back to school week

…is officially behind us and it’s been a busy one for the Sistred. They each have big changes coming this fall and being the happy little nerds that we are- we’re excited!

Zuzu has finished up her first summer of daycamp. She attended the same facility that she always has but for her age group the summer includes additional outings and activities during the week. Last spring, shortly after we told Zuzu that she was officially signed up for her “camp”. She started fretting over where she had stored her sleeping bag. When I asked why she responded with a, “For camp of course!” We tried to explain that she was not now going to be sleeping over there and in fact she was really just going to be doing more activities with the same teachers and kids without quelching her excitement. Always a balance with her. She had fun though- her first time rollar skating, blackberry picking, she saw a couple movies in theaters (a rare treat in our house due to their ages even though I’m generally happy to see whatever as long as I have a kiddy-cup-combo for myself!), a few rounds of bowling and twice a week water days.  She even got invited to the birthday party of a fellow camper who was turning 12. Once we squeezed in a second week of swim lessons,  let’s just say the girl’s summer was made.

So on to first grade. She admitted she was a bit nervous and checked a couple of times to be sure that we were not going to follow her kindergarten teacher’s explicit end of the year instructions to purchase walkie-talkies so that she could be kept in the loop and at the ready for whatever that teacher needed since rumor had it that her new students were much younger and wouldn’t know half as much as Zuzu’s class. There are some days that Zuzu’s literalness gets the best of her. She was most definitely willing to lend a helping directive or two to the new class. The fact that the teacher that puts the kind in kindergarten sent her a “wish you were here” postcard over the summer probably just cemented the seriousness of those instructions to her.

The other major concern for our rising first grader was  the subject of binders. She had *heard* that certain first grade teachers provided binders and that first graders were to keep track of these. She wondered often and at great length about whether or not she would need to purchase a binder, would it be provided or was the binder a teacher specific issue. When we attended Meet the Teacher a couple of weeks ago, she was absolutely thrilled to see a binder all shiny and filled on the class tables- one for each and every student. The binders contain the homework for the year. It’s an interesting system, pretty different from last year. So for Miss J’s class the year’s focus is to get a good foundation in reading and writing, so Zuzu is to read for 15 minutes each day. Then in said binder is a section for “reader reaction”, spelling games and math games. They are to complete one activity of their choosing from each category each week. There are also some baggy books that come home once a week to practice reading. Being the happy little nerds that we are, Zuzu in all her binder-exuberance dove right in and completed two homework assigments even before the first day of class. I have to say I had to squelch my spoil-sport-I’m-tired-I’m-overwhelmed-I-probably-should-have-weaned-the-baby-before-now-so-I-don’t-have-another-human-being-attached-to-me-on-school-nights- I-have-too-much-to-do-just-now-reaction.

And I did.

I know a lot of people have differing opinions on the value of homework, but right now I have a kid who is excited about it- so I’m going with that.

It’s this funny balance of practical magic that blends its way into Zuzu’s personality that amost always surprises me in the moment and then after the fact I find myself nodding along and thinking, “That’s about right.” The binder joy was not unlike the way she organizes her “facts, rules and routines” along the lines of “writing, not a wishlist/letter to Santa in, but rather placing a rather detailed, terribly specific order; that TJ the Elf must have a very good reason for not having landed in a new spot the next day from where she last saw him the night before; that the Tooth Fairy has made a big mess with glitter like they use at school all over her bed-it’s not fairy dust Mom and that the rascally leprechaun that left green footprints on our kitchen table leading up to the “That’s not gold, it’s chocolate coinsin foil wrappers Mom” in March had gotten into the paint left out on the front porch after her and her sister’s were done painting the day before, rather than being willing to believe he is just green and was barefoot when he left a pile of loot straight out of that pot of gold at the end of the rainbow. She was more excited over the homework binder than the magic spell packet the teacher had made for each child that indicated once they squeezed the playdough and repeated the rhyme if it turned another color, they were certain to have good luck for the year. Mind you, she believed enough to locate a packet that was in her signature color of pink and to work the dough thoroughly enough until she was certain it showed enough of the good luck magic and then excited enough about it to pack it in her backpack to show Miss J her good fortune, but she did all of this while still chattering on about the best spot at home to keep her binder in so that the littles wouldn’t get into the ever-important First Grade Work. I love that kid. We all do.

