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.

How Teeny Learned to Crawl Sort Of, or, Navigating the EarlyIntervention System in New York City

Here is the rest of the blog entry that no mother wants to write. It's the story of How Teeny Learned to Crawl Sort Of, or, Navigating the Early Intervention System in New York City.

So there's good news and bad news.

The good news is that I am a mama who pays attention. Diligence and determination are my middle names. If you've read previous blog entries, you will know that I knew something was a little different about Teeny from the moment she was born. So small, so fragile, so sleepy. By the time she was five months old I was convinced. She wasn't rolling over and tummy time still made her miserable. By six months, I was telling her pediatrician that she was slow to meet milestones and she told me that she was fine, just lazy. By ten months I couldn't take it anymore and I turned a routine pediatrician visit for Bee into a referral session for Teeny. If you missed it the first time, you can read more HERE and HERE.

The bad news is that there's more news. We started Teeny at private physical therapy two days a week to give her issues a kick in the pants while we went through the evaluation process to see what we were really facing and what services we would qualify for. The first time we schlepped into Times Square early one weekday morning with both kids, navigating the stroller around the suits, the tourists and the horrible Elmo and Mickey Mouse impostors, I said a silent thank you to the gods of people with small children that the Disney Store and Toys R Us didn't open until 10, so Bee could not coerce us into a side trip (this time). We did however get suckered into tipping one of SIX Elmos for these ridiculous photos:

Nervously, I discussed the issues with the PT and he got to work. And he billed us, because our insurance company wouldn't touch this with a ten foot pole. I was grateful that I am a worrywart and keep an ample medical flexible spending account for such unplanned purposes. Teeny's physical therapy is worth it, and this physical therapist is a good guy. He works her hard but makes it look like they're playing. Convinced this is just a "minor delay," he has been our voice of optimism throughout this whole process, coaching me as much as he's coaching Teeny. I hope he's right.

The evaluators, on the other hand, seem like harbingers of doom and gloom. It's their job to tell it like it is, in no uncertain circumstances. So while it's such a relief to start getting some answers, I don't really like these answers. And because they can't technically diagnose, they succeed fabulously at scaring the crap out of nervous moms and dads with their vague "red flags" and "we generally like to see X, but with Teeny I'm concerned because instead I'm seeing Y," and so on, meaning of course that every evaluation leads to more questions and further evaluation.

The day before Teeny's first evaluation, our service coordinator, K, came to meet me at work. She was very kind and friendly, but only confused and scared me more when she handed me a pile of papers to review and sign. She talked about the process briefly, the goal of which was to determine whether Teeny would qualify for state funded services. And two minutes later, she was gone. 

The next day, we began with the developmental evaluation. We arrived at the agency's offices a good fifteen minutes early. We met K again, and H, the woman who helped me sort out the many different agencies who work with EI and secure my appointments. L was the psychologist evaluating Teeny. Whoa, I can not even believe I just wrote that. the psychologist evaluating Teeny. My daughter is a baby. A baby! She was one year and one day old when I put her down on a mat on the floor of Evaluation Room 2 and let someone evaluate her. L was an older lady, very sweet and enthusiastic. K and H both stayed for the evaluation, loving on Teeny, applauding her every move even as L offered a running commentary about what she saw. With Teeny in table-top: "See her hands? The way they are splayed out instead of facing forward when she's on all fours indicates that she doesn't have the strength to support her upper body enough to crawl. As long as her hands do this, she will always pitch forward." With Teeny in her lap: "See how she can't even hold herself up to a sit when you put her there? This is a very significant delay." With Teeny on her back, holding a toy in each hand and banging them together. "See how she holds something in each hand? This is very sophisticated and age appropriate." With Teeny kicking both legs out and waving her hands wildly: "This is frustration. Cognitively she is ready to move. If she could crawl, she'd be in China by now. She wants to play, but she can't. Her mind is ready to do new things but her body can't do them, and she will grow more and more frustrated if she doesn't get help soon." And so on, jotting down notes all the while, talking about her deficiencies in both gross and fine motor skills, and recommending further evaluations in PT and OT.

