They say it’s impossible to know how good your homeowner’s insurance really is until you file a claim.
The same can be said of your local hospital.
Until 2012, I had only a handful of experiences at Akron Children’s Hospital.
When he was in the second grade, Jules was tested and diagnosed with dyslexia at ACH. One of their orthopedists confirmed Hugo’s mild scoliosis and told him he had nothing to worry about. And ACH’s sports medicine department diagnosed Claude’s Osgood Schlatter disease, an inflammation of growth plates at the end of the tibia common in athletes who are growing rapidly.
Lyra, however, is an ACH frequent flyer. This month alone she has 11 appointments.
On her second day of life, we met for the one and only time with Dr. Catherine Ward-Melver, a kind geneticist who confirmed Lyra’s diagnosis of Down syndrome.
On her third day of life, we met Lyra’s ophthalmologist, Dr. Richard Hertle, whom we’ve seen multiple times a year ever since. He has operated on each of her eyes two times.
When she was 5 months old, Lyra was diagnosed with hypothyroidism, a condition common in people with DS. Certified nurse practitioner Stephanie Marszal in the endocrinology department is also someone we see regularly. Our visits with her are like double dipping, for Marszal worked in a pediatrician’s office before specializing in endocrinology. She provides both an update on Lyra’s thyroid and an extra wellness visit.
In the second half of her first year, Lyra began the infant block of therapies offered at ACH. Physical, speech and occupational therapies in back-to-back half-hour appointments make effective use of everyone’s time. Children from birth to 3 years old are eligible with a qualifying diagnosis.
Speech therapist Shelly Vaughn had Lyra singing Itsy-Bitsy Spider at our first visit, leaving me slack-jawed. Heather Reiss, her occupational therapist, got Lyra to work, work, work on both fine and gross motor skills all while Lyra thought she was playing. When she aged out of the infant block, I cried because I had grown so close to these ladies.
These days, Lyra has four speech therapy and two occupational therapy appointments per month. When we pull into the parking lot, Lyra chirps eagerly from her car seat, “Lisa, Miss Margaret!” Still, I sit in on enough sessions to know they make our girl work. Recently Margaret Norin, Lyra’s OT, told me, “I wish just once my clients with DS would say ‘Yes!’ the first time I ask them to do something!” Oh, yes, I could not agree more.
With Down syndrome comes a cascade of tests to rule out various issues. Annually we visit Dr. Diane Langkamp in the Down syndrome clinic to make sure we are on top of these things. (Down syndrome clinics are overwhelmingly located in the northeastern U.S. and I do not take for granted that we have one in Akron.)
Last year, an ACH otolaryngologist (ear, nose and throat doctor) ordered a sleep study for Lyra. Kids with DS have a higher rate of sleep apnea due to certain anatomical features. Any child not getting enough sleep has an increased risk of developmental delays, and children with DS need fewer, not more, developmental obstacles.
Most people with DS not only have low muscle tone, they frequently have ligament laxity. One common effect is foot pronation — ankles tilting toward one another while the toes splay outwards, fin-like — so Lyra has worn braces on her feet since she began walking.
But ligament laxity also affects the cervical spine. An injury to the atlantoaxial joint, or the first and second cervical vertebrae, can lead to paralysis or worse. So on July 20, Lyra had a spinal MRI under general anesthesia to examine the joint.
This past Thursday, Lyra also had an eye exam under anesthesia. Were she a more “compliant” patient, this would not be necessary. But Lyra fights like an oiled otter when getting examined up close and personal. Dr. Hertle needed to determine her first bifocal prescription and also test her for glaucoma. Because of her congenital cataracts and subsequent lensectomies, Lyra has a higher risk of glaucoma than the average bear.
Dr. Hertle. If I could put heart emojis in my column, they’d be here. When I learned my newborn needed eye surgery ASAP, I called a friend in a related field and asked who was the best in Ohio. Doctors hate talking about which practitioners are better, but as a friend of more than 30 years, this doc made some calls for me.
We’d be hard pressed to find a better pediatric ophthalmologist. Gentle and effective with Lyra (remember: oiled otter), when asked questions about the eye and his surgical techniques Dr. Hertle lights up like a boy getting his first puppy.