At daycare they have a homework time and last year I forwarded the class newsletter on to school and homework was completed there. This year I’m not entirely sure what I want to do. I want the binder kept at home so I think we’ll send books to school and have her just focus on reading while she is there and the actual activities we’ll save for home.

The Quail is set for public and private 4k now as well. She started private last week and public starts today. Private feels easy-peasy- we love Miss J and she and the afternoon teacher Miss A are fairly familar with the Quail already. There is also another little friend in her afternoon class who will be attending k4 in the afternoon so it is good she’ll have a buddy when the big school bus comes to pick them up there for afternoon school.

This year’s Meet the Teacher night was cathartic for me. I think a bit for the Quail too since we caught her literally twirling through the halls. Last year I was completely overwhelmed by all that had to be done going to one of them. Aside from meeting the teacher, it was a new building, paying the cafeteria for lunches, a car rider line to get tags, a bus line to find out that our bus wasn’t what they meant, a school packet line, a PTA line, a Girl Scout sign-up line, volunteer training and all during the witching hours with 3 hungry, tired and over-stimulated kids.

Times two.

 Because the Quail was attending the school that had the self-contained classroom, in a town 10 miles away. 

Needless to say we didn’t get everything done and on the way home when Zuzu innocently questioned why we weren’t able to spend as much time at the Quail’s school as her own and why couldn’t the Quail just go to her school to make it easier, I found myself turning up the radio and adjusting the rearview mirror so they wouldn’t have to directly witness how very much I agreed with them.

This year, I intended to be prepared.

One school.

Two kids.

No standing in unnecessary lines.

And possibly Girl Scouts, if a local troop can get together.

We planned to pull in at 2:45, 15 minutes early, childless to get all the lines  and training done efficiently, then run out to pick up the kiddos and bring them back for the fun- actual meeting of the teachers portion of “Meet the teachers”. We pulled up, maybe 5 minutes later than intended- to what can only rival a Who concert.

Lines.Out.The.Door. Wow.

And we forgot to bring the school supplies to drop off. Other than that, it was old hat. Not overwhelming. And frankly good to get to spy so many of our friends and neighbors- exactly the reason why you want your children to go to their homeschool.

So we finished up. It was nice to see the girl’s rooms, both were excited over the little house/kitchen centers that would be part of their day and of course we went down the hall to say a quick hello to our kind kindergarten teachers while we were there than ran off for a celebratory burrito! When she started to joke with Zuzu over helping to teach these new kiddos what all goes on I cut her off with a funny little story of repeated requests to purchase walkie-talkies.

In the weeks leading up to school we managed to fit in a couple of parent-single child lunches with the girls and a trip to our favorite “Big Sale” as Zuzu calls it for back-to-school clothes. And once again I felt oh-so-in-the-know. Growing up, picking out sweaters and jeans and tennies for back to school and then stopping off for a shared cup of cheese fries is one of my happiest memories with my Mom. Last year when I started early trying to create this tradition we were faced with left over, neon, stringy, clearanced summer duds at our usual shopping haunts. This year we skipped the lure of no taxes and held out till the next large-scale consignment sale with the promise of a Panera Breakfast treat and a run through the Halloween Costume rack to see what the options might be AFTER finding our favorite winter jackets, fall vests and a suitable amount of legging/tunic top/dress and tiger wear to carry us into the spring.

Last year the night before classes started we read, The Night Before Kindergarten, The Night Before Preschool & The Kissing Hand, luckily even with our distinct lack of household organization we were able to locate them this year too. Zuzu was a little sad to realize we hadn’t purchased The Night Before First Grade, and I have to admit I was too. I have a feeling I did and lost it over the summer, clutter purging  time will tell.

And the littlest Sistred, well she started her preschool lessons. She moved into the Toddler room and is making herself at home with circle time, playground time, lunch-at-big-kid-tables time and now-I-nap-on-a-mat-like-a-big-kid time. She’s happy to go and happy to be picked up, if not a tad grouchier tired from her busy days. When she and the Quail received their welcome to the next class postcards from their upcoming teachers they were equally tickled.

