So I wanted to make sure she had access to every single service that might help. I did a bunch of research right away. I ordered books like What To Do For Your Brain Injured Child and The Woman Who Changed Her Brain and some others. I found a place in PA that offers week-long seminars for parents of brain injured children that we can't afford to attend. I've been in touch with a neurologist whose lab does extensive research on the cerebellum. I've printed out every scientific article and study I can find on cerebellar function and dysfunction -- and read some of them. I scrutinized Teeny's MRI report and looked up every word I didn't understand. I felt like I was taking a crash course in neurology as there were more words in the report that I didn't understand than words I did, but now I can read it fairly fluently and even I found a mistake in it that up until this point no one had caught! (Now I'm working with the neurologist to have it corrected.) I'm reading as much as I can about neuroplasticity and have learned that even the cerebellum can benefit from it. I'm reading about various therapies that claim to be able to heal brain injuries. I keep reminding myself about the study I read in which rats were given a lot of stimulation in their environment - toys, mazes, light, etc., and the control rats got no stimulation at all. When they were euthanized their brains were weighed and the stimulated rats' brains weighed significantly more than the control rats' brains. People are coming out of the woodwork to share their miraculous neuroplasticity stories. In the introduction of The Woman Who Changed Her Brain, I read about the single thing that people who overcame brain injuries and deficiencies had in common.  "Our shared determination... was actually a shared strength in frontal lobe functioning, that part of the brain critical for planning and seeking solutions. A hallmark of good functioing in this region of the brain is driven determination in pursuit of a goal." Determination is one thing that Johnny and I both have in spades, and it seems that while Teeny may have gotten the shaft the day they were handing out cerebellums (cerebella?), she was definitely at the head of the line to get her frontal lobe, whatever that is!

I scrolled farther and farther down in the online support groups I found, reading back over months of posts. I read questions, answers and comments by parents of kids with CH who have varying degrees of recovery. It seems that cerebellar hypoplasia is often accompanied by a whole range of other issues. Fortunately, Teeny appears to have none of them (yet). Among the diagnosed, some never walk or talk. Some can't feed themselves and must wear backpacks to hold (and hide) their feeding tubes. Some have had major eye surgery as babies. Many are autistic. Yet others have learned to walk and talk, have graduated high school and college, have jobs and learned to drive. There's one fellow in particular on there who has cerebellar agenesis (i.e., he was born with no cerebellum whatsoever) who has achieved all of those things. He's incredible, as are the other adults and young adults who post in this group. Their grammar and spelling: perfect. Their awareness of their challenges: dead on. I pored over pictures and videos posted to the group. Do the kids look sick? Can you tell? I got the names of institutes, schools, doctors, therapies, etc., that have helped other CH children. And I created a spreadsheet on my Google drive with all this information and more, and I go through it a little at a time.

Of course I'm getting her checked out for everything I can think of that can accompany CH - she's got appointments coming up with a geneticist and a pediatric ophthalmologist. We are waiting for clearance to see EI's developmental pediatrician. I submitted a request for a speech evaluation, for nutrition services. And so on. You should see my spreadsheet. It's a work of art.

The hardest part so far is what I'm working on now: getting her a Medicaid waiver. Apparently even though we make too much money to qualify for Medicaid, certain disabilities entitle people to it anyway, and once they get it, it covers medical equipment, home modifications, some schooling and programming, additional health care not covered by private insurance, even respite care. But every agency I've come across has a very long waiting list. But we're on them now, and I haven't given up yet.

And life goes on. Bee is having trouble sleeping through the night, which means no one in our house sleeps through the night. Johnny and I have been taking turns sleeping on the floor next to her, which really stinks. Our finances are tighter than ever so we're looking at a pretty bleak holiday season. One of our cats is sick and we can't figure out what's going on. My in-laws experienced significant damage to their home in Hurricane Sandy and we can't help them. Work is very hectic as I prepare to execute a strategic plan that will take my team in a radically different direction. I can barely find the time to get to my own PT appointments, set up through no-fault insurance to ease the neck and shoulder pain I've had since our car accident this summer. Of course as soon as I made it to my first appointment and relaxed into the heating pads nearly four months after the accident, the insurance not-so-kindly set up a series of appointments for me with their own orthopedist, probably thinking they smelled a rat. No rat here -- just someone who took three months to get to an appointment because of all the other crap that's going on. And oh yeah-- I'm still in school. Life is big. Really big. And Starbucks poisoned me again today with a full caf venti Americano instead of decaf, so while I'm grateful that it gave me the energy to stay up and write this entire entry in one sitting, tomorrow is going to be a tough day.