I learn other things from him too. When Lyra was 9 months old, she suddenly seemed to “awaken.” Dr. Hertle explained to me that the nerves in children with Down syndrome myelinate later than in typical kids: “See that wire down there,” he said pointing to an outlet with a thick cord plugged into it. “Because it’s insulated, electricity can travel faster. The same is true of nerves when myelination has occurred.”
I know of only two things lacking at ACH: One, the food could be better. Across the country, hospital restaurants serve food that is healthy, delicious and affordable. ACH has made some baby steps (two thumbs up for the cafe in the Kay Pavilion) but there is still ample room for improvement.
Also, all departments, including the ER and the surgery centers, should have more than popsicles and graham crackers (Goldfish, please).
The second deficit is big for us: No optometry. Because of her vision impairment, Lyra qualifies for a state insurance program called BCMH (Bureau for Children with Medical Handicaps). It helps with her visits to Dr. Hertle, but ideally we’d be able to use it for her glasses, too.
Lyra has no lenses, natural or artificial, in her eyes. Her glasses are essential and expensive. In order to use the BCMH insurance, however, our primary insurance must get billed first. The only optometrist’s office in the northern half of Ohio that takes both our primary insurance and Lyra’s BCMH is at Nationwide Children’s Hospital in Columbus.
But these concerns are no more than a couple of cirrostratus clouds in a bright blue sky. Not a week goes by that I don’t thank the universe that it takes me less than 15 minutes to get Lyra to some of the top medical professionals in the country.
Not only is it an immeasurable convenience for Summit County residents, ACH has no shortage of business, or so Lyra’s neurologist told me recently. Which means ACH provides great medical care where it is greatly needed.
I know parents of children with Down syndrome who have moved to different states for better medical care. That decision is one we will never have to make. If ACH were an insurance company, we’ve filed just about every possible claim. And since the results typically exceed our expectations, we know firsthand how good it really is.
This was first published in the Akron Beacon Journal on Sunday, July 29, 2018.
Whoopsie Piggle can be found on “Down syndrome Blogs,” a site that aggregates Down syndrome blogs by category. One of the categories where Whoopsie Piggle is listed is “Dual Diagnosis” because Lyra was born with congenital cataracts in both of her eyes. Since her birth, the idea of my child being blind has been far more worrisome for me than her diagnosis of Down syndrome and while I hope this essay appeals to a variety of readers, I most wish to share what we have learned with parents of children who have both Down syndrome and vision impairment issues.
This past fall I finally gave up. And when I did, my relief surprised me.
“You know, even in kids without Down syndrome, somewhere between 18 months and four years old they typically stop tolerating contacts,” said Lyra’s ophthalmologist more than a year earlier when we started having problems keeping contacts in Lyra’s eyes. When she was a baby the same doctor had said that he would prefer to keep Lyra in contacts for as long as she tolerated them. The word “tolerate” when used in a medical setting sounds like a biological event over which there is little control, such as when organ transplants are tolerated or rejected by the recipient’s body. But in the case of contact lenses “tolerate” is a euphemism referring to behavior.
Lyra began wearing contact lenses when she was six weeks old. Because she was born with cataracts in both eyes, her natural lenses were surgically removed. Unlike when an adult has cataract surgery, however, synthetic lenses were not swapped in where the natural lenses had been removed. That’s because Lyra’s eyes continued to grow for at least another year after her surgeries. When her eyes were done growing, transplants were theoretically an option, which one of the younger doctors in the ophthalmology practice suggested.
“Young doctors love to operate,” said Lyra’s surgeon, who is the head of the practice, “but when you get older you recognize it is sometimes better to wait. Now if she comes to me at eighteen and says she wants implants, I’ll do them. But if she can do fine with contacts, it’s better to wait.” I agree for three important reasons: First of all, intraocular transplant surgeries in children under the age of five have far more complications, resulting in additional eye surgeries up to 72% of the time. Secondly, accurately determining what strength to give a surgically implanted lens on a child who is preliterate and unable to perform the typical acuity tests (Which one is clearer? A or B?) is never ideal, and, finally, I believe by the time Lyra is eighteen the field of intraocular lens transplantation will only have improved, perhaps significantly.