The Quail also had a home visit from our public school k4 teacher and assistant. I had big plans for this visit- we had blackberries from a recent berry-picking expedition and I thought we might make a cobbler to welcome them and make the house smell homey the night before. Neat in theory, impractical for middle of the week. As it was we managed to take the trash out, put the dishes away and hide the week’s wash from public view. All in all, a good visit.  And we’re excited to start the new year.

I had a dress with apples for Zuzu’s first day, but being the Fashionista that she is, it got the thumbs down and a combination of twinkle-toes, stripes and more stripes won out. The Quail chose Zuzu’s graduation dress to wear to school for her first day today. She smiled her brave smile and carried her Dora Backpack to the car leading the way for her little sister. I’ve purposely not called to see how it went. Her getting off to school on the bus, today that is.

I’m cool.

It’s cool.

But Lovey just called as I was typing this and asked if I had heard anything and said he was thinking he might call the daycare and check in to see how her getting on the bus went anyway.

And that’s cool.

Oh, and it went smooth.

five minute friday: last

…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.


Dear Sugarplum, she is the last. The tiniest and most intentional of our dear ones. We didn’t know if or when she would come. We thought maybe our Quail would fill that role of baby in our heart and homes. I made peace with this. I ruminated while putting on socks and shoes and changing diapers over the pros and cons of adding on and into our already bursting to full days. And then the pressure let up. No more pumping, no more nursing, no more daily illness and breathing treatments. She walked. She started to talk. The sisters they played together the best of friends- their giggles and tumbles heard throughout their days. Where once they held hands while nursing, they now moved on to holding hands through playground fences and our days filled a regular but routine pattern. And it felt manageable. Ordinary even.

Then one day at an appointment where we opened our calendars to write in a date and time for open heart surgery; instead, the good word that there would be no surgery in our Quail’s future came as a gift from above. No opening of her heart.  That small fact alone opened our own, the trickle and twinkle of a thought that well, just maybe we could welcome one more into our lives. And so we did, that month we made the decision to have another. And 10 months later she came. Her birth, her pregnancy the easiest and yet most traumatic of them all. The room it filled with misunderstanding as I pushed and contracted. Somewhere in the trail of paperwork a note was sent that we were welcoming a second child that would also have Down syndrome like our Quail. Suddenly my world shifted through pain and pushes and dropping blood pressures. I knew this wasn’t the case but in the middle of all of this it was hard to know what was true and what might come. I labored on with insistence to these nurses that filled the small space of this birth. I knew who my children were despite what they read on a chart. My dear doctor, she came in and as we pressed on into the last bit of delivery she stopped me and made us wait. The cord it was tight. Coiled around this dear girl of ours. She pushed back against my pushes and rearranged this young life so that she could take her own deep breaths. That moment when I expected her wail to spread out between us came and passed. Silence instead. Just as piercing that empty sound was. We waited with baited breath for her own first one- and then, after the questions hung between us she wailed and I cried. She was going to be fine.

At last.

Our last.

Our Ordinary After.


It’s Buddy Walk Time! Click here to learn more & donate on behalf of our dear Quail!

Our family is joining in our local community to walk in support of and advocate for individuals with Down syndrome! We hope that through education, inclusion and advocacy the world that surrounds our dear one will be able to see the beauty and gift of a girl that we see. The Quail is 4 years old now. She continues to blossom as a most excellent big and little sister. She currently attends both private and public school. In her free time she loves to run, play with her sisters and help her family out. Wherever her sisters are- she’s right there in the thick of it! We love her so!

Thank you for supporting her and our family. Last year through your love, support and dollars we raised over $600. The impact of each and every one of those dollars however, is priceless.Those of you that work with me will have an opportunity to donate through SCVR’s infamous $5 Jeans Day Fundraisers statewide. We were honored to have our charity chosen by the SCVR Commissioner for Friday September 13th  and very much appreciate this opportunity to raise awareness and support. The local Buddy Walk in Greenville, SC will be held on the campus of Greenville Technical College on the afternoon of Sunday October 6th. Please feel free to join us for a beautiful day of fun, fellowship and advocacy! To learn more and register click here. We would love to see you and your loved ones there!

