Appointments

Judgement Day for Stella’s Vision, Part 1: Ophthalmology’s View

Posted on by amberhj

Well, on Friday morning, Stella and I made our way to Seattle Children’s ophthalmology department for her yearly exam. The high-level stats for those keeping score and not wanting to sift through a lengthy post: Clear improvement of stereoscopy, virtually unchanged acuity (still one line different at 20/30 and 20/40, though one examiner saw equal acuity), half a diopter increase in the prescription in both eyes (still 1 diopter greater prescription for the left eye), still no crossing with her glasses, and if I want to, we can stop patching for at least a few months and see how she does. The improvement in 3D seems huge–her eyes are working together!

Here we are, at another crossroads, 14 months from Stella’s initial ophthalmology appointment wherein glasses were prescribed and followed quickly by patching, and nine-ish months from the start of vision therapy. (A typical course of vision therapy is nine to twelve months.) This was slated to be our last month of vision therapy (with regular six-months check-ins, and therapy brush-ups as necessary as Stella grows), but I’m interested in perhaps continuing for a couple months to solidify her gains and help that left eye catch up further. This will be decided in a couple weeks, during part two of Stella’s assessment, in the office of Dr. T, our developmental optometrist/vision therapy practitioner extraordinaire. I’m also eager to hear her take on the ophthalmologist’s findings and prescription.

I’d like to pause and explain why I take Stella to see both an ophthalmologist and a developmental optometrist. I’m a big proponent of vision therapy but I’d be a hypocrite if I dismissed ophthalmology, wouldn’t I? Ophthalmology may have its blind spots but I love getting another, more traditional point of view to consider so I have all the bases covered. It really, really bothers me when people write off vision therapy and developmental optometry based on ignorance and bias. When I bring it up in discussions with other parents on Little Four Eyes (mainly the Facebook discussion board), it usually gets ignored, though there are a few supportive voices. I’m learning to keep my thoughts here, in my own posts on the Little Four Eyes blog, or in welcoming vision-therapy-focused forums, so as not to seem intrusive with my rabid pro-vision therapy agenda. The horror! How controversial of me! (Insert eye roll here.) I don’t take it personally, and simply want to share what’s working for us with anyone who is unsatisfied with the status quo. Because if you look closely at the status quo, it kind of blows. Patching alone is proven less effective, typically with far less enduring results. It addresses the weak eye, but not binocularity, not the brain-eye connections involved with fusion. Amblyopia is a brain issue, not a simple eye problem. So I have created a more powerful, comprehensive plan for Stella than the traditional, ophthalmology-only path would provide. It’s not “either-or.” I’m not narrow-minded about it. Vision therapy has changed Stella’s life in multifaceted ways. Hence my enthusiasm.

Relatedly, I’m no longer so nauseatingly nervous about evaluations of Stella’s vision. It’s simple: I am confident that we have done our best. We’ve done everything possible. I know that Stella has benefited tremendously in measurable “data collection” sort of ways, and in less number-friendly ways that are clearly observable to the people who know and love her. Once again, I am reminded of her tube-feeding and weaning days. The medical system is letting down many tube-fed children, by not helping them wean when physically ready. Quality of life plummets as tube feeding continues. And why does it continue? Because dietitians and doctors are focused on numbers, rather than the child. They are concerned with milliliters of intake, weight and height percentiles, and not the child’s (or family’s) experience or enjoyment of life. They ignore the absence of the powerful but unmeasurable sensation of hunger, and hyper-focus on the measurable absence or perceived inadequacy of oral eating. What I love about vision therapy is its intrinsic holistic nature. How Dr. T held Stella’s hand and escorted her in, and noticed Stella’s toe-walking upon meeting her. How Bethanie notes even slight changes in Stella’s behavior or demeanor during exercises. How Stella’s vision is not evaluated in a vacuum, detached from her personhood and day-to-day reality. I feel that many areas of medicine, not just ophthalmology, could learn a great deal from this model of care.

Back to Children’s. About thirty-nine people were involved in the eye exam process, so I’m not sure I’ll recall exactly how it went down, but I’ll do my best. I’m going to go ahead and break it down because while mind-meltingly boring to many, it could be helpful to other parents and maybe a practitioner or two. I hope so.

Stella underwent a series of exams, then eye drops to dilate her eyes, then another series of exams. And woven in with the charts and cards and gazing at robotic puppies through many lenses was a series of contradictory statements and findings that I found confusing. At the same time, I did note an effort by the Children’s ophthalmology team to be respectful and thorough. All of that considered, I’m not sure we’ll be going back. I may consult with another ophthalmologist, to at least see how the experience and approach differs.

The initial examiner/assistant declared equal vision in Stella’s eyes. Yay! At 20/40. Boo? This supposedly age-appropriate acuity represented a decrease in her right eye, as it had been 20/30 in her previous ophthalmology exam. This person conducted both the first run at the standard eye chart testing, wherein Stella calls out the pictures/symbols she sees, and teller cards screening. During the latter, Stella saw the lines on all the cards presented, with both eyes! That has to mean something great, doesn’t it? Stella even pointed at the lines, instead of just looking at them. Seemed like she nailed it, but what do I know? Very little, it seems.

In the very exciting component of stereoscopy testing, as it reflects binocular vision or lack thereof, Stella showed real improvement! She not only tried to grasp the fly’s wings, as always, but she saw all three 3D characters on lines A, B, and C. Previously, she’d only indicated seeing the character pop out on line A! I felt like this was a big deal, but the moment felt anti-climactic for some reason. Maybe because there was no reaction from the woman doing the exam so there was no feedback in that moment about the improvement. I wanted a parade! At least some balloons and champagne. Step it up, Children’s!

Then the friendly orthoptist, like a breath of familiar fresh air, breezed in and gushed over Stella’s super adorableness. As I recall her doing at past appointments, she checked and re-checked Stella’s acuity–with particular interest this time, after seeing that it had supposedly changed. She decisively measured acuity of 20/30 for the right and 20/40 for the left, as in all prior ophthalmology appointments. Stella just couldn’t quite get the symbol presented for 20/30 with her left eye, but I really thought she whispered it once out of the three or so attempts. This woman was in tune with Stella’s history and status. She cheered the fact that Stella’s glasses still keep her eyes perfectly aligned at near and far. Because that is big and not to be overlooked! She put a negative lens in front of Stella’s glasses lenses, and discovered that while Stella did pretty well, her alignment did suffer a bit with the lower prescription. So I knew then that Stella’s prescription would probably not be decreasing. A bit disappointing, but not a big deal. In any case, it was reassuring to have someone be extra thoughtful and careful. As always, this orthoptist was delightful, and seemed genuinely invested and interested.

While I can’t guarantee the accuracy of my recollection of the order of events, I believe the eye drops were next. At bedtime the night before, and in the morning prior to our departure, I informed Stella about what was going to happen at the eye doctor–including the tingly eye drops. I explained roughly how and why events would unfold. Maybe that helped, because while she squirmed a bit, there was no yelling, no panic, no crying. Amazing. In short, Stella rocked the entire situation like a rock star who ROCKS. It impressed me, and everyone else, that she handled everything so calmly. Then she cruised through a 30-minute wait while half-watching Dora, impersonating a monkey while climbing chairs, and cracker snacking while making me nervous about insidious hospital germs being transferred into her mouth along with each bite.