But back to tolerating contacts. The first two years Lyra wore them, I occasionally found one of her eyes nakedly free of any contact. Usually when this happened, the lens was ready to be replaced, which we did with the staff at the ophthalmologist’s office every three to four months. A new lens is shiny and clear, but over time protein accumulates, dulling the surface. I’m sure as they get dirtier, the contacts are less comfortable and I was not surprised when Lyra rubbed them out from time to time. This started happening more frequently after Lyra’s second birthday. Then this past spring, a few months before Lyra turned three, the pollen count rocketed higher than in most years. Lyra and everyone else in the house became sneezing snot buckets. Contacts disappeared weekly and at roughly $150 per lens, replacing them is not something to sneeze at. “It’s time,” said the doctor, “she’s spending too much time wearing only one lens and it’s too stressful putting new ones in this often.”
Two things in Lyra’s life have never been easy and have only gotten harder as she’s become bigger and stronger: quarterly blood draws to monitor her thyroid levels and contact lens changes. When she was a baby, I sat with Lyra on top of my legs with her head on my knees as one nurse put the speculum in her eye while the other one removed her old lens and put in a new one. The speculum was always necessary because Lyra clamped her little eyelids closed so tightly it was impossible to keep them open using fingers alone. When she was larger, I held Lyra sideways in my lap while one nurse held her head, another operated the speculum and a fourth nurse conducted the lens change. Always, Lyra screamed herself hoarse and became slippery with sweat. After doing this weekly for a month I lost all determination to keep her in contacts.
“Many kids love glasses and stay in them for years,” said the doctor when they removed her final contact lens. Even though there was only one lens to remove, afterwards Lyra remained upset and refused to wear her new glasses in the doctor’s office, wanting nobody and nothing near her eyes. I tried again later that day when we were home and she promptly pulled them off her head and flung them across the room. Now what? I fretted. She can’t go around with absolutely no correction. Her prescription is +19 in one eye and +20 in the other, qualifying her as legally blind (for comparison, I am quite nearsighted and my prescription is -3.75 and -4). I contacted the vision impairment specialist who used to come to our house with Lyra’s county caseworker. She sent me a list of tips for getting kids to wear their glasses, which assumed you could get them on the kid in the first place. I went to bed that night believing we might need implant surgery after all.
The next morning when I got up and went to the kitchen for coffee, Max was sitting at the table. “Look at Lyra,” he said. Because she sits at the end of the table, her back was toward me when I entered the kitchen. I came around and there she was, wearing her glasses while eating her breakfast. With the exception of the following day when she hid them in a pot inside the oven of her toy kitchen, Lyra has willingly worn her glasses ever since. In fact, when she gets up in the morning she often says, “Hi! I want axes.” Which is how she pronounces “glasses.”
Why was I so resistant to abandon contact lenses? What I told myself was that Lyra would not be able to see as well in glasses as she could in contacts. For anyone who has worn both glasses and contact lenses, it is often the case that contacts give a more precise, if not significant, correction. In part because the lens is directly on the eye and not a few centimeters away. But it was Max who hit on the larger reason. Max, who took Lyra’s diagnoses in stride since the very beginning and never grieved over Lyra’s Down syndrome because, as he told me, he just loves her so much as she is. That hasn’t changed, but with fierce love comes the desire to protect. “I wish she didn’t have to wear glasses because it’s one more thing that identifies her as different,” he said to me about a week after Lyra switched to glasses.
Though variation is substantial, people with Down syndrome, unlike other conditions, bear identifiable physical features. Chief among them are almond-shaped eyes due to epicanthal folds of the upper eyelids and flatter facial profiles. In the morning when she sits on my dresser in front of the mirror where I brush her long blonde hair, Lyra looks glamorous. But she cannot work with hair in her face and she cannot see without her glasses. Once her hair is smoothly secured in colorful elastic bands, I place her glasses over her head and around her neck like a necklace, then pull her hair over the safety band that connects the stems. Quickly Lyra grabs the frames and perfectly positions them on her face. “Hi!” she then says every time, looking me in the eyes.