The NDSS works hard to raise awareness and create opportunities for the 400,000 plus individuals with Down syndrome living in the US and their families. Together with the NDSS & the Down Syndrome Family Alliance of Greenville, we envision a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their dreams and become active, valued members of their communities.

Click to learn more about the Down Syndrome Family Alliance, the Buddy Walk Fundraiser and the National Down Syndrome Society .

If you would like to donate on behalf of our Quail, please click here!

13 years…..

 Oh goodness me. Lovey & I were married 13 years ago. It seems like forever ago and yet just the other day. It was a wonderful wedding. Lovely with friends and family and food and fun. I still grin ear to ear when I reminisce over the pictures of our sweet day. It. was. perfect.

And now, 13 years, a sweet if slightly off-kilter two-gabled house in the foothills of the Blue Ridge Mountains, 3 dear girls and many, many happy memories to feather our nest later we had a lovely celebration thanks to our Zuzu who asked a few weeks ago if they could have a babysitter sometime soon, maybe for our Anniversary. Well- what a brilliant idea! We made reservations for the weekend before the actual date at this restaurant and the meal was just as lovely as we had pictured after drooling over the menu.

We are so blessed.


DSC_38931. watching the baby treat the glowworm like her own baby

2. Sugarplum’s pulling down a boppy and blankie and dragging it over to me to nurse just about anytime I sit down at the computer.

3. realizing Zuzu and I have the same eyes down to the hazel mixed in with the blue

4. bad mood’s passing

5. Zuzu’s request to go surprise Daddy with a breakfast treat

6. Dinners with Lovey

7. back to school night for 2!

8, a VSD almost closed

9. a doctor’s reassurance that we are out of the risk of need for open heart surgery

10. a gallon of figs!

11. dinner reservations

12. a salad of avocado, bacon, egg, mozzerella & arugala

13. a  nursing toddler

14. a nursing toddler sleeping through the night

15. kind words

16. new teachers

17. homework binders

18. a 6 year old’s excitement to get started on their homework before school even starts

19. non-disability families getting involved and learning about the disability community

20. end of summer swim lessons

21.  Welcome to the new class letters in the mail

five minute friday: small

…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.


First she was small and it was big. At least bigger than not existing. This hole, this tiny absense of tissue that once spanned a mere 2-3 mm of space in the center of her heart shouldn’t have existed. A VSD. A tiny missing piece at the very core of her.

That’s what people see and assume when they see her, when they hear about her, when they read about her- that’s she is missing something. Both in her genetic make-up and in her understanding of the world.

But that’s not true. That’s not what Down syndrome is or what it means. She isn’t missing part of her brain, her chromosomes, her understanding, herself. She’s all there and a little bit extra. A little extra genetic material on that infamous Twenty-first chromosome. How it impacts her, how we understand that it impacts her, that is changing. We used to think people like her shouldn’t exist. They should be locked away. Given away. Terminated. An example of an error on the part of nature and God. Slowly, person by person the world is coming to understand that, that “fact” just isn’t the case.  Her existence is not imcompatable with life. It’s quite the opposite. This dear girl, she’s a person, a human being who thinks, learns, understands and acts with choice and free will just as any other human being. She just needs to do it in a little different fashion than other people. In her own way In small ways she is different, yes. But in the big ways, when we take the time to get to know her we find out that those differences don’t have to be big. It’s us that choose to see her that way, not her. That when she and people like her are given the same care and attention that any other human would, that they have the same potential to grow.

To grow like the tissue in the center of her heart has over the last 4 years. Now, that absense of tissue, that space, it’s miniscule. About the width of two hairs according to the doctor as of yesterday.

“She has no restrictions. Don’t limit her.” is our new prognosis.

I have to agree. We won’t, in big ways and small.

Now the differences are small, now that she’s big.