Then the moment of truth, I thought. Nope! Another guy came in and looked in Stella’s eyes with that little handheld light, various lenses, and the contraption that looks like an old timey miner helmet combined with a futuristic mind reading device. At one point, he said, “Perfect!” What was perfect? Her posture? Her left cornea? This is how I think, people. Yet I held it in. I didn’t question him, mainly because Stella was shy and uneasy around the dude. So I was focused on her.

Okay, finally! The ophthalmologist came in, on a throne carried by an elephant, and warmly greeted us. She was accompanied by another dude. A student? A new resident? Not sure, but this was clearly a teaching situation. Stella eyed him with suspicion. The doctor casually and quickly delivered what could be considered an “intro,” saying that Stella looks to be doing quite well but needs a prescription change. Cool. I didn’t think too much of it as she proceeded to review the notes a bit and take her own measurements of Stella’s eyeballs. Not long into this consultation, another of the several small but confidence-undermining errors of the morning unfolded. She noted that Stella’s acuity was now equal at 20/40 in both eyes. I was all, “It is? Actually, I’ve heard both–that they’re equal and that they’re not.” So she looked closer at her folder and realized the mistake. This is the problem, I think, with Children’s “team medicine.” On one hand it may be reassuring to have many minds and specialists working on the issue of Stella’s vision, but as with her hospital stay at Children’s for GI and feeding issues, it seems to create confusion as information does not consistently track smoothly from one person to the next, to the next, to the next. Which makes me feel hyper-vigilant, as it’s up to me to prevent disaster. Fun!

This next bit almost seems impossible, so I’m thinking I must have actually misheard her. But here’s what I recall. On the topic of Stella’s unequal but close acuity, she said that everyone has a dominant eye, that many doctors don’t consider it actual amblyopia until there’s a two-line difference, and that Stella’s eyes seem to be working together well, but we may want to consider patching. Huh? We’ve been patching for at least nine months. I cut her off as she continued to say, “We are patching,  two hours a day.” She said something like, “Well, two to three hours of patching a day certainly won’t hurt…” I hope not, because you prescribed it, lady. I really am wondering if my hyper-vigilant self simply cut her off too soon and created this whole mess–so put a big mental asterisk there. She then said that it was up to me, but that we could take a break from patching and see where Stella’s acuity lands in four months, at her next appointment.

This when the doctor acknowledged my point of view as a parent. Nice! She said she knew that patching can be tough and that if it was agonizing, a break might be a really good thing for both of us. With a laugh, she said sometimes parents need patching breaks more than their kids, and besides, she was confident Stella would be just fine even if–worst case–her acuity went down slightly in that time, because Stella is still young and has more time for effective patching. I think I forced a laugh, but I really did like her nod to parental sanity. She also pointed out that if I thought it would be hard to get Stella patching again after the break, I could just continue our two-hour-a-day regimen and we’ll reassess next time. On the surface, these statements seemed 100% delightful. But then they sunk in and I saw their underbelly: a mentality that embraces years and years of unpleasant patching as the sole treatment for amblyopia.

When it comes to the actual examining and measuring, I get the sense that this doctor is very skilled. Efficient, calm, and precise. She asked Stella if she’d be willing to sit out in the waiting room and teach other kids how to cooperate during an exam. I was already very proud of Stella and this comment made me smile. Stella for the win!

At the very end of this saga of an appointment, I didn’t quite follow the reasoning about the prescription. I hadn’t eaten anything. My blood sugar was low while vigilance remained high. Maybe I shouldn’t feel such an impulse to completely understand all the makings of the figures in that glasses prescription grid. Maybe I shouldn’t be noting every comment everyone makes as they do the exams and comparing and slicing and dicing them. Like when the student guy took a turn looking in Stella’s eyes and the doctor told him he’d notice a “duller” something or other, and that was just a downer to hear. Maybe I should just trust that this is the right prescription and no mistakes have been made, no key bits of information overlooked. But dude! It’s not exactly smooth sailing over there! And when it came to the prescription I had a pretty sizable though fleeting misunderstanding.

After measuring, she said she was going to decrease the prescription to allow Stella’s eyes to do some of their own accommodation, which might help us reduce the prescription as she gets older. Surprised, I was all, “Wow, that’s GREAT!” Then she handed me the new prescription, and I stuttered, sadly, “B-but, this looks higher than her c-current prescription.” And I saw in her eyes recognition of my misinterpretation. She paused to look in Stella’s file to find her previous prescription and said, “Ah, yes, this does represent an increase in her prescription from last April.” Then she explained that she was reducing the prescription as measured TODAY. It makes total sense. But when you present a new prescription to a patient, or her mom, shouldn’t you talk about any change and reassure about or explain that change at least somewhat? My confidence wasn’t exactly 1,000% by then based on the other slip-ups, so I started thinking about the doctor’s and orthoptist’s statements that Stella’s eyes are perfectly aligned in her glasses. If they’re aligned, why does she need new glasses? Isn’t that the point of the glasses? Honestly, by then I’d contradicted, questioned, and corrected the doctor a few times already and didn’t want to keep pushing. It was just getting awkward so I let my anxiety start to take over a bit, and I backed off. But now I wish I’d just said it. I wish I’d expressed that lingering doubt, and resolved the issue for my own benefit. For some reason I protected the doctor from further scrutiny. Why I feel the need to shield surgeons from any cutting remarks is a mystery! (Sorry.) Mainly I protected myself from further cringing–I still judge myself to be overly worried at times, and overbearing. I don’t want to create an antagonistic mood wherein people are more likely to make mistakes or be unreceptive to my questions. But I’m Stella’s advocate! It’s up to me to ask all the questions. It’s my job to make sure she gets the best care. This shouldn’t feel like a heavy, overly complicated task, should it?

We had a vision therapy appointment at 5pm that same day. Yep. Our therapist and I thought her eyes would be back to normal by then. Nope! They were still quite dilated, and I had to wake her up from her nap in order to get there on time. Which, duh, is a recipe for sour Tantrum Soup! I expected a tough session and said so to Bethanie, Stella’s vision therapist. I was so wrong. Stella stepped up and knocked it out of the park. We enjoyed tasty Giddy Cooperation Quiche, or something. Bethanie got another heaping helping of Stella’s growing adaptability, sociability and even her hilarious fake evil laughter during the “red light game” in which Stella and Bethanie had great fun together. A delight to behold. We were on top of the world, I tell you! We were invincible! Remember when a regular session of vision therapy resulted in angry desk-clearing? When the yoked prism goggles created an instant bad mood? No more. She wore them agreeably, base-up and base-down, on a balance beam, popping bubbles, reading the letters corresponding with a little moving light, calling out the color of the arrows on a chart while bouncing on a trampoline, and on and on. She did some impromptu victory laps. She said, “I did it!” several times, with glee. How far we’ve come.