Her glasses are so thick they feel almost like marbles when I rub them clean with soap and water, as I do many times a day. In contact lenses, Lyra often squinted, making her eyes look small. The magnification of her glasses is so powerful her eyes appear owlishly big, drawing attention to her face. Her vision impairment is now as patently obvious as her Down syndrome. More than before, in public people comment on how cute Lyra is. Like three-year-old boys in ties and sports coats, glasses on such a small girl looks endearingly adult. But what happens when Lyra is a teenager and, later, a woman? I have long felt more at ease with Lyra having Down syndrome than I do with her vision issues. And here’s why–Lyra is healthy, a social extrovert and very bright. Understanding that Down syndrome effects cognition, at three-and-a-half years old Lyra is no longer an enigma. She will do well in life with the right support, which we give her and will do so for as long as we can. Beyond us, Lyra is blessed with four adoring brothers whom I have no doubt will look out for their sister when Max and I are dead. (It happens and we don’t pussyfoot around in talking about it.) But my daughter as someone who is legally blind? What that means long term is not so clear.
In Ohio, services are provided at the home by the state, through the county of residence, until a child is three years old. Then the child is eligible for public preschool and it is there that services continue. Lyra is fortunate to have as her classroom teacher a vision impairment specialist. We have long heard that children with Down syndrome have strong visual memory but after raising two kids with severe dyslexia, I was not expecting Lyra to read before five as do many other children with Down syndrome, including our pediatrician’s daughter. Yet today Lyra recognizes and verbally identifies almost the entire alphabet, numbers one through nine, and at least five colors. For now, the letters and numbers she looks at are quite large, certainly not as small as the print in a typical children’s book, which leads to what comes next. When we recently saw Lyra’s ophthalmologist for the first time since her last contact lens was removed he was thrilled with her vision and said, “Somewhere between 12 and 18 months from now we will make the switch to bifocals. I want to wait a while because it’s a difficult transition, the kids fall a lot and it takes a while.” On the other hand, he also told me it would take two to three weeks for Lyra to adjust to glasses and that only took 24 hours.
Meanwhile, Lyra’s teacher is exposing her to braille and signed her up with a non-profit that sends us braille books every few months. The ones that are typical toddler books with clear braille stickers overlaid upon the text we keep at home. Others are simply white 8.5 x 11 pages covered with bumpy dots. We put those in Lyra’s backpack and send them to her teacher.
Like so many changes resisted in life due to fear of the unknown, I wish we had switched to glasses sooner than we did. We would have saved Lyra several traumatic contact lens changes. She still drops to the ground in an unfamiliar setting if she is unable to discern the topography of the ground or floor but otherwise seems to see as well as most other three year olds. An added benefit is her glasses have transition lenses, meaning they get dark when exposed to sunlight. In contacts, I could never get Lyra to “tolerate” sunglasses. Now sunglasses are just part of the package and she looks pretty cool.
The majority of the Down syndrome blogs are written by families whose child diagnosed with Ds is under the age of three. In an online group I belong to, mothers openly wonder why this is the case and what happens to families who have older children with Ds?
I’m pretty sure I know. People move on in life and after three years, having a child with Down syndrome is no longer a novelty. The news of an extra chromosome in a new baby has been digested, how T-21 manifests in an individual child (particularly in terms of any serious medical issues) has been observed and, finally, the remediation for baby’s particular needs has been identified and (ideally) implemented. Baby’s Ds has normalized within his or her family. And just as families do with every baby, whether a child is born with a diagnosis or not, the family resumes dealing with the normal complexities of life.
I’ve seen similar situations many times over. Homebirthers have a hard time detaching from the midwives who’ve just helped them have amazing births. Many of these new moms consider becoming midwives, but only a few do. I’ve known women who, having worked through breastfeeding challenges with their own babies, go on to become La Leche League leaders. But few continue in leadership roles long after their last child weans. When children become school age, some mothers become ardent advocates for particular types of education or homeschooling. But by the time the kids are in middle school, or certainly high school, parents often relax on education. Many homeschoolers start attending school, and children who are privately educated through elementary and middle school frequently attend public high schools. Intensely held positions melt away as the needs of children change. And, too, children find their own paths and must strike out with lessening assistance from their parents. Life, forever transitory, goes on.
