January 10, 2015 by Jolene

And she’s off…

Our girl is walking. In the span of just a few short days, she has made tremendous progress. She went from taking a few steps here and there to taking around 20 steps to strolling across rooms and beyond. She turns corners, bends to pick up toys, dances, and generally navigates with confidence. She still stumbles sometimes, and she crawls when she’s in a hurry, but she’s getting more comfortable all the time. The physical therapist was impressed with her form and advised us to stop using the orthotic braces and try just a pair of supportive shoes. (She does still need some ankle support to keep her feet from turning in.) We discovered tonight that we have the perfect pair on hand – beautiful, never-worn Primigi boots handed down to us by a friend. Just in the few hours she wore them, she made huge progress. It looks like we’ve left the braces behind for good.

So, at just shy of 28 months, it has happened. In her usual fashion, she waited to walk until she was sure she could do it well. It’s tricky to catch her on camera, so pardon the dark video.

I guess I officially have to stop calling her a baby now. Toddlerhood has arrived, and she’s not looking back.

September 14, 2014 by Jolene

And just like that, two years have passed.

Jon and I lay in bed Friday night reminiscing about the events of two years ago. Remembering Lina’s birth is a complicated experience. Sometimes, I regret that memories of her arrival are mixed with clouds of grief and chaos. We – and I, in particular, as Jon pointed out – faced some very difficult times two years ago. As we reminisced, I asked: “What if we had received a prenatal diagnosis instead of being blindsided at her birth? What if we had given birth in a hospital instead of at home?” But ultimately, I come back to the belief that events worked out for the best. We didn’t spend months worrying about potential health problems that never manifested. I was able to have a natural VBAC rather than a repeat C-section that would have required a longer hospitalization and recovery period. And even with the chaos, we spent those days falling in love with our baby girl and finding our way to bright hopes for a future that looked a bit different than we had expected.

Today, as Lina teeters on the edge of walking and every day finds new words and ways to express herself, grief no longer plays a role. The pride and joy of parenthood is sharpened into something even keener, thrown into sharp relief by its contrast with those early fears and worries. The story of Lina at two is not about Down syndrome; it’s about the awesome little person she is. It’s about how independent, curious, bright, funny and affectionate she is, how watching her smile and laugh makes the world sing. It’s about her arms around my neck and her sweet babbling voice. It’s about hauling her away from the dog bowls and toilet bowls and picking up the paper she shredded and spread around the living room floor. It’s about watching her grow and knowing how well she is doing.

That’s not to say there aren’t unique challenges. We still spend a lot of time driving back and forth to therapy visits. I struggle to be patient with her sensory-related habits of hair pulling and throwing items across the room. Sometimes there is a stab when I see her interact with other kids her age and come face-to-face with her delays.

I used to wonder how to find the right balance between pragmatism and optimism. Did I need to prepare myself for potential pain and disappointment? The answer for me is a resounding, “No.” I have come to believe that our unbounded optimism about her future will be the single most important factor in her success. There will be challenges, no doubt, but we will deal with those as they come. We focus on today, doing our best to equip her for success, celebrating every milestone with everything we have, believing her possibilities are endless.

I will post later about where she is with specific developmental milestones. For now, I just want to say how incredibly lucky we feel to be dazzled every day by our sweet Eline Katherine. Happy birthday, beautiful girl.

A little celebration at church

Post cake, pre nap

September 4, 2014 by Jolene

Labor Day birthdays

We spent Labor Day weekend celebrating birthdays for two pretty awesome kids. My nephew, Benjamin, is turning four, and Lina will be turning two in just a few days. The fact that the exact date is not here yet allows me to ignore this reality a little longer.