In a perfect world, the ophthalmologist’s exam would’ve shown 20/20 (or 20/30) acuity in both of Stella’s eyes. But it’s not quite so simple. The greater context includes minimized toe-walking, dramatically improved peripheral vision, and clearly enhanced stereoscopy. To me, the results of our sojourn with ophthalmology were affirming, like all of the improvements I’ve seen in Stella’s vision throughout the last nine months.

To conclude, a few things I’m looking forward to: Dr. T’s upcoming optometry evaluation and input. Much needed new glasses for Stella as purple tie-dye duct tape is now holding her specs together. A patch-free summer with my vision therapy champion of the world (toddler weight division).

Two points of view. One big push forward.

Posted on by amberhj

Big girl

Big girl bed! New purple glasses! Happy Stella.

In the first chapter of John Gottman’s wonderful book, Raising an Emotionally Intelligent Child, my current daily life is illuminated: “Behavioral psychologists have observed that preschoolers typically demand that their caretakers deal with some kind of need or desire at an average rate of three times a minute.” Stella is officially two and a half, 38 inches tall and sleeping in a big girl bed. She has more demands and opinions and upset and glee now than even just six months ago. She’s in some sort of developmental transition period. At times I’m awed and at others, I’m borderline insane. This is a fun but challenging age requiring tons of patience. A tricky age indeed for vision therapy, which requires focus, patience and the tabling of those smaller demands in order to accomplish something she doesn’t fully understand. (I do think she gets it partially, though.)

Stella recently had two evaluations. One with her pediatric ophthalmologist and the other with her developmental optometrist, within about a week of each other. The conclusions by both were encouraging, overall, but quite different. Our intention was to use the results to gauge how vision therapy was going, especially since Stella’s been resisting more. We wanted to figure out whether we should take a break and come back to vision therapy in six or so months, or carry on.

The ophthalmologist determined that Stella’s amblyopic eye is 20/40 but bordering on 20/30. And that her other eye is 20/30 bordering on 20/20. They go with the lowest number, I suppose, in order to crush parents’ spirits–I mean, in order to be conservative and not overestimate visual abilities. (It does make sense.) She very cheerfully told us we could reduce patching from three to four hours to just two hours. I have not told her that we’ve been patching differently than she prescribed. Instead of patching three to four hours a day with an adhesive patch placed directly on Stella’s skin for complete occlusion, we’ve been patching two to three hours a day with Magic Tape over Stella’s glasses lens, and doing vision therapy, which they will hopefully remain ignorant of because I don’t want it to taint their assessment or treatment of me and Stella. It was reassuring to hear her, someone who said Stella may have to patch for a few years, say that patching was effective and that we could reduce it. At the end of the appointment, I asked her, “So, is there anything else we can do for Stella?” She hesitated for a split second and then said, ‘No. It doesn’t matter what they do while patched.’ And that was that.

Hold onto your hats. In our evaluation with the developmental optometrist, Stella showed 20/20 vision in both eyes. This is huge, and I haven’t really come to fully believe it yet–though I saw it with my own 20/20 eyes. It took Stella a tad longer to see the targets with her amblyopic eye, but not too much longer. She could see the chart’s 20/20 line far away and up close, with both eyes. Sometimes answering instantly, when the smiling doctor playfully sang “quickly quickly!” Why there is a discrepancy in performance between the two appointments, I’m not sure. The testing procedures and atmospheres were certainly different. Mainly, more time was taken at the optometrist, with more nuanced testing done.

Randot Stereo Test

Randot Stereo Test

While I was stunned when Stella identified the teeny tiny symbols (bird, cake, etc.) indicative of 20/20 acuity, I was just as thrilled when, during that same optometrist appointment, Stella was able to see three 3D circle images  in the top left section of the chart (the Randot Stereo Test at left). Last time, she didn’t get any of those and saw only one thing pop out at her–the 3D character in line A in the bottom portion of that left panel. Alas, she still only got one in that section. I suspect that her attention span complicates this, and the doctor did acknowledge that it’s possible Stella can see more than she is able to indicate. But perhaps not. As I’m known to say these days, after over-analyzing some Stella-related concern to the point of boring even myself, “Who the hell knows!?” I’m just grateful for the improvement.

The ophthalmologist’s 3D testing was much faster and simpler. Instead of a multi-layered chart with different lines measuring different degrees of stereoscopy, they used a single large image of a fly–the Stereo Fly test, which I learned about on Strabby (more on Sally and her blog in a minute). Stella seemed to try to pet the insect after some coaxing. They nodded approvingly. I wondered what Stella saw and thought and wished she could describe it to me.

I was crestfallen to hear, at the ophthalmologist’s office, that they saw no improvement in Stella’s vision. Yet they seemed incredibly happy with how she was doing. They noted that the acuity in Stella’s amblyopic eye is and has always been above average for her age. Her other eye’s acuity (with glasses, of course) is way above average. They said her vision was developing very nicely.

Both doctors concur that the eye crossing (esotropia), so far at least, has been eliminated by the glasses. Perhaps with help from vision therapy, as I believe the eyes did cross in exam with glasses earlier on in this journey. I haven’t seen Stella’s eyes cross in such a long time as they are aligned when she wears her glasses, which is all the time, excepting bedtime, bathtime and her weekly half hour of swimming (prescription goggles may be in her future) and occasional fits of toddler rage. Stella’s eyes did not cross in either of the recent exams, even after the typical attempts to break alignment. This is huge, often overlooked by myself and Cody, and worth celebrating with lots of wine. I have so many pictures from her babyhood in which I can now immediately detect the not-so-obvious difference in her eyes’ positioning. We also have photos and videos from her ER visit at 18 months of age, during which both eyes were severely crossed (seemingly out of nowhere, though again, we realize now that they’d been slightly misaligned, frequently but thankfully just “intermittently,” her whole life). We keep the ER images as a reminder of why we’re doing all of this. It’s very difficult for me and Cody to view them, because she looked so vulnerable and clearly couldn’t see anything except foggy blurs. But they’re powerful appreciation boosters, and quickly give me perspective when I’m stressing about Stella’s refusal to go to bed without getting up ten times to talk about Papa Bear’s porridge or flamingos or other topics meant to engage me and delay the train to Snoozetown by a good three hours. (And breathe!)

The bottom line is that her eyes–their refractive power and degree of slight astigmatism and as a result, their acuity–are different. It’s refreshingly simple. The two doctors agree on this. It’s the discrepancy between the two eyes that has led Stella down the path to amblyopia.