Why I Write
I write because I am a writer. When prevented from writing for any length of time, I have a hard time sleeping because essays clutter my thoughts. When I was pregnant with Lyra, and had no idea the baby I was carrying had three 21st chromosomes, I began writing about my family. Oh, I’ve written about us before, an entire book, in fact. But this time, I began work on a series of essays and had several outlines in mind.
I also process life by writing, which is especially helpful with the harder stuff. My ex-husband, who throughout our marriage had tried to convince me that I was a chronic depressive and should, therefore, be unendingly grateful to have him in my life, told me some months after I left him how he envied my ability to figure things out by writing. Shortly thereafter, he stole my journal off of my computer and presented it to the divorce court as evidence that I was not mentally stable enough to have custody of our children. Leaving that marriage was scary business and, for the first year, I frequently questioned myself. I don’t know if the magistrate handling our divorce ever read my journal, but nothing came of it. Except further validating my decision to divorce.
Yes, writing essays about family became a different project than I had first envisioned because Lyra is a different child than we had anticipated. I write about our experience as we unpack our new lives, which now includes a daughter with Down syndrome and congenital cataracts.
Not Just a Down Syndrome Blog
As I routinely point out, and hopefully demonstrate, Whoopsie Piggle is a collection of essays about my family, of which Lyra, a child with Down syndrome, is one of five siblings. Certainly she is something of the star of the family, but in my experience, the babies in most families are the stars. If Lyra had merely 46 chromosomes would I know now what I do about Ds? No way. This first year with Lyra was like finding myself in a graduate program on Trisomy-21 and all the related medical, social and cultural issues. Writing what we have learned about our daughter, as well as Ds in general, again helps me process my life as it has now been redefined by my fifth child. And by being publicly available, perhaps it might help another mother, and her family, who discovers the baby she is carrying or just birthed has Down syndrome.
However, I have many essays living rent-free in my head like squatters that have little, if anything, to do with Lyra and her 47th chromosome. In the past year, I have written through our learning curve on Down syndrome, along with the medical challenges Lyra has faced. Now, a year after her birth, our family is a boat once again sure of its ballast. Which was also the case when my four older children had their first birthdays.
But before evicting those squatter essays onto the pages of Whoopsie Piggle, it seems appropriate to give Lyra a full blast of the spotlight.
Lyra’s Eyes—More Concerning than Down Syndrome
When I first held Lyra, I immediately noticed her eyes were “Downsy-shaped.” Shortly thereafter, I saw the ghostly pallor of her pupils. At an ophthalmologist’s office three days after her birth, we learned that Lyra had bilateral, congenital cataracts. We were referred to a second, pediatric, ophthalmologist, whom we saw that same day. He immediately scheduled surgical lensectomies for both of Lyra’s eyes.
Hanging around a pediatric ophthalmologist’s office as much as I have in the past year, where the waiting room is often filled with babies born with cataracts, one might easily assume congenital cataracts are common. They are not. Congenital cataracts occur in the United States (and the U.K.) in 3 to 4 out of 10,000 live births. That’s less than .4%, making it pretty rare. Though not considered a marker of Down syndrome, of the infants born with cataracts, the majority of them also have Down syndrome. But even within the Ds population, congenital cataracts are rare, effecting approximately 3% of babies born with Ds in the U.S.
Statistics Versus Reality or When the Number Is Yours
We feel very lucky—providentially, miraculously lucky—that Lyra was spared any of the heart defects commonly found in infants born with Down syndrome. However, for the first two months of her life, all Max and I could focus on were Lyra’s cataracts. Not her Down syndrome and the challenges it might present, but her blind eyes. Her cloudy lenses barred all images; only bright light gained access to her retinas. When she was a few weeks old, Lyra’s eyes started wandering waywardly in their sockets, never in tandem. Bereft of any visual input, the parts of Lyra’s brain that process vision remained unused. Left that way, those parts of her brain would have become effectively obsolete.
Lyra was six and seven weeks old when she had her lensectomies, first on her right eye, and then on her left. More than anything, I was anxious about Lyra having general anesthesia. At eight pounds, she was barely bigger than a bag of sugar. I did not cry when my midwife told me Lyra appeared to have Down syndrome, nor did I cry when genetic testing confirmed the diagnosis. But when a nurse took my six-week-old infant from my arms and walked her down a hallway to the surgical suite, Max and I stood watching until the doors closed. And then I turned into Max’s arms and wept, my sternum burning like I’d just run up a long hill. Please don’t let her die.