Tooth Fairy Time

Our rising first grader spent her Kindergarten year hoping to lose a tooth at school. You see her friends had done it and when the tooth came out at school they got a visit to the nurse who gifted them a little tooth necklace to deliver their prize home to their parents and The tooth fairy home to. So really, for Zuzu, it was all about getting that necklace. One day she was so determined that she spent recess convincing her BFF to use a paper towel and twist it out for her. This coming from the girl who flinches during nail clippings, screams while her hair is being brushed and used to require a parent to sit on her in order to get her toddler self’s teeth brushed.

But see there was that necklace. She reported back to her teacher at the end of recess with a handful of bloody paper towel and a loose tooth and earned her visit to the nurse. Unfortunately for her, the effort wasn’t quite enough. The nurse would not pull it out, just store it if it came out on its own. By the time I picked her up from after-school and she relayed this story the tooth was perpendicular to its mates.

So began our family’s tradition of outting loose teeth with popsicles. Of course the Sistred are more than happy to join in and eat popsicles in solidarity with Zuzu, loving bunch that they are.

Personally I had no desire to pull out the tooth myself. I remain shocked at her insistence that we help her with each loose one. The look on Lovey’s face as he witnesses her little bloody antics is enough to know he isn’t going to do it either.

So she slowly bites into a popsicle with the though that the cold and biting will enable her gums to numb up a bit as the tooth is wedged down into the ice. And if nothing else, there is the distraction of Momma having handed out popsicles!  Once she’s made her way part through the popsicle I’ve twisted it for her and if it comes out easily she’s good to go. If it doesn’t than back to the drawing board the next night with the possibility of it coming out in school and earning her a necklace.

She’s lost 4 now. The front four and 3 of the grown-up teeth have started to push on through. Our family’s tooth fairy has been waiting for this since she was a little tike. We had purchased a yellow, ladybug covered tooth pillow during a trip to Asheville shortly after she turned one. The first time I was worried the tooth might slip out so we put it in a tiny little bag in the pocket. The next time she actually asked if she just put it in the pocket like a regular kid does. Our tooth fairy leaves gold coins and sprinkles glitter over the sleeping girls. Zuzu has a love/hate relationship with this. She complains about the mess of the glitter, but also refuses to have it brushed out of her hair. Since the Quail and her are sharing a bed, they both go off to school all sparkely for a good few days.

When Zuzu lost her second tooth she got it in her head that she wanted her gold coin AND her tooth. I tried to tell her that wasn’t how it worked, but what do I know according to her six-year-old mind. So our compromise was for her to write the tooth fairy a note and let her answer for her own fairied self. Interestingly the answer was no.

So she heads off in to first grade having grown her third row of molars in and having lost and partially regrown her front four teeth. Ever the eager beaver to take another shot at the school’s coveted necklace treasure!


DSC_49151. The Happy Berry

2. pictures of blueberries

3. fresh corn

4. sauce of avocado, sour cream, lime, milk and S&P to taste

5. a busy weekend

6. children playing in splashing water

7. Zuzu making a new friend

8. school supply shopping

9. DSFA- Greenville

10. work lunches!

11. work birthday cakes!

12. editing time

13. Lovey

14. fresh blueberry cobbler, the next day

15. Netflix

16. thin liquids and the ability to swallow them!

17. cafeteria food dates with Lovey & the Quail

18. a 6 year old’s excitement at a birthday party invitation

19. the morning light in Panera

20. strangers stopping to comment on our girls in a kind way

21. hand-me-downs!

News that’s a little easier to swallow….

Soooooo many things I want to say about this wonder-kid of ours. And then I get overwhelmed with trying to say it artfully or at least coherently and then someone comes and asks for a drink, someone falls down, someone gets their toy taken away, it’s time to go to bed, to work, to eat, to clean…etc…anyway.

Before I lose the general gist of today’s swallow study results, let me mark them down for posterity. We have seen so many fabulous speech therapists over the years that have helped us from a variety of perspectives understand the logistics of what goes into safely eating and drinking since the Quail was a few months old.