Both doctors, seeing Stella through their respective lenses, were very positive. Through the course of both appointments, I was amazed, disappointed, encouraged and informed on several levels. I walked away from these evaluations with some real reassurance, but also some points to ponder endlessly and inanely. Stella’s degree of stereopsis (3D vision) has improved wonderfully in just two months, but further improvement is needed. I wish I’d questioned the ophthalmologist more on their take on this. Do they think Stella has normal 3D vision because she tried to pet the fly (I think we called it a bee)? Are they settling by assuming, “at least she has some 3D vision,” or do they genuinely think she has age-appropriate stereoscopy? I wondered aloud to the developmental optometrist: When Stella has moments of experiencing 3D vision, does it freak her out and lead her to suppress her amblyopic eye? Our optometrist said that yes, this can happen. Which may explain why Stella frequently says, “Mommy I need a break!” But, the doctor explained, if I’m around, serving as Stella’s anchor and emotional safety net, it shouldn’t be an issue. For that reason and many others, I am so happy that I get to be with Stella during this time in her life. I get to be there to eat the pretend lunch she prepared and soothe her when her vision acts up (though I never really know for sure) and observe all the little things that indicate what she’s seeing and experiencing–which prove helpful to this process but might otherwise go unnoticed. I see how her peripheral vision is really good now. I see that puzzles are a breeze. I see her push her left lens closer to her eye. I hear her say things about her eyes that give me hope. I’m fortunate to have this time. Happy to take all (okay most) of it in.

Children's Eye Chart

These are the symbols Stella identifies.

These exams were more than just “let’s see how she’s doing” meetings. This latest evaluation, particularly with the developmental optometrist, was a crossroads. I was nervous. I feared Stella would feel my heart pounding as she sat on my lap in the big black exam throne. We came to this point of decision-making because it’s not only been increasingly tough to get cooperation from Stella for vision therapy at home, but also in the office at times. Some exercises are much more well received than others both at home and in the office. Some appointments are simply better than others and I still believe that she gets a lot out of all of them. At home, it can take over an hour to get 20 minutes of therapy done. (I find that time hard to fit in comfortably–but I suspect other, more normal and organizationally proficient moms might do a better job of this so I really don’t want to deter other families who have a child of two and a half who might greatly benefit from vision therapy.) We’ve been told to do the exercises earlier in the day, when Stella is less tired and there is more natural light, because we tended to shove them in at the end of the day. After a glass of wine, I’m a much more effective and relaxed vision therapist. But I am slowly getting better at overcoming my dread of possible screaming and infinite dawdling and learning to break therapy up into small chunks. A quick matching game (with the patch) before lunch. Sticking skewers intro straws while patched and eating dessert. That sort of thing. Did I mention that I’m not very organized? If The Container Store had a blacklist, I’d be on it. Though I do have a big green plastic box in which I dump all of our vision therapy games and tools, which is a true Martha Stewart moment by my standards.

In the end, due to her gains in 3D vision and acuity as witnessed in the optometrist’s office, and even the ophthalmologist’s thumbs up assessment of Stella’s visual status, we’ve decided to continue vision therapy for another few weeks, at least. With an emphasis on use of the yoked prism goggles, which merit an entire post (coming soon), and more physical exercises that engage the vestibular system and body as they relate to and inform vision, from what I gather, helping Stella’s brain devise a more accurate map of space and her place in it. Stella enjoys those activities more, anyway. Bouncing, rolling, running? She’s in! Donning red/green glasses and slowly scanning the kitchen floor for matches, MFBF style? She’s so done with that particular game. She used to get 15 matches in one shot, now I’m lucky to get five reluctant matches worth of cooperation and sometimes she refuses completely and we both end up in tears. So I have to roll with it and be more flexible than ever. Putting those cards on the wall over the couch and letting her bounce around while searching does help make it more novel and fun. But I’m not sure that exercise is worth it anymore. Stella’s vision therapist agrees and is going to move us along to some new MFBF exercises to build upon this work and mix things up. We really like her–she’s had letters thrown at her, cards torn out of her hands, and shrill, blood-curdling screams shatter her eardrums, yet she keeps a cool head at all times. Me? Not so much. I sweat during those appointments to the degree where I stash deodorant in the diaper bag.

So we are at the beginning of a big vision therapy push. Can I help Stella get to the next level? I sure hope so. We’re going to do our best. We’re seeing progress and it would kill me to break now especially with the promise of yoked prism goggles just starting to be a staple in her vision therapy buffet. If a break is needed after that, fine. But if so, we’ll be back at vision therapy as soon as Stella is ready. Do kids become more cooperative at three? Good lord I hope so because caring for a two and a half year old is like playing with fire. I’ll tell you what, though. I appreciate Stella’s strong will (the screaming? less so) and don’t blame her one bit for resisting patching and exercises, the purpose of which she doesn’t comprehend. Between that and patching, we ask a lot of her. She does amazingly well for her age, and knows her numbers, shapes, and letters better than many kids twice as old, which has helped make a lot of exercises possible. As they say where I’m from, she’s wicked smaht. Don’t even get me stahted!

It’s been twenty seconds since I’ve heard, “Mommy? MOMMY!?” So another Stella need will arise now and I must go. But first a shout-out to our comrade Strabby, who recently had a huge vision therapy breakthrough using a lot of the same therapeutic tools that Stella employs. It is so fascinating to hear her account of her first glimpses of “3D-ish” vision–I bet that’s what Stella was experiencing when she said, “I can see with both eyes!” Strabby gives me a better idea of what Stella might be seeing and going through, which helps keep me motivated. Thank you and congratulations, Strabby Sally. Keep it up. Lead the way to 3D-ville, baby! We’re right behind you!

Cirque de Okay

Posted on by amberhj

My official assessment is that this week’s in-office vision therapy went well. It was interesting, and eye-opening. (Once again I’ve let you down and resorted to puns.) Eye-patched Stella threw a couple blocks in frustration and engaged in impressive evasive maneuvers, but we managed to reel her back in while avoiding a fight. We totally persevered. It felt like a small victory for all of parentkind.

Helpfully, as the session got underway, the vision therapist answered all the questions I’d been asking, having gathered input from the doctor in order to do so thoroughly. And from there, she wisely kept things moving right along from exercise to exercise. In that way, Stella’s in-office vision therapy equates to a miniature three-ring circus with acts designed to mesmerize only toddlers. Imagine a large beating drum in the background and super dramatic announcer voice: “AND NOW, the great spinning disk of wonder three inches off the ground!… gasps and applause… AND NOW, the neighborhood’s tallest block tower, assembled and destroyed before your very eyes!… more gasps and applause… and now, feathers falling from the heavens… entranced silence, some “oohs,” then applause… etc. etc.!”

Here at home, Stella’s vision therapy is also a circus–one in which the elephants, lions and monkeys have escaped and are trampling the ring master and audience. It’s almost impossible to keep the show going for more than three minutes, so we do home-based vision therapy in small stints or whenever she shows interest. Sometimes, she even asks to do eye patch games! Yep. My heart almost stopped the first time she requested vision therapy. In order to better seize these moments, I pre-cut and keep handy eye patches of Magic Tape that I can quickly slap on her glasses’ right lens. Previously, I’d to stop the presses, take off her glasses, put two pieces of tape on the right lens, then carefully and annoyingly cut off the tape edges around the lens resulting in tons of tiny pieces of tape stuck to my fingers and scissors which is utterly unhelpful when you are in a major hurry in trying to take advantage of a very small window of  toddler attention.