Five hours later, we were home where Lyra quickly recuperated. Because everything went so smoothly, the second surgery, exactly a week later, was not nearly as emotional. Soon after her lensectomies, Lyra began wearing specialized contact lenses and, as I described in “Lyra’s Eyes” so too began the bimonthly torture events otherwise known as lens changing appointments. Still too young to understand that contact lenses give her vision and should therefore be tolerated, if not welcomed, Lyra has only improved her fighting techniques. I walk into the exam room with a baby who momentarily transforms into an eel—slick with sweat and strong enough to twist in all directions. Lyra also uses the small openings of her eyes, a Ds marker, as one of her tactics. She shuts them so hard in these appointments that her upper lid sometimes turns inside out. An optical speculum is absolutely required. As are three people.
After a year of successful contact wearing, I noticed one day in August that the contact in Lyra’s right eye was missing. We were in the Green Mountains of Vermont (read: far away from specialized pediatric ophthalmologists), where we’d just arrived for a two week vacation. Lyra’s right eye is the one with an elongated pupil, part of her iris having been nicked off during the lensectomy. Without the familiar bubble of an aphakic contact lens, Lyra’s pupil looked different, prettier even, or maybe just more normal, to me. I felt like I was seeing her sighted eye for the first time. With her lenses in, I am reminded of the band director I had my sophomore year of high school who wore glasses with a very strong bifocal correction. His eyes looked odd due to the magnification. When he took off his glasses, usually to rub his temples after trying to teach us a new piece of classical music, he looked normal.
“You know she won’t have to wear these lenses much longer,” said Lyra’s ophthalmologist when we returned home and I told him about the appearance of her lens-less eye. “When her eye is big enough, we can get her into a different lens without that big silicon bubble, I might even be able to fit her in them in the next few months. We’ll see.”
A few days after her missing lens was replaced, Lyra removed the lenses from both her eyes. Astronomically expensive ($500+/pair), we searched but only found one. As a result we have:
Figured out how she takes them out. She puts her third finger in her mouth and her forefinger at the outer corner of her eye and pushes. We now remove her hand from her face whenever we see her doing this.
Purchased, as back up, glasses with the tiniest frames and the thickest lenses.
Been told by her eye surgeon that the new lenses without the thick silicon bubble are also smaller in diameter and, as a result, will suction more securely onto her eyeballs. He has ordered her first pair.
Seeing Clear and Straight
After her lensectomies and with her aphakic contact lenses, Lyra became a sighted child and her brain has developed as such. She looks towards sounds she hears or at people, animals and toys she wants. Soon after the lensectomies, Lyra’s right eye dominated her left, although both eyes regularly crossed inwardly, towards her nose. We patched the right eye for months, with little impact other than to irritate the skin around her eye.
The medical term for crossed eyes is strabismus and is based on the Greek word for “squint.” I learned this after I described to the surgeon how Lyra sometimes squeezes one eye shut while scrunching up the same side of her face. Many people who see her do this make Popeye references and more than a few have quoted the comic sailor man. I’m afraid we all laugh. Poor kid.
“We aren’t sure why kids with strabismus squint, but the best guess is that it helps them to focus,” Lyra’s eye surgeon told me in June. “I think we’ve done all we can with the patching. I’d like to schedule surgery to correct both of them.”
“Will this improve her vision, I mean, won’t that give her depth perception?” I’d heard from physical therapists that following surgeries for crossed eyes, kids often had big leaps in motor skills and coordination. I assumed this was due depth perception, which doesn’t develop when the eyes do not track in tandem.
“Yeah, well, she’ll have about a 25% chance of developing depth perception,” he said.
“Twenty-five percent? That’s pretty low!”
“I know. It’s only 50% in typical kids, no matter how young we operate. Sometimes it develops and sometimes it doesn’t but it’s half as likely with the Down syndrome. Still, you are going to see a big improvement in her vision. She’ll have a larger field of vision and things will make more sense to her.”