We decided on a simple family picnic at a nearby park. Edwin Warner Park in Nashville has quickly become a new favorite, thanks in part to a nature play area where kids can dig in the dirt, make mud with water from the spigots and generally muck it up to their hearts’ content. This thrills Lina’s soul. She finds the nearest puddle, plops down in it and coats herself in mud like it’s her job. Nephew Luke discovered a shared love of mud, and the two of them ended up looking like… Well, you can see for yourself. Meanwhile, Corin and Benjamin embarked on a “paleontologisting” adventure, digging for T-rex bones at the top of the dirt hill. They made up ridiculous names for each other and generally had a great time all weekend.

The menu was easy: sandwiches, macaroni salad, avocado/corn salad, fresh fruit, and banana cream cupcakes and (very soft) ice cream for dessert. The weather forecast had been threatening thunderstorms, but we lucked out and had overcast skies and pleasant temperatures, with just a little sprinkling of rain here and there. We returned home in time to open gifts before my brother and his family had to hit the road back to Chattanooga.

There is something about these kinds of family gatherings that whispers, “Remember this. This is the stuff of life.” The squeals and shouts of little kids, the chaos of big meals, the mess of toys everywhere I look, knots of people deep in conversation, peals of laughter from the next room… This is family. There is nobody perfect here; it’s just a lot of people who love each other, celebrating milestones together and making some awesome memories in the process.

(My thanks to Ryan for taking quite a few of these pictures.)

Ben understandably felt the situation required a little observation first.

To the creek for a bath!

The vanilla pastry cream was delicious on the banana cupcakes, but trying to pipe it from a plastic bag did not make for the prettiest results. I recommend the ice cream scoop method.

_MG_6470

That kid really hates ice cream.

Cake!

Lina’s favorite part was the Tweety Bird card.

Thank you!

The new tire swing sees daily use.

Blowing good-bye kisses

I spy an airplane.

You know it’s been a good visit when you’re totally bummed about saying good-bye.

April 7, 2014 by Jolene

Corin William at 4 years

Corin at 4:

Can talk your ear off, spinning wildly fantastic stories about any subject that has captured his imagination. He is sometimes shy, particularly in new situations, but he is also often friendly and chatty with strangers in the grocery store. He uses a very grown-up vocabulary and syntax, which can sound pretty funny out of the mouth of a pre-schooler. (For example, he uses “certainly” quite regularly.) He speaks clearly but still has a few holdovers from toddler speak, such as “y” sounding like “l” (“lellow”) and “th” sounding like “f” (go “wif” you somewhere). He also has a bit of a southern accent, which is more developmental than regional. He wants you to sit “next of” him at the table.
Is a sweet-natured kid who generally remembers his manners and behaves well in public (with the inevitable off day here and there).
Tends to be a non-participant in structured group activities like singing along at church or Mother’s Day Out. He prefers to be an observer, and he’ll then sing the songs in their entirety at home.
Is usually a good eater, and with some encouragement will eat a wide range of vegetables and fruits, including salad. His favorite foods are haystacks (similar to a taco salad), macaroni and cheese, hardshell bean tacos and enchiladas. (There’s a definite Mexican theme.)
LOVES books and will sit quietly and be read to as long as someone is willing. He is able to enjoy simple chapter books. His favorite Bible story is David and Goliath, which gets regular time in his imaginative play.
Is fascinated with airplanes, construction vehicles and cars. His transportation-themed toys are in constant rotation.
Is beginning to appreciate Legos and the skill of building things. He is pretty adept at following a simple pattern.
Has really developed socially and loves to play with other kids. He interacts well with kids who are his age or even quite a bit older. An example: At a playground recently, I lost sight of him for a few minutes and then relocated him learning basic soccer and football skills from a couple of very patient 9- or 10-year-old boys. They were having a great time, and he was chatting away with them.
Is becoming more independent all the time. This has never been one of his stronger personality traits – he’d really rather someone else do things for him, if possible – but he is learning to take ownership of simple tasks and will often insist on doing things himself, now. He feeds the fish by himself, dresses himself, cleans up his own toys and occasionally helps feed the dog or set the table for supper. He likes to help cook. He helps with simple yard work tasks like pulling weeds.
Can be very bossy! He has very specific ideas of how things should go, and he won’t hesitate to hand out orders like a worksite foreman. He does not like having his carefully-arranged toys messed up by, say, a baby sister on the prowl.
Does not respond well to pressure. If he senses a lot of pressure to do or say something specific, he will often shut down. If I want to know how his day at Mother’s Day Out went, I often have to let him tell me in his own time. The details will usually eventually emerge, but pointed questions may get an, “I don’t want to tell you” response. Reverse psychology works wonders at this age.
Is a knowledge sponge. He asks lots of “why” and “how” questions, so we’re relying more heavily on Google these days. We recently spent a good hour reading about the Wright brothers, Charles Lindbergh, Amelia Earhart, super sonic flight and the space shuttle.
Shows little artistic or musical aptitude yet. His idea of craft time is cutting pieces of paper into small bits or smearing water color paint around on a page until it all looks a murky shade of brown. His singing is…rather bereft of tune. His strengths seem to lie in communication, conceptual and imaginative pursuits and possibly technical or engineering-related skills. We’ll see if that persists.
Loves the outdoors and is a great hiker. He has been known to hike at least a couple miles without issue.
Is sometimes argumentative and certainly knows how to push the boundaries. He likes to test his parents. He has a rather loose relationship with the truth.
Is very attached to his lion lovey. He can sleep without it, but he wouldn’t be happy about it.
Still adores his mama and likes to take time in his day to “cuddle on the couch wif you.” Of course, he also loves his daddy and grandparents, and he’s a pretty sweet big brother to Lina. He loves to have her come with me to get him up in the mornings, and sometimes I have to respond to her wails because brother and trying to keep her with him against her will.