Shortly after the Quail was born and all the extra pokes and prods receded along with the delivery room lights; we settled into our room with the required dozen or so pillows to prop ourselves up and begin our nursing career. At the time we didn’t have any idea all that lay ahead of us. We only knew that there was a chance she had Down syndrome and that breastfeeding might be a challenge. We knew that teaching Zuzu to nurse had been difficult in the early weeks as well though and figured we’d master it with the help of our trusty Lactation Consultant. There was such a feeling of love and amazement between Lovey, her and I as this sleepy little baby rested in my arms with her dark swirls of hair and her chipmunk cheeks working the moment I lifted her to me. What a miracle a new baby nursing is to see.

In those early weeks that followed as I tried to nurse her, milk would pour out of the side of her mouth. She had difficulty pulling any milk out and I would often leave a nursing session as or more engorged as we went into it. We started with the usual help. We went back to our super-hero lactation consultant who had taught me how to nurse when Zuzu was a babe, and did a couple feed and weighs, which only quantified what we suspected- that she was barely pulling anything out of me. After 20 minutes, the most was ¾ of an ounce. We tried the nipple shield, different positions, an SNS, massage while nursing. Really, we went the distance, until the LC finally said she couldn’t really do anything else to help us, we had gone through her bag of tricks. So back we went to our EI and pediatrician for a referral to a feeding specialist. While the new SLP was kindhearted- my best guess is that the combination of the Quail’s heart-defect coupled with her inability to pull milk out of the breast overwhelmed her, and her first priority was to get milk safely into the baby. So she helped us with bottle-feeding, confirming that this act wasn’t stressing or taxing the Quail’s heart or system. Yet, still milk ran out of her mouth, she threw up multiple times a day and she fought me like the dickens most times I put her to my breast. We asked around and found another feeding expert who was trained by Sara Rosenfeld Johnson in oral-motor strengthening and placement and I called to explain our situation and ask if she thought she might have anything else to add to our repertoire. The Quail was 5 months old at this point and we still hoped to learn to nurse. We started feeding therapy to teach us to nurse and strengthen the Quail’s oral musculature twice weekly. In the meantime Zuzu, ever the wonder-nurser, gave probably the best gift she ever could to her sister, she happily continued to nurse and keep up my supply so that I could pump and we could bottle-feed the Quail with it.

We spent August through November of 2009, with regular feeding therapy and a hit and miss success rate, one time we’d nurse and the feed and weigh would show she had taken in 4 ounces only to have her then throw up 3 of them and then the next time she would fight the entire session with every position, exercise and accommodation. I still remember with a huge feeling of gratitude the last nursing session with our therapist where the Quail settled in and nursed like there had never been any issue and Kathy writing the word, “Beautiful” on a note and silently passing it over to me. I had left there that day full of hope .

Then one day in November, we hit a wall. For the last week, every single nursing session had been met with tears and frustration, on both of our parts. It had become a matter of course that I would bark at Zuzu whenever she came bursting into the room while we were trying to nurse. What had started out as a sweet bonding time amongst the three of us, had devolved into anger, sadness and frustration for all of us. It was time to let the nursing go. Fortunately, Zuzu still happily kept nursing at bedtime so between her and my pump I was able to provide milk to the Quail with all it’s benefits for 15 months.

Around the time she turned one, our therapists office staffed her case and an SLP who was not actively apart of our team made the recommendation to get a swallow study and Upper GI done to see if there were any physical reason for the daily throwing up since she showed no signs of outgrowing the reflux as we would have expected by a year. So we did. And there was. She had a duodenal stenosis that involved a web covering over that portion of her intestine and left an opening the size of the writing tip of a pen for her to push her food through. Most food stayed in her esophagus, expanding it like a water balloon, until she was able to apply enough pressure and push the pureed food through the pin-prick of an opening. It also meant that any solid pieces of food mixed in her purees stayed there until she threw it up. Surgery was scheduled and the web covering removed and the throwing up reduced to plain,old run-of-the-mill reflux. She stayed on Prevacid and continued to throw up, but really, it was more positional and only a time or two a day. Since she had always continued to grow well; well- “well” that is for a child with Down syndrome  and a VSD, no one had been concerned about the frequency of her reflux since it could easily be attributed to her low tone.