Eye Surgeries 3 & 4
The morning after her first birthday, both of Lyra’s eyes underwent muscle surgery to correct them from crossing. Knowing the operations were much less complicated than her lensectomies had been, I felt relaxed as we checked in at the hospital, visited amiably with the staff, Lyra’s surgeon and the anesthesiologist. But when the surgical nurse came to take Lyra from my arms, my throat felt strangled and once again Max and I held each other while watching a stranger walk down the hallway to the surgery suite with our now fifteen pound baby. Three bags of sugar and general anesthesia.
In the recovery room, I sucked my breath in when Lyra opened her eyes. With last year’s lensectomies, we couldn’t see the incisions because they were made on the backside of her eyes. But with the strabismus surgeries, red valleys rippled the once smooth, white surfaces between her nose and irises. The incisions looked like they had been made with a bread knife as the edges were not straight lines, but like the bric-a-brac trim stitched to the edge of Raggedy Ann’s apron.
For more than a week, Lyra’s eyes remained a gruesome sight, however, her vision improved immediately. A month later, Lyra does many things she didn’t do before, which we attribute to better vision. She suddenly developed “separation anxiety” and is no longer content being held by others when her father or I are nearby. She leans in our direction, looks at us and fusses while reaching for us with her arms. When playing on the floor, Lyra now raises her arms for me to pick her up whenever I am close to her. But she also sits for long periods of time playing with toys that are placed within her reach. She reaches farther ever day. And pivots more. Under the tutelage of physical therapists, we are teaching Lyra to go from sitting to lying down and vice versa. Crawling is coming.
When I have my contact lenses in, I can see very well. But if I cross one of my eyes (I can cross each of my eyes independently, impressing even Lyra’s ophthalmologist), where I should see one image I see two overlapping images. It’s terribly confusing, for which is the real item and which is the phantom double? Depth perception or not, seeing straight is certainly an improvement over seeing double.
The other thing, which may sound somewhat inappropriate, is Lyra looks better—the aspect of her face is surprisingly different with her eyes working in tandem. Is that because it is more normal? Perhaps. Do I love her any differently? Of course not.
What, More? More Lyra! At Least a Wee Bit More…
Before her hypothyroidism diagnosis, Lyra’s extremely slow growth rate was very concerning. She gained just two pounds in her first three months of life. So when Lyra had a growth spurt shortly after she began taking Synthroid, everyone was relieved and felt the problem was solved. However, at her 12-month well-baby visit, Lyra weighed 15 pounds even, only one pound more than she had three months earlier. Were she a typical baby, she’d have weighed almost 23 pounds by her first birthday as most babies grow two and a half times their weight in the first year and Lyra was seven pounds, ten ounces at birth.
“She’s slowing down again,” said Lyra’s pediatrician, Dr. M. “Her head measurement is really good, 75 percentile in the Down’s chart, but her height and weight have gone down in percentile since her 9-month visit.”
We talked about it. Lyra is still exclusively breastfed. Like many breastfed babies, my older boys all grew rapidly until they were about six months old. After that, they stopped putting on weight. Still, they also continued to grow in length, like pulled taffy I used to say. Lyra is not. In the end, Dr. M and I decided, well, nothing. As her brain size is not a concern, for now we’ll just keep monitoring the rest of Lyra’s growth.
Poop, Poop, Poop or The Miracle of Fruit-Eze™
WordPress lays an array of statistics in front of my eyes each day. Not only how many views I’ve had, but also the countries where Whoopsie Piggle has been read (over 40 so far, in all continents except Antarctica), and even the search terms used to find the site. Poop, it turns out, is pretty popular. Or, rather, searching for solutions to infant constipation is. Hundreds of hits on WP have been related to this issue.
At the National Down Syndrome Congress convention last July, Max and I attended a session led by the director of the Boston Children’s Hospital Down Syndrome Program on healthcare guidelines for children under the age of five. Constipation merited its own slide in her PowerPoint presentation, as it is such a common problem in the Down syndrome population where even at the cellular level, excretion is not as efficient as it is in the typical population. I once believed the underlying culprit for Lyra’s pernicious constipation was her hypothyroidism. But in a discussion with a scientist at the convention who was studying autoimmune disorders, I was told that even before she began pharmaceutical therapy, Lyra’s thyroid levels would not have caused her constipation. It seems the cause of Lyra’s constipation is simply her Down syndrome.