In the meantime, we've had a number of breakthrough moments. Here's a good one. In the last few days, I've taught myself a handful of signs. I read that this could help Teeny communicate, since passive and active speech could be separate and distinct challenges for her. But I felt silly, signing "Mama" and "Daddy" over and over with my thumb on my face and my four fingers extended like a turkey. Harder was the sign for sister - could I really expect her to copy that? I was doubtful as I signed "diaper" and "milk". But then this weekend over dinner, when I said and signed "more" and every time I did, I offered her another bite of tofu or brown rice pasta. Suddenly she brought her hands together. She watched me intently, and copied what I did. She had trouble pointing her fingers together instead of bringing her palms together in a clap, but she got it. And although she can feed herself perfectly well, she opened her mouth and waited for more. Success! I felt not unlike Anne Sullivan, Helen Keller's teacher, when she finally made her understand that the fingering into one palm and the cool sensation she felt in the other meant water. And I wasted no time in stuffing more pieces of tofu in that little open mouth. She's the healthiest eater in the family now. Too young to be picky, she'll try anything, and I take full advantage and feed her lots of "brain foods," lots of omega 3s, proteins, vitamin Bs, antioxidants. And I nurse her as much as I can. Because I'm at work during the day, this means I nurse all night. She wakes up 3 or more times at night, wanting milk. Most nights I end up bringing her into bed with me because after the third or fourth time I'm too tired to sit in the glider with her. But she is finally building tone in her arms so she hugs and clings to me now, and cuddles when we co-sleep. I know my breast milk is exactly what she needs to get proper nutrition, and I can't help but think that these opportunities for quiet mama snuggle time are helpful for her development too.

She started PT and OT last week. After the second PT session, the therapist said "Oh yeah. She's gonna walk."



In the first OT session, that therapist told me to look into Special Instruction for her. My heart sank, but I added it to the spreadsheet. Then after the second session, she changed her mind and said she probably wouldn't qualify for it. (We're collecting documentation for it anyway.) "I think she's okay cognitively," she said. "And," she added, "she's really very cute, too." She brings toys with her, and all kinds of tools and practical suggestions to make things easier for us at home.

In the past week, Teeny has gotten two teeth and seems to be getting another still. Both Johnny and my mother insist she's gotten much heavier. Always very underweight and small for her age, at 14 months old she wears size 12 -18 months in some clothes, 18 - 24 in others. She's sitting by herself and is working up to a high kneel. Yesterday the OT talked about us setting up a place for her to pull herself up to a stand safely, believing fully that it's right around the corner. She's curious and exploratory. She putters around the apartment and we find her, much as we did her sister when she was eight or nine months old, in the cat food, under the dining room table, rooting around in a basket of toys, pulling herself up by holding onto a chair or onto my leg. She made her way into the kitchen last night when I was cooking dinner and discovered Bee's animal magnets on the fridge. I have a whole series of adorable pictures of that and of her pulling out every single tissue in an entire box, but alas I have no storage left for pictures on this blog!

She now loves the iPad and fights Bee for it. She points at Grover in the The Monster at the End of This Book app, and screeches with delight at the many toddler apps that Bee played with and has since outgrown. Best of all, she now copies her sister. Obsessed with learning to write, Bee makes "shopping lists" every day. Teeny made one too:

And she is trying her darndest to talk. Her first and clearest word is "up." She also definitely says "da-da" -- meaningfully now -- referring to both Johnny and me. And she says, more or less clearly, "cat."

I reconnected with an old, old friend recently. Her son has special needs as well, and I sat down with her to talk about her experiences and to learn more about how the system works in New York. We talked for two and a half hours. As we put our coats on and headed out into the first really cold day of the year, she stopped me. "What are you and Johnny doing to take care of yourselves?" I had to think about that. Johnny was home now, I said, playing Zelda on his WiiU. He needed a break this afternoon so I brought the girls to my mom's. "But what about you?" she asked again. I didn't have a great answer.

But that's not the end of that story. I don't want to talk about it at work. To be clear, I don't mind talking about it with my coworkers, but when I'm at work, I want to focus on work. So I get to escape to my beloved job most days and not talk about cerebellar hypoplasia at all with anyone. I need that. One of my BFFs took me out for a mani-pedi today. I loved the hour of pampering, just sitting next to her and catching up like normal people. One colleague offered to have our apartment cleaned, and another sent me a gift certificate for a pedicure. Relatives who live eight hours away made time in their holiday schedule to visit and love on the girls. On Sunday morning I went for the first run I've gone on in two weeks, cheered on my my new virtual running pal. Yesterday I went to sleep at 8 pm. My mom has come through numerous times to give us badly needed breaks, or to be on Bee duty while we take Teeny to yet another scary appointment. Johnny gives me impromptu massages and takes great pains to keep the house clean. Tonight he cooked dinner while I put Teeny to bed. Friends, family and colleagues have reached out to offer to help in whatever ways they can, and to let me know they read the blog and that they care. Some of you I haven't even had a chance to get back to, but I will. I am very fortunate to have the people in my life that I do. Seriously, people. I love you. You know who you are.

Suddenly it feels like we have two kids in the house again. Two active, bright and healthy kids, and two bright-eyed and involved parents. This is the way it was supposed to be. So what if we have a long road ahead. It's not, as Johnny and I like to joke, all puppies and rainbows. Nothing's easy in life, and Johnny and I both have overcome huge obstacles to be the parents -- hell, to be the people -- we are today, so we know this first hand. I know there are no simple answers to Teeny's problems. In fact, for now there are no answers at all, and that's the hardest part. But even though we didn't sign up for this and we'd trade it away in a heartbeat, we're up for this challenge. We are determined. And clearly, so is she.