He is my heart.

His most frequent pose.

“Corin, your hair’s a mess.” “Here, I’ll fix it.”

“Is that better?”

April 3, 2014 by Jolene

That sweet face – 18 months

I’ve been meaning for a while to do a bulleted list of where Corin and Eline are at their four-year and 18-month milestones. Life is in the crazy-stressful zone this week, so this is my escape to a happy place. I realize the details of my kids’ development are probably only interesting to me, but at least it’s documented somewhere. It’s certainly not in Lina’s baby book. Poor kid is the cliched second child on that one.

Eline at 18 months:

Is experiencing another big developmental leap in all areas. Her speech, cognitive and gross, fine and visual motor skills are all improving simultaneously. This is of note because it’s common for kiddos with Down syndrome to have a laser-like focus on development in one area while the other areas take a back burner. Interaction with her now is so different than it was even two weeks ago.
Crawls at warp speed to get pretty much anywhere she wants to go. Is active, inquisitive, and always on the go. Pulls to standing easily and has just started cruising along the couch. Turns pages in a book upon request. Points to items that catch her interest. Puts items in a container.
Is very independent. Therapies can sometimes be challenging because she doesn’t want anyone helping her or showing her what to do. She wants to do it herself. She has clear preferences and her own agenda, and she does not like being thwarted in her plans.
Her current favorite activities are pulling books off her shelves; crumpling paper; playing with any tags, strings, hair or other loose bits that can be pulled, twirled and twisted; bath time; playing with musical toys or most anything that makes loud noise; imitating brother.
Says at least a vague approximation of more than a dozen words or sound effects: mama, dada, bath, all done, out, duck, quack, a motor noise for vehicles, an “aaaaah” sound for airplanes (as taught in therapy), bye-bye, hi, and probably a few more. She also uses a handful of signs or gestures, like waving hello or good-bye, blowing kisses and signing all done or more.
Laughs frequently, at herself or others, and loves to play games and spend time with close family members. She is strongly attached to immediate family and currently is going through another phase of serious stranger aversion. She prefers mommy, but she also adores daddy and brother. Grandparents are dicey, therapists are maybe okay if mommy is present, and anyone else is a no-go.
Is now a regular champ with bottles. We were able recently to switch from the obnoxious latex nipples to a wide silicone one. She takes 5 oz. of toddler formula by bottle just before meals. We are still working on drinking from a cup. There has been some limited progress, but we have a long way to go there.
Still LOVES to eat. She is a bread and protein girl. Her favorite fruit is banana, and she often eats an entire one in a sitting. Unlike her brother, she’s not a big fan of pasta, yogurt or applesauce. She can usually be coaxed to eat her vegetables. She prefers peas, carrots, sweet potato, broccoli, and maybe green beans, asparagus or brussels sprouts. Often it works best to mix the vegetables in with something she really likes. She still sometimes throws food, but that has improved some. Meals are generally very messy affairs. I struggle to understand the volume of food that winds up on her back and butt.
Usually won’t leave hair bows in and refuses to wear hats. She does not do well with her bone-anchored hearing aid. We try to use it for reading books and close communication, but she cannot wear it unsupervised, as it will be promptly removed and abused.
Can be LOUD! She yells when she’s excited or upset, and when she’s really angry, she can rouse the neighborhood. Her chatter voice is very sweet, and her laugh is a funny staccato that makes everyone else laugh, too.
Still sucks her first and middle finger when she is sleepy or hungry.
Sleeps around 11 1/2 hours a night and takes one two-hour nap beginning around 11:30 or 12:00. She gets a little snuggling and rocking and usually goes to sleep easily on her own with her bunny and blanket.
Is coming up on 23 pounds and is wearing 12-18 month clothes and size 3-4 shoes.