Given its pervasiveness, I’m surprised that more information is not readily available on how to address constipation without using laxatives. Many people with Down syndrome regularly take a product called Miralax, but it’s not considered safe for long-term use, something the Boston doctor mentioned in her talk. She then went on to tout the benefits of a diet high in fiber and an all-natural product called Fruit-Eze.(Yes, that’s purple and a link. If I could make lights blink around the name like an old-fashioned movie marquis, I would do that, too, I’m just so thrilled with this product.)
As far as I am concerned, that one tip merited all the exhausting travel and expense of attending last summer’s conference in Denver for I am here to sing the testimonial praises of Fruit-Eze. It is nothing more than a sweet jam of prunes, dates and raisins mixed with prune juice. Spread it on toast, mix it in baby food, eat it by the spoonful! Within days of giving Lyra two small spoonfuls in her food, one in the morning and one in the evening, we have been delightfully surprised to find stools in her diaper, sometimes twice daily! And no longer does she announcing their arrival with plaintive cries of pain because the poo is soft.
At $26 + shipping for a 32 ounce jar, Fruit-Eze is pricey, but well worth every penny. It is not at all hyperbole to say that Fruit-Eze has changed our lives.
The New Normal
A family of five children, the oldest is nineteen and the youngest is one. The oldest is off in his second year of college at the University of Michigan, living in a co-op where he cooks dinner once a week for 52 people and is learning how easy it is to cut the fingers of your left hand when chopping so many vegetables while back at home, the youngest complains as she cuts five teeth at once.
The second oldest continues to find romance as the primary inspiration for his song writing, which he practices All The Time on the sexy new guitar he purchased with the money he made over the summer at Old Carolina Barbeque, while his sister sits on the carpet next to him, mesmerized by all music, but especially the songs of her brother.
The third boy, so long the youngest, officially now the middle child, acts like a firstborn around his younger siblings, caring for them like a mini-me, his sister often found in his arms and most nights while I get dinner on, he feeds her, this boy who, like all mine do at 13, now grows as fast as corn on the white summer nights in Alaska, the fleeting traces of boyhood dissolving as he becomes lantern-jawed and long limbed like his older brothers and, just as they did at 13, this boy has stood up to his father and found, as did they, that there is no room in that relationship for any voices except one and now he must process why his father has abandoned him, too, when all he wanted was to be seen and heard, just like anyone else and it is all so much for a young man/boy but he is resilient, with brothers who guide him down the path they each traveled not long ago.
The last boy is also off to school, going all five days to the Waldorf school and he tells us he loves his sister, he loves her, he loves her and he can’t stop taking her ears in his hands and squeezing them even though we’ve told him so many times to Never Touch Her Ears and even though doing so means his sister can reach his long hair and pull it, which she always does because she loves pulling hair, especially her brother’s hair because he screams when she does and she has him right there in her lap, he doesn’t move lest she pull harder but he screams until someone extricates her fingers from his flaxen locks, which his dada refuses to cut because it is like a golden halo that floats around his face as he runs, runs, runs in the park-like yard, taking his pants down to pee in the grass, throwing dirt in the fish pond, digging in the sandbox, spraying everyone who comes close with the hose and when he falls asleep his muscles lose all tension and his head sweats just like the music brother’s head did when he was a boy, the music brother who announced when the littlest brother was still in the womb that “he will be like me and I shall raise him in my own image and I will call him Leif” and it was so.
Just a Child
I have a friend whose mother is from Japan. My friend once told me she did not hear her mother’s accent, which I thought was quite pronounced. Oh, she knew her mother had an accent. But in daily life, her mother is her mother, not her Japanese mother, whose voice she has listened to since the nautical days of earliest life.
We are always aware that Lyra has Down syndrome. We see it in her eyes and the manner in which she develops. But Lyra is no more our Down syndrome daughter than my friend’s mother is her Japanese mother; she is simply our daughter. Our fifth child. Her brothers’ sister. Who happens to live in the rich milieu that is this family, that is Whoopsie Piggle.