At this week’s appointment, opening acts included a matching game–simple but smart in that it forced Stella to hold an image in mind and then scan the floor for its equal. Then, there it was. The therapist brought out this large spinning disc with slim, straight back and white stripes. On this briskly rotating table, the size of a super duper extra large pizza, the vision therapist placed some small colored blocks. Stella’s job was to snag whichever color the therapist dictated. It took a moment to teach Stella to resist grabbing the disc and to only touch the blocks. “Okay, Stella! Get the red block! No, not the table, the red block! You can do it!” She got a couple, placing her hand on them and slowly dragging them off the disc before falling into what looked like a state of hypnosis. So I put her in my lap and gave her a little pep talk/verbal assistance.  I did not, of course, help her get the blocks off the disc. I did say, “Ooh… here comes the blue block… here it comes…. here it comes…” to help keep her engaged and tracking. She got through about three rounds of this exercise (six or so blocks per round)–HOORAY! It was clear, and interesting, to me and the therapist that this was extremely challenging and exhausting for Stella. She almost fell asleep as the therapist stashed the disc away, a marked change from her energy level immediately preceding. We’re talking a full-on daze and string of yawns. Those moving stripes forced her to work so hard to focus, and it took a lot out of her. Even with Stella’s frustration level climbing higher due to fatigue, we plodded steadily through more “eye games.” But she did all the exercises presented. Some more easily, accurately, and agreeably than others. But she hung in there.

The imposing disc of wonder wasn’t the only overt difficulty. In particular, Stella seems quite uncomfortable tracking things that fall from just a couple feet above (with her left eye, anyway). She doesn’t even want to look up for the “balloon game” anymore, wherein I simply toss her a balloon from my standing position so that it falls right toward her hands for catching. But with a small but fun bit of dancing around with scarves and feathers, the therapist got her to follow their descent with her eyes and catch, with me holding her arms to receive them. Chalk up another victory for Stella’s left eye! And hope and sanity.

The session–the stretch following the disc exercise, anyway–reminded me of my basketball-playing days. Early on I was taught to practice free throws after games or drills, when my arms and body were nearly depleted. Because that’s how you get good, that’s how you become consistent, that’s how you hit the winning free-throw at the end of a long battle of a game. “Stella’s left eye is going to be a champion and leading scorer,” I thought! But that’s not QUITE how it’s going to work with Stella’s vision therapy at this point. The therapist noted that she’d save the more tiring exercises for the end of sessions in the future, so as to lower Stella’s frustration level throughout. This makes total sense, doesn’t it? It’s important for Stella to feel motivated or at least willing to go on. If she starts to feel more defeated than successful, her resistance would surely skyrocket. No, thanks!

This week’s vision therapy appointment granted me a couple realizations. First off, good vision therapists and good mothers have a core attribute in common: a careful balance of assertiveness. You can’t use brute force and you also can’t let the kid off the hook. You have to be firm, consistent and persistent, while mindful of the temperament of the individual child. Secondly, the fact that certain exercises are so uncomfortable for Stella made me understand how hard sports or perhaps even reading would likely be for her without the help of vision therapy. I don’t know if we’ll achieve visual perfection, but I have faith that Stella and her eyes will be very much okay.

With feathers, spinning circles, constant encouragement and gentle but insistent correction, we are preparing Stella for the visual demands that lie ahead in the circus of life. “…AND NOW, the social interaction and focus-requiring structure of preschool!… hearty applause… AND NOW, organized athletics of some kind…borderline obnoxious cheers!… AND NOW, completion of a puzzle without angry tossing of the pieces!… And the crowd goes wild!“

Because we just can’t get enough therapy.

Posted on by amberhj

It’s official. Today, I scheduled Stella for weekly, ongoing vision therapy. I feel victorious! As in, “We’re going to the Super Bowl, baby!” (I probably need to get out more.) You see, our second opinion (the first being Seattle Children’s Hospital, where vision therapy was never mentioned, and the third being our current doctor) told us that Stella was far too young to do vision therapy. (How many times can I say “vision therapy?” Let’s see, shall we?*) Also, as I’ve said a million times lately, I just finished reading Fixing My Gaze, and it got me so pumped up about vision therapy that I felt physically uncomfortable with the knowledge that we weren’t pursuing vision therapy. And not only has Stella been taking off her glasses more, she’s been staring into space and rubbing her eyes frequently, too, as she did before getting glasses. Now I’ll have someone to gauge Stella’s vision regularly, someone I can grill in person and upon whom I can dump all my concerns on a weekly basis. Hooray for vision therapy!

So every Wednesday morning, we’ll be headed out for some mindblowingly fun “eye games” (aka “vision therapy”). That’s my brilliant branding for this new adventure. Wearing an eye patch is currently called, “the eye patch game.” I know, I know. My advertising background is coming through in its full luminescence here, I’m a genius and I put Don Draper to shame. Yes, yes and yes.

Upon confirming our slot, the vision therapy office emailed me a preparatory doc entitled, “VISION THERAPY: What you need to know.” Highlights include:

  • Vision therapy programs are individualized. “Each session consists of 45 minutes of one on one care combined with a program of daily home oriented therapy.”
  • We will be given “vision therapy handouts and supplies for home therapy use that will change periodically.”
  • “The majority of patients in a once a week program are in vision therapy for nine months to one year.”
  • Progress evaluations must be scheduled every three months regardless of the number of vision therapy sessions that have taken place during that time.

I am totally bringing chocolate chips, maybe even a baker’s dozen from Trophy Cupcakes, to each session. Whatever it takes to reward and encourage cooperation! Stella is 24 months old and is going to be asked to “focus” (in one way or another) for 45 minutes straight. I know she can do it. I’ve seen her concentrate intensely on an enormous ice cream cone for at least that long. I know we can make it work and I know this doctor knows what she’s doing and is fully aware that Stella just turned two. I know I know I know. But (shockingly) I’m a little nervous. Kind of like that time I bitched endlessly and fought like hell to get a promotion, then when it was finally handed to me, I freaked out and realized I didn’t know what the hell I was doing. “Idiots! What were they thinking giving me all these new responsibilities! I’m not ready for this! Oh wait…”

But seriously, it’s all coming together. Another bit of encouragement emerged on Monday evening at our PEPS (Program for Early Parent Support) gathering. (PEPS is just a bunch of parents-to-be that get tossed into a group that starts meeting weekly once the babies are born, within a month or so of each other. Basically, for new parents, it’s a way of feeling less insane.) Turns out one of the mothers in our PEPS group had double vision as a child, mainly when tired–fatigue is also what triggers Stella’s eye crossing. She admitted that in an attempt to see clearly, she wound up walking around with one eye closed. Her mother got used to seeing this, and like most young kids she was very good at compensating for the vision problem. As a result, she said her mom pretty much let it go until a friend called her out on it. She was told to wear a patch, but her parents opted for vision therapy instead! My kind of people! She did vision therapy for a year at around age six and that did the proverbial (literal?) trick–it’s just amazing to me. She’s had control of her eyes, and no double vision, since. Her recollection is that the sessions were fun, with engaging activities, but that she felt very tired afterward. And, because apparently she can read minds and intuited my concern about Stella’s age, she mentioned that while she was school age during her vision therapy, kids of all ages could found in the waiting room. (Thank you, PEPS pal.)