In summary? "Cognitively, Teeny is a smart and alert baby. She is interactive and social. Physically, she has the development of a 5 month old baby. Her mind is ready for walking, but her body is not." She said she would make a strong recommendation that Teeny be offered both PT and OT, but she could not be sure if she would qualify. I was hardly listening at that point, stuck on she has the physical development of a five month old baby. Even if she was right, it was hard to hear her talk about my baby this way. Still, it's better to hear it than not, and it was reassuring to have my suspicions validated. When we were through, I left Teeny with them and ran to the ladies' to pee and wipe away a tear. I wasn't sure why I was crying - because I got bad news or because the news was, for bad news, actually very good. When I came back, K, H and L had taken off their evaluator hats and were just three women loving on a baby. They were cooing at her and holding her up to a mirror, where her expression turned from concerned ("she's wondering where her mama went!") and broke into a toothy grin. She raised a hand and waggled it at her reflection and the three ladies gasped. "She's waving! I didn't think she could do that! Smart baby."

And then it was on to the next evaluation.

PT was next. This therapist, A, came to our apartment. She was allergic to cats (boo) so I shut our two into the girls' room amidst meows of protest, and then we all hunkered down on the rainbow mat and got to work. She echoed many of L's comments as she pushed and pulled and contorted Teeny into and out of many different positions. She showed me exercises to do with her, asked about the PT she was currently receiving, suggested we see a pediatric neurologist, but then would not say why. "Just to confirm that it's not neurologic," she said. "Though there are a lot of good signs, I am seeing some red flags." Then she looked me in the eye and told me very sweetly that the papers she was filling out about my girl were going to look very drastic and harsh. Be prepared, she said, and don't take it personally. After all, at her age, there isn't much she should  be able to do, so she is being scored on three things. if she could crawl, and she's so close, the scores would rise dramatically. Still, she'll qualify, and you should fight for as many sessions a week as you can. I recommend PT at least four times a week and OT at least twice. And she packed up her bags and left before I could take a single picture.

Less than a week later, we had the OT evaluation. This one was back in Evaluation Room 2, and this time my mom took Bee, so Johnny was with Teeny and me. Our service coordinator and another representative of the agency who were with us for the developmental evaluation both seemed shocked at how much Teeny had progressed in the week since. She was bunny hopping all over the place and able to work her arms more independently than ever before. This therapist echoed the PT's concerns that there may be a neurological issue.

The evaluators were all very kind. They genuinely seemed to enjoy working with Teeny and were so celebratory of her little victories that I am starting to feel encouraged and hopeful. And let me tell you, every day I love this kid more. As she gains more physical strength, she seems to grow cognitively as well. During the first evaluation I said she doesn't know ma-ma-ma means mama or that mama means me. She doesn't wave. She doesn't understand "hands up" when I'm putting the tray on the high chair. She can't move herself around at all. All of this has changed. In every evaluation, Johnny and I found ourselves exclaiming, "This is new! She couldn't do this last week!"

In the first eleven months of her life, Teeny did very little. In the past six or seven weeks, she is doing SO many new things. She rolls over in both directions and has essentially learned to crawl (bunny-hop style).

It's a work-around, but it gets her where she needs to go (and it's cute!).

Somewhere in there, Teeny had her first birthday. It fell right around the time I was feeling overwhelmed and afraid and really not like celebrating. Did I really want to invite every other parent of young children I knew over to look at my baby who was having such trouble? I was tempted to cancel all the plans lest people look at Teeny like a freak, or talk to me in hushed tones, asking in a I'm-glad-this-is-your-kid-not-mine voice about how she's doing. But then I said screw it. It's her first birthday and I want her to spend it with the people who love her. And she had a blast. Our friends and family are loving and respectful, concerned and caring. And if our baby ends up riding the short bus like the kids in this amazing book, then that's what we will have to deal with. But we'll take that one birthday at a time.

Most recently, she's shown us that she can push herself back from table-top into a sit, using her arms to steady herself. She has developed a voracious appetite and can feed herself using a pincer grip (sometimes). She clearly knows and comprehends her name and a handful of words. She shakes her head no when she's done eating and plays peek-a-boo by covering her own eyes to engage you in the game. And when I came home from work one evening last week, she looked up at me from her usual spot on the rainbow mat, smiled and said "mama!" I picked her right up and she put her arms around my neck. I felt her holding on; another first. This weekend we visited family and she got to play with new people and new toys in a new place. She snatched Bee's balloons away from her and threw a fit when Bee tried to take them back, which made us realize that we have entered the stage of parenting kids very close in age where it's sometimes better to have two of everything. Sitting in the backyard, she was so curious that she couldn't help but stuff the colorful fall leaves in her mouth (with a handful of grass and dirt as well). She is really into wind-up toys: the noise, the movement, their small size and "grabbability" are all really perfect for her needs, so we're amassing quite a collection. She's becoming more and more expressive and opinionated, which I can only see as a good thing. In many ways she acts like a normal 13 month old.