The first swallow study also showed that our child who had been through RSV, the flu, pneumonia, two bouts of bronchiolitis and two hospital stays in the previous 6 months needed honey thickened liquids in order to prevent aspiration. What was found was micro aspiration, which we were told we were lucky what was aspirated was breast milk as any other substance, including water being aspirated in her lungs could have resulted in her being even more sick. While it was hard to say what the exact cause of her previous season of illness was due to, suspects included- her VSD, being in a daycare setting, just bad luck catching the flu and an unfortunate delay in receiving her RSV vaccination due to insurance paperwork snafus. And now the complication of her aspirating on thin liquids added to the puzzle as well.

In the meantime, we continued to meet with Sara Rosenfeld Johnson when she came through town with her travel clinics and work with our private speech therapist on her oral-motor exercises multiple times a day. At one point in the next year the reflux seemed to increase again so we scheduled another swallow study and Upper GI to see if perhaps scar tissue had formed or if there was a new issue. This time the Upper GI showed a congenital malformation lower in her intestines and showed a slowing of her stomach’s ability to empty. We were told that if we weren’t able to get the reflux under control we might need to go to a more serious medical management plan in order to keep her healthy, either stronger drugs to help speed up the delay of food passing through her system or the possibility of a feeding tube. The dose of Prevacid was upped but the liquids could now be thickened only to nectar consistency and the amount of food offered at one time became carefully portioned. Eventually we were able to see an improvement both in her ability to manage her liquids and food and her general health.

We did one more swallow study 6 months later, hoping for even more improvement and a reprieve from the thickened liquids altogether.  This time, the news was worse and we needed to move the thickening back up to honey consistency. It was disappointing to say the least. The SLP, Dru, who does the studies explained that each time the Quail experienced a growth spurt, it would be like getting a new set of equipment that she would have to learn to use all over again and that we couldn’t really expect to do any active exercise to remove this issue until she was at least cognitively 12 years old, due to the complexity of trying to explain what she needed to do to her. In the meantime, we needed to continue thickening and following the straw cup protocol that we had been doing and probably there was no need to come back every 6 months.

So life went on and we reached our new normal of always mixing, bringing or sending along thickened liquids wherever the Quail went.

Today it has been about two years since that last swallow study.  We scheduled another one realizing that some time in the last six months we had been able to entirely wean the Quail off of her Prevacid and she had only thrown up 2-3 times since then. I knew from the last couple of studies that it wasn’t wise to expect much progress and to be prepared for new precautions to be suggested.

We were, happily, no amazingly surprised! The Quail, she wasn’t so keen on doing the study this time. It took more than one suggestion of time out, offers of cake, validations of her feeling scared, multiple rotations of which parent was in charge of offering the barium-coated goodies and which needed to hold down her arms. This time we got the following results:

*Her swallow delay is now down to .5-2 seconds.

*She still has decreased tongue base retraction

*She has improved coordination in her ability to move the food and drink from one section of her mouth to the next.

* It still doesn’t look pretty when she moves it, but she is in control of it.

*The coughing that she exhibited (lucky for us she did this on film, as we often see it during meals and during water play) was not due to her aspirating or food getting stuck, it seemed to just be a response to her not liking a food or texture of the food.

*The cough was strong enough to expel said, undesirable food/drink in a way that helps her stay safe.



We really didn’t expect to get to hear this for a number of years if ever. We had accepted the need for thickened liquids as just a part of who the Quail is. Of course we were warned, there is a chance that today’s study was just one wonderful moment in time, the best of her ability to swallow, so we need to watch for signs that she may be aspirating- which include coughing, choking and repeated illnesses. And of course that is going to be difficult to tell what the cause is. Cause you know, she goes to daycare, and she’s starting public school in the fall and will be exposed to a whole new set of germs, and each growth spurt may very well mean that she’ll experience difficulty controlling her swallow again, and she’s prone to ear infections and her tubes have come out in the last year and the ENT says we need to see if she starts getting sick again repeatedly before we’ll know if she needs a new set of tubes, but odds are she will since her eustation tubes are naturally tiny; and she has a VSD, and she has Down syndrome and all of these things are likely to lead to a weakened immune system. So it will be hard to pinpoint the exact culprit and what the plan of action should be if we do end up spending our days in the pediatrician’s office begging for antibiotics and a new nebulizer this winter. Time will tell.