This sort of discovery keeps happening! Stella’s glasses and patch have been the gateway to all kinds of stories about patching and eye crossing and visual whatnot from just about everyone we know, and even some we don’t. It’s news to us but apparently everyone has a sibling or close relative who faced the same type of vision issues in childhood. I should’ve known! In Fixing My Gaze, neurobiologist extraordinaire Susan Barry points out that about one in 25 children has strabismus or a binocular vision problem. That’s roughly one in every classroom. It’s become clear that Stella is in good company, and it all feels so normal now. Which blows my mind. Normal and I aren’t close but I’ve always wanted to get to know him. Some say he’s boring but I find him absolutely fascinating!

One other bit of insight I took away from that vision therapy handout: This shit is going to be expensive. Did I mention I’m looking for freelance writing gigs? Go ahead and picture me, out on the internet highway, holding a shabby virtual sign that reads, “WILL WRITE FOR VISION THERAPY.” See? Completely normal.

P.S. Found this at covd.org, a “World Health News Today” segment on vision therapy for children.

* Tally: 19 “vision therapy” mentions. 20 if you count that one. I can totally do better. Vision therapy! 21.

Back into battle! I think I’ll call it “Operation Shark Patch.”

Posted on by amberhj

I’m not even going to pretend to be positive right now. I’ll get there. But not yet. Because I’ve just been asked to do the equivalent of putting mascara on a shark. For hours each day.

Yesterday we found out that Stella is starting to favor her right eye–her left eye is just ever so slightly starting to be tuned out by the brain. So we have to patch Stella’s right eye for three to four hours daily, to force her slacker eye to work harder and get tuned back in. My first, very gentle attempts at encouraging patch use reminded me of the horrors of inserting Stella’s NG tube into her nose when she was three months old. The screaming and utter rage and fear and defiance. She will not let me stick that thing to her face–not even if it’s pink and red with music notes and hearts on it. No. Way. So I’m taking a step back and re-grouping. Ordering books about patching and pirates. Buying her a pirate costume and a DVD featuring a cast of patched puppets. Ordering five different types of patches–namely, a pirate-style patch, two styles of cloth patches that go over the glasses, and two styles of cloth patches that go under the glasses. Anything but adhesive on Stella’s skin. Seriously, F THAT. Been there, done that, and have pictures of redness and irritation to prove it. I’m not even going to TRY to patch Stella again until my patch propaganda has been absorbed, and the non-sticky patches are in hand.

Yeah. So I’m just going to go ahead and say that this blows. I was blindsided by this news in yesterday’s follow-up appointment at Seattle Children’s ophthalmology. I didn’t think this was on the horizon for Stella. Yes, a military metaphor is probably wildly inappropriate in this situation but I can’t help it: I thought we’d won the war. I had a “MISSION ACCOMPLISHED” banner hanging in our living room. Through much “strategerizing”, focus, effort, and expenditures, we got her to wear her glasses! Her eyes stopped crossing! But holy crap there is a huge battle is ahead. Could it be our toughest yet? Doesn’t matter. We have no choice! To save Stella’s vision, particularly that of her weaker left eye, we must patch her strong eye. No effing way am I going to let her eyesight and quality of life go downhill. Not when there is something I can do about it! Even if it’s as insane and seemingly impossible as putting an eye patch on the eye of a small tornado.

Guess I better set my ring tone to “Eye of the Tiger,” smear on some war paint, and do some push-ups and wind-sprints and shit. Oh wait–this is the new type of war. Where brute force is obsolete. I must infiltrate the mind and culture of my target (check! i.e. puppet DVD, books, pirate garb) and win her heart. Again. Possibly with chocolate and a new play kitchen. War really is expensive and good for the economy.

May God have mercy on our souls.

Open wide

Posted on by amberhj

So, as I reported earlier, we visited Seattle Children’s Hospital this week to see Robin, Stella’s wonderful and very wise occupational therapist. We wanted to check in and see how Stella is doing with solids. We were worried because she wasn’t eating as much as a nine-month-old is “supposed to” by now. She had not been showing any aversive behavior, and once in a while she’d chow down on bananas, avocado or toast, but overall, her intake of solids seemed pretty low–maybe 1/4 of a cup for an entire day and a few bites of finger food. And it was taking *forever*.

Well, Robin assured us that Stella was just fine. In fact, Stella has no feeding problems anymore, at all. I knew this deep down, but it was an incredible relief to hear it from our trusted expert.

We realized that the problem was us–not Stella. Robin gave us some very valuable pointers on how to feed Stella more effectively. It turns out that we’d been so afraid to push Stella, based on early battles over breastfeeding and bottle-feeding, that we weren’t offering her enough via spoon. We were way too timid. Stella doesn’t need to be coddled. Ever since our meeting with Robin, we’ve pretty much been “shoveling it in” and Stella has been enjoying 1/4 to 1/2 cup of baby food plus a few bites of finger food at each of her three meals. Just like she is “supposed to.” It’s amazing!

She seems to really enjoy my homemade blueberry puree mixed with a bit of cereal, and that makes me so happy! That said, Stella has a nasty cold, which is making food less appealing to her–especially chunky things like finger foods. She’s thrown up immediately after some of her meals due to coughing fits, but it’s tapering off as the worst of her illness appears to be over. It hasn’t slowed her down too much, but I’m interested to see how eating goes when she feels better.

Stella had been taking enormous bottles, up to nine ounces at a time for a total of 30 ounces of formula a day. Contrast that to the days when when 3 and a half ounces was HUGE! So in the two and a half hours before her first nap, she was getting 400-450 mls (that’s up to 15 ounces in the first couple hours!). No wonder she wasn’t into solids. She was full! As a result, we’re in the midst of a schedule shift. I’m almost embarrassed to admit this, but it’s made me anxious.

We had our old schedule *down.* I knew roughly how much she would eat when, and it created a nice comfort zone–for me as much as Stella. Well, as she grows we need to adjust, and that’s what we are doing now. But a low-level panic infiltrated my day. By fitting in these larger meals of solids, we are messing with the timing and amounts of her bottles. She doesn’t seem hungry enough to take a bottle RIGHT after solids. I don’t know exactly when she’ll get her 24-30 ounces for the day and it makes me nervous. I have to watch for hunger cues more closely. So, I am officially out of the comfort zone, and am figuring out what works and what doesn’t. It’s a bit of a throw back to when Stella had her tube and when we were weaning her. I never really knew when she would want to eat. I just had to pay attention and wait–not my strong suit.

I’m giving myself pep talks, and they are effective.  They sound a little bit like this:

“If I can survive the anxiety of a newborn that won’t eat, pumping around the clock, mastering the use of a god damned supplemental nursing system, navigating the complexity and chaos of hospitals and healthcare, inserting and maintaining an NG tube, getting no more than three hours of sleep at a time for two months, weaning my baby off of the tube and curing her aversion without (completely) losing my mind, I think I can figure out a new feeding schedule. Damn it, I can do just about ANYTHING.

And so can Stella.”

Return trip

Posted on by amberhj

It’s not an emergency. Nothing is really “wrong.” But we’re about to head back to our old stomping ground: Seattle Children’s Hospital. We’re going there to see Robin, Stella’s occupational therapist. Stella isn’t warming up to solids the way all the charts and books say she “should” by now, at the ripe old age of nine months, so we’re looking for some reassurance and perhaps a few tips on how and when to best offer food to Stella–without getting pushy. As we learned with the bottle, pushing only makes her want to eat less.