Girl has got some hips.

Corin’s update to come.

October 12, 2013 by Jolene

That sweet face – 1 year

Eline at one year:
(Okay, she’s actually almost 13 months, but I’ll be posting these less often now, so it’s close enough!)

Gets on all fours and scoots herself forward in an almost-crawl.
Can pull to standing in some situations.
Enjoys a great variety of babble, seems to say “mama” and “dada” with intent, and listens carefully to anyone who talks to her. We’re working on encouraging imitative vocalization, but we’re not there yet.
Loves, loves, loves to eat a huge range of real food. She greatly prefers to feed herself and has less patience for spoon feeding, although she is happy with it for favored foods, like spaghetti or beans. She also loves bread with peanut butter or hummus, cheese, bananas, Cheerios, bits of casseroles or veggie meats, potato, butternut squash and sweet potato. She will also eat most green veggies, although the other foods on her tray are likely to disappear first.
Bottles are still a struggle, but she is eating enough calories that her need for liquids has decreased and we have just dropped the last night feeding. She currently takes around 3-5 oz. of formula just before meals and then around 6 oz. at a 9:30 p.m. dream feeding. We have met with a feeding therapist a couple times to help us get started on transitioning to a cup, which is going to take time and practice. The goal is to have her proficient enough to drop the bottle by 18 months.
Still takes two naps – shorter in the morning and 2-3 hours in the afternoon – and sleeps 7 – 7:30 p.m. to around 6:30 a.m.
Is back to happily tolerating anyone who wants to hold and play with her. She loves to interact and will happily snuggle, but she’s also on the move and wants to explore. She does not sit still unless she is sleeping!
Has four teeth – top and bottom front – and a molar half in on the top right. She seems to be working on one or two others.
Weighed just under 19 pounds at her one-year doctor’s visit and is wearing a combination of 9 month and 12 month clothes and size 2 shoes.
Is scheduled to get a bone-anchored hearing aid next week. Also saw the ophthalmologist recently, who said she is slightly nearsighted and has some astigmatism but does not currently need glasses. (Whew!)
Tested at 12 months for fine motor skills and just a slight delay (around 10 months) for visual motor skills at her occupational therapy evaluation. We will be starting therapy twice a month to support continued progress.
Has a real thing with pulling hair.
Adores Corin and laughs more easily all the time. Loves to be read to. Loves music.

September 20, 2013 by Jolene

She’s the apple of our eye

Lina’s birthday weekend, in photos

Did you SEE what he just did? I am so embarrassed.