In the meantime, little girl is cleared for drinking thin liquids as long as they are through a straw so she has control of them and the opening in the back of her throat when she swallows is minimaized (as opposed to the size of the opening when you tip your head back to drink), although it would be better if we transition her back down to that with cold liquids and much to our delight she is cleared for swimming!!!!!

To swim or not to swim has been a longstanding question for us that it was really hard to figure out who would help determine what was safe. I asked her pediatrician, her EI, her SLPs, her geneticist and Zuzu’s swim teacher. If a girl aspirates on thin liquids, is it a good idea to give her swimming lessons so that if she were to find herself around water she can learn to be safe, or do we need to need to work like nobody’s business to ensure that she never comes anywhere near ANY body of water. I have such a strong memory burned into my momma heart of one night’s tubby when she was under two and slipped in the bathtub and her entire head went under. Her sweet, scared eyes locked with mine for the two seconds it took for me to pull her back up to safety. Yes- water- it’s everywhere and of course she’s as drawn to it as a moth to a flame. Of course she would still be at risk, but it’s only slightly more than any other child learning to swim.

The other two pieces of information that were new were two other therapeutic options for treating what is at this point a neurogenic swallowing disorder. Essentially these are desensitization techniques. I’m not a fan of that category of treatment at all. When one of our first therapists who was repeatedly experiencing the Quail’s temper throughout her sessions with her suggested we need to try brushing the Quail and that she has a sensory processing disorder we balked. We weren’t willing to try it until we had tried another therapist first and lucky for us, it turned out the only thing that the Quail was sensitive to at that time was her dislike of that therapist. We had other explanations for the behavior that the therapist felt represented a sensory processing disorder. What she saw as over sensitivity to nursing, we feel in hindsite was the fact that our kid was aspirating on the milk I was trying to force her to nurse from me with and she was trying to stop me. What she saw as sensitivity to touch was a non-verbal toddler’s way of letting us know that she didn’t want to be doing the prescribed activity with that therapist.

 The first option that we’ll receive a referral for is called therma-tactile-stimulation. This involves, taking large, frozen, lemon gelatin covered swabs and brushing them on either side of her tonsils three times in a set, 4-5 sets a day, for 5-6 weeks. This is meant to essentially stimulate the low toned muscles that the brain usually activates to swallow immediately in a typical person. Apparently with this procedure, once you’ve done it for a number of weeks, you should see fairly immediate improvement in her ability to swallow and that improvement should be long-lasting assuming no further neurological insults happen.  The downside, well; have you ever tried to give a small child or a cat medicine when they are aware that they don’t want it? You haven’t, well lucky you. I have- both of those scenarios. It’s not pretty, it’s not fun and no one comes out a winner. That said, the thought that we may be able to stimulate those muscles to a point that they would function typically and remove the risk of her getting sick from the daily, necessary act of drinking and eating, well I’m willing to try and see just how much she will protest. There is a small part of me that has hope it won’t be too much since she is the first kid I’ve ever met that flops her mouth open at the site of dental floss inviting you in to meet her molars.  Neighbors might prefer we wait till it’s closed window-season to start I’m sure though.

The second option is called vita-stim. This SLP started being trained in this technique a couple of years ago, essentially after the last time we saw her and she said from what she has experienced it has had great success. She did warn us though, to be careful of the experience level of the therapist administering it, because if administered wrong, it could do harm. It essentially involves taking a very low dosage current and applying to the muscles that are not functioning typically in order to stimulate them back into a regular motion. She said it would feel like buzzing on her skin and we would each do it on our own arms so we are aware of what she will experience. It would mean going to have this done about 3 times a week for a series of weeks. She said that the last two children that she has worked on involved an infant and a toddler with Ds and there was immediate and vast improvement in their ability to swallow. Typically this is something used with muscles that have atrophied.

We are to try the therma-tactile-stimulation first though to see if we get an improvement first with that and wouldn’t need the vita-stim route, which would be good because apparently there is a long waiting list to even be seen.

In the meantime, we celebrated our swallow-study results with a hospital cafeteria lunch and giggled our way back into our day.