This morning, a vision from the past won’t leave my brain. I’m not sure why. It brings me back to our first appointment with Robin, before Stella got her tube and back when my entire day was consumed with the struggle to feed Stella. That morning, Robin filled me with hope. She watched Stella scream at the prospect of eating, she watched us spend a half an hour battling with Stella to get her to take three ounces. And then she said, “I’m going to see you through this,” and I suddenly felt a lot less helpless. But that’s not the moment that’s been on my mind.

I remember departing the room where we’d met with Robin, and walking down the hall toward the waiting room with Robin at our side.  Coming toward us at a brisk pace was Robin’s next appointment, a new mother accompanied by her own mother and arduously lugging her baby, left hand gripping the handle of the car seat. She walked with her entire body at an angle, as a counterbalance to the weight of the baby and her seat. She swung the seat forward a bit with each step, lurching along. The baby was peaceful but alert, with an NG tube taped to her right cheek. That terrified me at the time–I didn’t want Stella to wind up with a tube. But it was the mom who got me. There was such determination in her face and in her stride.  She was clearly focused on the task at hand, eager to learn more about how to help her baby. Eyes locked on her destination. Moving awkwardly, but forward. I’ll never forget that mom.

We’re off. I’ll let you know what happens.

Nine months

Posted on by amberhj

Stella's a little shy in the pool--at first.

Stella's a little shy in the pool--at first.

So, Stella has been outside the womb for just about as long as she was in it. This seems like a big milestone to me and my uterus.

Stells (that’s not a typo–it’s one of our nicknames for her) celebrated her nine-month birthday on Sunday. The occasion was marked with a Waterbabies class (with a stop at Bellevue’s Downtown Park beforehand), and a walk to Gasworks Park. The next day, we went in to Dr. N’s office for her nine-month check-up. Ah, yes. Time for those dreaded percentiles.

Cody and I let out a sigh of relief and our shoulders dropped about six inches upon seeing the number on the scale: 19 pounds, 2 ounces. We knew that if she wound up at 19 pounds or so, she’d be at or above the 50th percentile for weight. I know, I know. It doesn’t even matter. One look at Stella tells you how happy and healthy she is. But we’ve got a nasty, lingering case of feeding aversion/tube-induced PTSD  and are grateful for any extra reassurance.

After the measurements were taken, the doctor came in, shook our hands and started tapping away on his touchscreen. He’d plugged in Stella’s stats in order to show us her growth curves, charted electronically.

“Look at this beautiful curve, ” he said, highlighting the fact that Stella’s weight was right between the 50th and 75th percentiles, just as it had been at her six-month check-up. He continued, with a bit of sing-songy positivity in his voice (which I loved), “And this curve looks great…” We saw that, for length/height, she was in the 75th percentile, just like last time. We were flying high.

Then, pointing to a dot, adrift above the highest percentile curve, he noted, “And this is how smart your baby is.” He was kidding, of course, but her head size was clearly “off the charts,” as they say. Last time, it’d been on the highest curve. Her head circumference has risen by a few percentiles between each check-up apparently. It’s not uncommon, really, and not a concern. Unless it keeps going, of course. In which case learning to walk will be a lot more challenging.

In short, Stella is thriving. Her doctor told us to feed her solids three times a day (I’d limited it to two, fearing that she might not take enough from the bottle otherwise), and to stop tracking how much formula she takes outside of that. He also suggested changing her formula to the normal 20-calorie-per-ounce concentration, which we have done. At one point, in the wake of all this, I stuttered, worriedly, with what I’m sure was a look of concern and confusion, “Um, so, like, h-how much f-formula does she NEED now?” The doctor kindly told us that we’d worried enough, and that we could stop now. Worry had become like air to us. So we are pretty much adapting to life on a new planet.

He also pointed out that, in a way, we are allowing Stella to wean herself off of the Ranitidine by not upping the dose as she grows. It reminded me of the progress she’s made int hese last three months. She’d been on two reflux medications until a couple months ago. We’ve lowered the amount of Simply Thick we put in her bottles, with the goal of soon weaning her off of that, too. She is back to the “normal” caloric density for formula–just like I’d predicted (boldy, it felt at the time) in her early tube-free days.

And that brings me to my point. So often, these days, when I look at Stella’s impossibly beautiful, beaming face, I can’t help but cry. Especially when she laughs. I remember, somewhere in the dark, dark days of December, bawling at most commercials. Our situation and those post-partum hormones were brutal–even bland Sleep Country USA ads opened deep, previously forgotten psychic wounds, apparently. But there was something especially gripping about the “Peace on Earth” spot for Pampers. Those soft, gorgeous baby faces! Those cherubic, chubby cheeks! Yes, those cheeks. Those cheeks, free from evidence of medical intervention. Those perfect baby lips, moving as if the baby is nursing in her dreams. They tormented me. Because to Stella, eating was a nightmare, not a dream, and our view of her angel face was obscured by two kinds of tape and a long yellow tube. Those babies were chubby and sleeping in a sprawled out fashion–not being force-fed while sleeping swaddled and strapped into a giant foam wedge. That commercial just seemed cruel to me at the time.

I go into her room and look at Stella every night before I go to sleep–despite that fact that by doing so I risk letting our super creaky floor wake her up. I have to do it. How could I miss out on the most beautiful sight imaginable? It is a triumph, a joy and a reminder to be grateful. I just watched the Pampers commercial again. And I have to say, Stella would fit right in with that bunch of sleeping angels–those arrogant bastards.

Wrong again. Then right.

Posted on by amberhj

There have been so many times during our seven months with Stella when we thought we had everything figured out, only to discover that we were completely wrong.

Back when she was refusing to eat and not gaining much weight, before her two months with the tube, we were, at one point, convinced that the issue was her poor latch. Then it was my low milk supply. We were way off, and it would take us a while to realize that Stella’s latch was indeed okay–she just didn’t want to take in milk and acted accordingly, which led to my low milk supply and not the other way around. Then we were certain that THRUSH explained why she didn’t want to eat. Nope–the doctor took one look and shot that down. Then it was lactose intolerance that was the cause of all our trials and tribulations. Wrong again! Her lab tests pointed in another direction (cow’s milk protein intolerance–whatever that means).

One night last week, Stella woke up AT LEAST a dozen times and screamed her head off upon opening her eyes. She shook her head from side to side. She was furious and clearly in pain.  Holding her, bringing her to our bed–all the usual no-fail tactics–did little to nothing to soothe her. She was incredibly fussy with the bottle (our nightmare revisited). But we thought she’d just fought off a bug of some kind, so after some quick online research, the answer seemed obvious: Stella had an ear infection.

Nope.

The next day, a pediatrician told us with 100% certainty, after peering into Stella’s adorable ears, that there was nothing resembling an ear infection. She also felt around Stella’s tummy, applying pressure in an attempt to find intestinal discomfort. There was none. There was no source of pain that could be identified, except for her second tooth coming in, just to the left of the one, in the front on the bottom, that came in a couple weeks ago. The last time a tooth erupted, sure, there was fussiness around eating but not endless bouts of screaming and almost completely sleepless nights. We were baffled. Again.