All the same, we did take her to specialists to rule out medical issues. The orthopedist we saw essentially tossed us out of his office after five minutes, saying that he sees babies her age who can't even hold their heads up and that if she still can't walk at 18 months then he'd consider doing an x-ray of her hips. The neurologist was less reassuring. He believes that Teeny sustained some kind of injury or some other "static event" as he called it, during either pregnancy or childbirth, that is causing her brain to miscommunicate with her nerves. Fortunately, he does not believe here is any degenerative disease and he thinks that since she responds so well to therapy already, this could be fixable. He did recommend an MRI all the same, which I'm on the fence about and haven't yet scheduled, but probably will soon since our pediatrician chimed in to say it was a good idea.

Then all the evaluation reports came in. The agency we're working with sent us a copy of the 23-single-spaced-page document that they sent to the state. Of course I read every word. The evaluators had warned me that their observations and recommendations, along with Teeny's test scores, would look very harsh in black and white. They reassured me that they had to be harsh, because this was how they got the state's attention. Our goal, they reminded me, is to get them to cover the services Teeny needs to make progress. I get all that. But seeing the charts with percentages and rates and all these horrible adjectives describing my child made me furious and sad. I got defensive. In my head I said "But she's doing that now, and that and that!" I choked back tears and resolved to be brave and to remember that this is a snapshot of where Teeny was pre-PT, which is what we want the state to see. And I also have to realize that Teeny does have significant delays and that, despite her many achievements over the past two months, she still has a long road ahead of her.

So hopefully we'll get the help we need. Supposedly the state pays for services in the home, but the agency we've been working with doesn't have any therapists who work in our neighborhood, so we'll have to be contracted out. That creates a whole new set of worries for me. The meeting with the state to create our IFSP (Individualized Family Services Plan) is scheduled for tomorrow morning. Apparently, the purpose of the meeting is to write this document, which will serve as a contract for us with the state and will cover specific services that Teeny will be entitled to receive for six months. And six months from now, the document will be updated in another meeting. We can request additional services and increases/decreases to current services as we go. Ultimately, however, the decisions rest with the state. Our agency encouraged us to look as involved and committed as possible, to which I was like, "Duh!" I have no more details that that, so I don't quite know what we're walking into, but I have done all my homework (literally! I did a whole paper and presentation on Teeny last week for school!) and both Johnny and I are prepared to be the fierce advocates for our daughter that I know we can be. Look out, New York State!

Friends and family, keep your fingers crossed for Teeny! We'll let you know how it goes. 

Evaluations, evaluations

Right after I wrote that last blog post about Teeny's delayed milestones, I went into full-on panic mode. I barely slept for the next few nights, tossing and turning and fretting about my baby. But I also went into full-on action mode. The outpouring of love and support that came from so many of you inspired me. A lot of you have been there and know -- in one way or another -- something of what I'm going through. Thank you all.

So I got busy. I made a zillion phone calls. I talked to aquatic therapists, people who do pediatric Feldenkrais (though I'm still not really sure exactly what that is), EI specialists near and far, physical therapists, orthopedists, you name it. I googled, I called, I left messages. I made a list of all the calls I made with the dates and their info, just in case I had to start harassing people for calls back. But everyone called back right away. I was so overwhelmed. 

And slowly, a plan came together.

Not for the first time, my high school connection saved my ass. My friends, my colleagues, my family, all of you who reached out with your stories, your suggestions, your well wishes: I am so grateful to you. And to my classmates: I really freakin' love you people.