Cake!

And a little video of the birthday song

(She did eat the cake and enjoyed it very much.)

Photos and video courtesy my brother, Ryan Harrell. Thanks for being the designated shooter, Ryan!

September 13, 2013 by Jolene

One Year

My baby girl is one year old today.

There is so much swimming around my head, I hardly know where to start.

One year ago today, this was me:

And not long after, there was this:

And then came the chaos. (Full story here, for those who haven’t read it: Part I and Part II.)

I look back to the moment I first held Lina, just a few feet from where I sit now. I remember what I felt when I first laid eyes on her, long before my conscious mind had processed what I was seeing. I looked at my daughter, and she was not what I expected. I didn’t know what that meant yet, but I remember experiencing an instant shift. In my memory, it seems as if there was a nearly-audible “CLICK” as I looked at that tiny, red bundle. Without understanding what was happening, my world adjusted and my heart opened. It was as if a train had suddenly changed tracks. I pulled that baby girl to my breast, and from that moment, there was no going back. I don’t know for sure if it was a formed thought, but I knew: “She is not what I expected, but she is mine.”

A year has gone by. First, there was grieving. Sometimes, there still is.

There was never any question of loving and accepting our precious girl. But we had to grieve the baby we thought we were having, the parenting experience we thought we were signing up for. There are still moments I watch other families and feel a stab. Sometimes I wish for a simpler life. Sometimes I have flashes of resentment for our increasingly-packed schedule, the extra worry, the complicated decisions.

But always, always, always, I am so grateful for my daughter. A simpler life would not be worth having if it didn’t have Lina. When we meet new people, when we mingle with friends, when we visit the local park or library, I feel one thing above all else; I feel pride. My baby girl (who is not really a baby any more) is awesome in countless ways. Above all, through all, I am proud to be her mother. (Jon, it should be noted, wants it said that he is also extraordinarily proud to be her father.)

This past year has taken me to school. I have learned that hiding behind my conviction of my own open-mindedness lay a lot of preconceived ideas about people with certain kinds of differences. I’ve learned what it means to toss out the superfluous and really get down to the core of what you want for your kids. I’ve learned a new vocabulary. (Levothyroxin, conductive hearing loss, baha, organized feedings, hypotonia, ling sounds, TEIS, ISP, IEP… The list goes on.) I’ve learned to navigate the Vanderbilt metropolis like a boss. I’ve learned how to find and read school achievement stats. (Thank you to my good friend Kelli Gauthier on that one.) I’ve learned that my prenatal worries over bonding with a child who wasn’t biologically mine could not have been less relevant. I’ve learned that God really is as big as I need Him to be.

The lessons are ongoing. The challenges are ongoing. But Lina is growing and changing every day, and I get to be there for it. I get that front-row seat. I get to be her mom.

Lina is a year old. There’s still a lot I don’t know. But of one thing, I am certain: I’m so glad she’s mine.

Happy birthday, Eline Katherine Sharp. My love for you is endless.

August 15, 2013 by Jolene

That sweet face – 11 months

Eline at 11 months:

Easily sits unassisted for very long periods, with great trunk rotation to reach toys and see what’s happening around her.
Loves to play with toys, waving them around, chewing them, passing them from hand to hand, banging them on the floor or table, and eventually dropping them. She has been building great arm strength lifting heavy toys!
Is able to bear her weight in an all-fours position for short periods, and will start rocking back and forth in a pre-crawling motion while supported.
Laughs more readily and has a broad range of vocalizations, including lots of consonants (da-da, ba-ba, la-la, na-na, with some “g” and “m” sounds thrown in occasionally). Has started mixing her vowels and consonants in new ways and is beginning to respond to our vocalizations with answering sounds, though not necessarily with the same sound or pattern.
Is teething heavily. One top front tooth has mostly cut through, with the other still working its way out. This will make a total of four teeth.
Has started reflux medication to help with feedings, which seemed to result in dramatic improvement at first, but now issues are cropping back up. A little more time will tell whether it has really made a permanent difference. If not, an official feeding evaluation is likely in order. Takes anywhere from 3 – 6 ounces per feeding, with total daily intake ranging over the past month anywhere from 16 ounces to 27+. Still feeds five times a day.
Continues to strongly prefer mom and dad and brother but is beginning to tolerate other family members, friends and therapists a little better.
Has physical and speech therapy appointments and TEIS teacher visits twice a month.
Has not been able to use the loaner traditional hearing aids, so we are in the process of ordering a bone anchored hearing aid. The ENT was able to evaluate her ears better at this past week’s visit and has confirmed that her hearing loss is due to the tiny size of her ear canals rather than fluid, so tubes will not be placed. She will simply need to grow until her ear canals are large enough for sound to pass through more easily. The ENT expected this to take at least two years.
Is generally a happy, smiley baby and is very engaged in what’s happening around her. She loves to study faces and has a fixation with hair. She loves the “honk mommy’s nose” game, which I am likely going to regret having taught her.
Weighs about 17 1/2 pounds and wears size 6 – 9 or 6 – 12 month clothes.

I find it truly shocking that she is now approaching her first birthday. I am trying to soak up as much snuggling and cuddling as I can, as I know it won’t be long before she’s truly on the move. I love how affectionate and sweet she is. I am incredibly grateful for my girl and what she brings every day to our family.

July 18, 2013 by Jolene

That sweet face – 10 months

(We’re overdue by five days, and the pictures were taken in Mimi’s kitchen instead of the usual location. But 10 months she is, so here goes…)

Eline at 10 months:

Weighs about 17 lbs. and is wearing clothes for 6 – 12 months and size 3 diapers
Is on her fourth week of pretty severe feeding issues, finishing bottles only in her sleep and often refusing half or more of the bottle during waking feedings. The Vandy feeding therapist suspects reflux, and we have a call in to the pediatrician.
Is taking all-formula bottles and seems to enjoy solid foods, including small bits of finger foods like fresh fruits, baby puffs and bread. I usually have to feed them to her, but she is able to do some self-feeding.
Has started refusing to allow anyone but mom, dad or brother to hold, touch and interact with her. She may smile at other family members or strangers if mom or dad is holding her and she is well-rested and in a good mood, but if she’s tired, just a look at a face other than ours will set her wailing. And if anyone but us tries to hold her, watch out. The trauma escalates until mom or dad takes her back and calms her down again.
Sits unassisted for minutes at a time, playing with toys and turning to noises, although she tends to fuss about how much work it takes.
Loves to play on her tummy and can spin herself easily in any direction and wiggle forward a bit. Wants to crawl and tries to lift her torso but doesn’t yet have the coordination to get on all fours.
Babbles constantly, blowing LOTS of raspberries, making guttural sounds and now using some consonants (mostly “da-da-da” and the occasional “ba” or “ga”).
Is a good sleeper at home, in her familiar environment – napping 30 minutes to an hour in the morning and 2 – 3 hours in the afternoon, and sleeping at night from around 6:30 to 7:30 p.m. to 6 – 6:30 a.m., with us feeding her asleep twice in the evening. She does not nap well anywhere other than her own crib but does seem to do okay at night.
Enjoys being cuddled, played with and read to and is a happy, good-natured baby. She smiles all the time in response to us and giggles some when she is being tickled and played with. She adores her brother and has even started smiling at the dog lately. She really absorbs a lot about her environment and notices so much of what goes on around her.
Loves to play with her toes and chews constantly on anything she can reach. She still acts like she’s teething, but nothing new has broken through.

I can’t believe my baby will be one in less than two months! There are real challenges day-to-day, as we deal with Lina’s quirks and needs. But there are also times when I’m glad that I get to enjoy my littlest being little for a while longer.

A Dash of the Unexpected

a story unfolding

Tag Archives: milestones