And to make matters worse, at her appointment, she weighed in a full two ounces less than the previous day’s doctor’s visit (she’d been acting like a rag doll and was clearly sick, then we thought she fought it off, then she stayed up all night screaming, then we thought she was okay for a day, then she developed a horrendous cough). Which put her one month weight gain at a mere 4 ounces and just about sent me off the edge. With the doctor’s help, we came up with a game plan to get her some additional calories. I’ll be mixing in rice cereal with all her spoon fed meals–though I don’t think she’ll ever take as much rice cereal as they want her to because she simply doesn’t like it. We have all but removed the fruit in her bottles, as it may have a laxative effect (especially the prunes) and take up the space of the more nutritionally important formula. (Though in hindsight, that plan seems futile–a sweet sort of futility made up of good parental intentions. Stella will eat what she wants to eat, when she wants to eat. And there is so incredibly little I can do about it.)

Just when we thought everything was going so well.

But then, earlier this week, she ate 30% more than she is “supposed to.” And now, she’s back to not wanting to eat, because she appears to be teething (she chews on the nipple, doesn’t want to suck, yadda yadda.) I guess that’s just the way babies are. Last week, Cody was feeding Stella, and despite how much I love her (so much that it makes me crazy sometimes), I just wanted to leave. I didn’t want to hear the crying. I didn’t want to worry myself sick. I didn”t want to wrestle with the mystery of  “what is wrong now.” I just wanted her to be okay. To be healthy and happy. How can such a simple wish be so heavy?

Well, today I’m in a different place. Cody just fed her. She took about 100, far below her usual. But I don’t feel the need to avoid the situation. I am not as worried. Something has changed. Maybe because for the few days preceding this teething strike, she ate like a champ. She ate like you read about. She ate like eating was hip and she was a hipster. She ate like it was the only thing worth doing. So, if for a few days she doesn’t eat as much, how can I really worry? She is doing what she needs to do. I trust her. She is not the baby that used to scream her head off when she saw the bottle. Nowadays, if she doesn’t want to eat, she chews on the bottle. The bottle is her buddy, not her enemy. Her new tooth isn’t a buddy at the moment, but that’s okay. She is a baby, doing normal baby things. I am a new-ish mom. Experiencing normal new mom things. We are “normal.” (As normal as there is, anyway.) There is no tube. There is no feeding aversion. We are so blessed. And to worry this time in our lives away would be criminal.

Seriously. She is so cute I can’t stand it. I am so mindblowingly lucky. And gratitude now outweighs worry. By far. What a difference a few months make.

With that, I’m dragging Cody and Stella to Molly Moon’s. After all the emotional progress I’ve made, a sundae is in order. Make it snappy. And don’t you dare skimp on the whipped cream.

Lucky seven. (Months, that is.)

Posted on by amberhj

Stella's got what they call "stage presence."

Stella's got what they call "stage presence."

On St. Patrick’s Day, Stella turned seven months old. I’m pretty sure that means she can get a driver’s permit. And maybe even a part-time job. At the very least, she can sit up for long periods of time before the weight of her large head pulls her over. She can tickle the ivories like you wouldn’t believe. And when sitting in her crib, she can pull herself up to a kneeling position–the gateway to standing.

That evening, as my amazing corned beef simmered in a broth of beer and spices, Stella’s piano showed up on our doorstep. The house smelled like Ireland, and dreams, which was somehow extremely appropriate. We opened the box–an event that was very, very exciting judging by Stella’s even-wider-eyed-than-usual expression as I sliced the tape with my trusty blade–and out the baby piano came in all its shiny red glory. I placed it on the rug, plopped Stella in front of it, and she banged those keys as hard as she could while smiling as wide as she could. Then she promptly forgot all about it and tried to eat the accompanying manual and play-by-color sheet music. Paper is Stella’s #1 passion for now. But music is a close second. After I tucked away the paper goods, she resumed her performance with incredible enthusiasm, intermittently grabbing the top and, impressively, pulling the entire piano toward her. You could see the wheels turning in her head; “Maybe if I try hard enough, I can get the top of this delicious piano into my mouth… mmmmm, piano…..”

Stella’s Little Mozart Piano is really like a musical friend than a toy. Right now, she simply sits on the floor in front of it, and it’s the perfect height. But the piano can be raised up by attaching the base that comes with it, allowing the child to stand or sit on the accompanying shiny red bench and play, making it “the piano that grows with your child.” I think it’s brilliant. Stella absolutely loves it. We really should be saving money rather than spending it, but this was worth the splurge. A long-term investment in FUN.

Yesterday, Stella was not herself. She was cranky and tired in the morning, and grew steadily more so as the hours passed. I realized that she had spent more time sleeping than awake, she was a rag doll, crying unless I held her. And instead of squirming and pushing away from me to look at her surroundings, she curled up into me, resting her head on my chest. Stella was sick for the first time. She had a slight fever and threw up a couple times that evening. But today, she is back to her old self. She dropped that bug like a bad habit! Cody took her to the doctor this morning, and her fever was gone. She checked out fine. And really, seven months was an excellent run!

HOWEVER. Her doctor’s visit entailed a standard weigh-in. Sigh. If she hadn’t fallen ill, I wouldn’t know that she’s only gained about 6 ounces in a whole month. Now I’m anxious and confused. I’m trying to cope, but my attempting to remain calm in the face of this worry is like an alcoholic trying to stay sober in a bar. About a week ago, we switched Stella’s formula from a 24-calorie-per-ounce concentration to the standard 20-calorie-per-ounce ratio. Granted, this means that for most of the month, she was on high-caloric formula, so perhaps we can’t blame the new lower concentration. Since the switch, I’ve been keeping track of her intake and it’s been high–between 30 and 32 ounces per day. Right on track! And this is in addition the face that Stella is mastering the art of spoon feeding. At first, far more food wound up on the floor, high chair tray and her bib and clothing than in her mouth. WAY MORE. But now, she’s swallowing way more food than ends up on her and various kitchen surfaces. On Tuesday, she even finished a whole container of peas in one sitting. Just another reason I’ve been saying “Bravo!” to Stella.

Top o' the mornin' to ya.

Top o' the mornin' to ya.

So, in regards to her minimal weight gain, I am completely baffled. I emailed her occupational therapist to get her thoughts, and perhaps some reassurance. Stella’s doctor didn’t express any concern over her weight, so my worry is “proactive” as usual. I’ll probably schedule an eight-month weight check in order to ease my mind. In the meantime, I’m trying to focus on Stella’s behavior and demeanor instead of her weight. Certainly not the fact that she still fits in some 3-month size clothing. She seems happy and healthy–with the exception of that 24-hour bug–and that’s what counts.

When we’re not playing the piano, eating, napping, or out for a walk, we’re trading fake coughs. I’ll fake a cough. And she’ll fake one back. And then we laugh. It’s good fun, though probably setting her up for hypochondria. Or an acting career.