It started with my lovely high school friend M, who does pediatric physical therapy. Thanks to modern technology, the fact that she lives in San Diego didn't slow us down a bit. I poured my heart out to her one late night via Facebook IM, and she asked me one question after the next to try to get at the root of the problem. She generously offered to do a Skype or Face Time session with Teeny and me to see for herself what was going on. Two days later we did that, and she gave us some suggestions for exercises we could do until Teeny's in-person evaluations. In the meantime, I was trying to track down the right person at the EI agency everyone kept referring me to but I was landing at one person's voicemail after the next. I decided to make an appointment with a private physical therapist recommended by my pediatrician until I could figure the state stuff out, and I'm glad I did. 

As soon as I got that appointment squared away, another high school friend reached out and let me know she actually works with the agency I'd been trying so hard to reach. She put me directly in touch with the magician there who pulled some fast ones to help Teeny evade the three month wait list. Her evaluation is scheduled for September 25. (Thank you, A!!)

Her private physical therapy evaluation was last Wednesday morning. The therapist put her on her belly on a cute rainbow colored mat and talked to us as he pulled on her pelvis, pushed here, poked there. And Teeny was such a good sport! She tried so hard to reach the toys he spread out for her. She cooed happily when he placed her on the ball and on the peanut to try different movements. He stressed that she needed to learn how to push off from one side and demonstrated her core weakness by leaning her to one side... and letting her flop right over. Johnny practiced and I chased Teeny and then I practiced while Johnny chased Teeny. By the time the session was over, Teeny was frustrated and in tears. I was somewhat reassured, Johnny was saying "I want to buy that rainbow floor mat" and Teeny had kicked three exercise balls across the room, rearranged all the stools, thrown a six pound medicine ball in my lap, and licked and left fingerprint smudges all over two mirrors. While I filled out papers and made appointments (twice a week for the next month), she and Johnny jumped on the trampoline. This place was better than Gymboree!

Two seconds after we put Teeny back in the wrap, she was fast asleep. What a workout! We got strict orders to keep her on the floor as much as we can when we are home, no matter how much she hates it. (And hate it she does.) But we are diligent and on the bright side, she's so exhausted from it all that she's napping and sleeping better than ever.

So we will do our own private PT until the EI evaluation, and if she qualifies at that point then she will receive additional -- and free -- care until the age of three, and if not, then that is even better in my mind. The magician explained that she had to demonstrate a delay of a year or more, which seemed weird to me because her appointment is the day after her first birthday and she is clearly far more advanced than a newborn, but she explained that they sort of "pro-rate" the delay and that it would make sense to me as we got closer.

The physical therapist pronounced this a "minor issue" -- as if any issue with one's child could ever be minor -- and predicted that she would be crawling by the end of the month. For a second I was thinking that would be the end of that. "So you don't think she'll qualify, then?" I asked, in my mind already seeing her pulling herself up, standing, walking. "No," he said, bringing me right back down to reality with a crash. "I do think she will qualify actually. Crawling is just the first step." He pointed out the many strange things she does, like shaking both her hands at the same time, the way her legs are usually locked together, the way her one arm gets caught under her when she tries to roll over. All of these things, he said, are signs of a weak core. He explained why she falls on her face when she gets up on all fours and rocks back and forth. He explained why she can't yet take off, why it's useless to try to stand her up or focus on sitting. He also said that these problems show up very often, in his experience, in smaller babies. This to me was forgiveness. Of course I will never know why Teeny is so very much smaller than her sister, but at least I know this could likely be related to her size and not to, say, something I did wrong. He was also quick to note that she is very alert and verbal, and that in his opinion this was strictly a physical issue. This too reassured me. 

So we have a plan. Teeny starts school this week. I will take her there, three days a week. Many of those days, Johnny will take Teeny to her appointments. And at home, we're all doing our part. The Bumbo is in the trash, the Jumperoo is for sale cheap (anyone want it?) and we ordered the rainbow mat. We have a basket of hand toys in the living room and Teeny is an expert at fishing out different ones to entertain her sister while she gets extended tummy time. This kid is on her belly ALL. DAY. LONG. She's trying so hard and has made a ton of progress from when the video and photos below were taken. Already she's starting to separate her legs when she wiggles and kicks. This makes for easier diaper changing too! Already she is leaning forward in the high chair to grab the Cheerios I leave for her, a little further away each time. Already she can sit better in the bathtub. Already she is reaching with one hand instead of two, and trying to lean on one arm to push herself up. She's a good student and a tough cookie, just like her mama.