One appointment at a time

Yesterday was Lina’s second visit to the Vanderbilt Pediatric Down Syndrome Clinic. The visit entails a series of appointments with professionals who all specialize in Down syndrome, beginning with the pediatrician and moving on to a nutritionist and speech/feeding, physical and occupational therapists. It makes for a very long morning, but these appointments have so far been infinitely helpful, and the professionals who see Lina at the clinic know their stuff and are incredibly encouraging and supportive.

So here’s the run-down of her visit yesterday:

1.) She is growing beautifully – in the 65th percentile for height and 67th for weight on the DS charts – and is making great strides in her development, staying right on track with her speech and physical milestones.

2.) They are recommending she begin speech and physical therapy, not because of any specific concerns, but in order to best support her continued progress. A Down syndrome diagnosis alone would not qualify her for speech therapy at this age, but she does qualify based on her diagnosis of conductive hearing loss. Her physical therapy appointments will be in-home with the early intervention therapist, but we are leaning towards taking her to Vanderbilt for speech, where they have therapists specializing in kids with hearing loss. Her initial speech evaluation at Vandy is scheduled for next Thursday.

3.) They drew blood to check Lina’s thyroid function, and it came back low. Hypothyroidism is very common with Down syndrome, and thankfully, it is easily treated with a synthetic hormone she will take for the rest of her life. Didn’t prevent me from having that moment: “Great. One more thing that will make her different and require management.” She has an appointment with a Vandy pediatric endocrinologist next month. Ultimately, I’m thankful to have the knowledge and be able to treat the problem quickly to avoid complications.

4.) She now also has an appointment scheduled for September with a pediatric ophthalmologist at Vanderbilt for her first vision check.

Clearly, we are transitioning from the early days, when little was needed besides normal infant care, to a time of increasing therapy and medical needs. It’s requiring some shoring up of my courage to face the growing number of appointments, recommended therapy exercises and other expanding needs for Lina. But this is my job as her mama (with lots of help from her daddy), and I am determined to do it with all the strength I have. I came away from yesterday’s appointment encouraged. Lina is doing great, and we have such fantastic resources available to us. I love that we have the opportunity to equip her for a happy, successful life. I have big dreams for her, and they start here and now, one appointment at a time.

Row, row, row your boat

(Okay, you paddle, not row, a canoe, but that just didn’t make as good a title.)

This past weekend, we took advantage of some beautiful weather to picnic with family and take the canoe out on Old Hickory Lake. It was Corin’s first time in the canoe, and he was a fan. I think he would have slept in that thing if we’d let him.


Lina still sporting her church finery

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That sweet face – 7 months


Eline at 7 months:

  • Takes two naps a day in her crib, the first one usually fairly short and the afternoon nap lasting 2 1/2 hours or more
  • Goes to bed in her crib for the night at 6:30 or 7:00 and sleeps until 6:15 – 7:00 a.m., with two feedings in the evening (around 8 and 11:30 p.m.)
  • Sleeps on her tummy, unswaddled, and sucks her first and middle fingers for comfort
  • Still enjoys her play mat and now likes the Exersaucer for short periods of time (with a towel around her for extra torso support)
  • Can roll around the room and does not often stay in one place on the floor, and continues to practice crawling motions
  • Will often give big grins to anyone who takes a moment to interact with her
  • Takes 5 oz. mixed formula/breast milk five times a day and just started oat cereal, which has met with moderate success
  • Has one tooth most of the way in (bottom right) and is teething again, which involves a fever, fussing and crying, runny nose, poor feedings and fatigue
  • Can sit with support but tends to stiffen and prefer to stand on her legs instead, and is still wobbly in her upper body when unsupported
  • Responds to voices and noises (seems to startle more easily since the ENT cleaned out the ear wax) and babbles with a variety of noises, including the recent addition of “buzzing” and spitting noises
  • Loves to be held, kissed, cuddled, tickled and talked to
  • Is generally easy-going and content, a good sleeper and an awful lot of fun



I heart that blonde, spiky hair.





She is very interested in her feet.


Getting sleepy…


Fingers, blanket, cozy crib, and all is right in the world.

Babies, birthdays and big milestones

In addition to our high school reunion this past weekend, we were able to stop and visit my brother and sister-in-law, where I met my new nephew for the first time. I’m already missing sweet baby Luke.

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We also got to celebrate Corin’s birthday again, this time with Jon’s side of the family. Corin had his cake Saturday night, his Mimi made a big birthday brunch on Sunday, and then he opened gifts. (One of his gifts, an awesome Radio Flyer wagon, was already in commission outdoors by then.)





He really hated the food.




The doctor kit is a huge hit. We passed a college the other day, and I explained to Corin that it’s a school where people learn how to be things like lawyers, musicians, business people or doctors. “But,” he says, “I am already a doctor.”




This exciting box…


…turned out to be this VERY exciting gift.

It was a fun and very full weekend. Lina napped for seven hours a day the first three days we were home. I think she has finally recovered.

Which led me today to decide it was time to make up a batch of homemade oat cereal and finally wade into the waters of solid foods with baby girl. Given the difficulties we have had with feedings in her first six months, and knowing this can be a challenge area with DS, I wasn’t sure what to expect for our first go. As it turns out, she finished the small bowl I’d mixed up and actually seemed to enjoy it. We may have a challenge with that tongue wanting to push the food back out, but I’d say that today, Lina rocked this milestone.


What? Do I have something on my face?

Of passing years and ear wax

We arrived home last night from a weekend in North Georgia, where Jon and I attended our 15-year high school reunion. (Every five years, I am reminded how nice it is that we share our graduating class.) The showing was small, but we had fun catching up with former classmates and revisiting the campus where we met and spent a lot of happy times. It usually seems a lifetime ago, but being on campus, where so much is the same (including that awful mural our class painted in the religion room), it felt like yesterday. I badly missed someone, though. Jennifer, my best friend from those GCA days, died this past November. As I flipped through yearbooks, I paused over so many pictures of a cute, smiling blonde who also occupies so many of my memories from that place. She should have been there, flipping through those yearbooks with us. I talked about her a little, but I thought about her a lot.


In today’s news, Lina had her first appointment with a pediatric ENT at Vanderbilt. (Actually, we were scheduled to meet with the nurse practitioner.) It was not a picnic for either of us.

You may remember that Lina failed two newborn hearing screens in the NICU. She was then referred to the audiology department at Vanderbilt for a follow-up screening that showed moderate conductive hearing loss in both ears. This means something is preventing the sound from clearly reaching the ear drums: in this case, likely a build-up of fluid. The audiologist described Lina’s hearing as sounding like she was under water. Another follow-up screen showed continued blockages in both ears, as did a repeat test today.

I’ll try to shorten our 3 1/2-hour experience to the cliff notes. We met with the nurse practitioner, who indicated we would be scheduling an appointment to place ear tubes to drain the fluid, which should significantly improve Lina’s hearing. She walked me through the relatively simple procedure, answered my many questions thoroughly, and then sent the nurse in to provide further information on follow-up care. We were then to meet briefly with the ENT himself, who would be the one to do the procedure. He was brusque and rushed, but the summary is that he was concerned about the size of Lina’s ear canals. He wanted to verify they were actually big enough to place the tubes. He was not able to see to the ear drum due to a build-up of wax. Thus commenced a thoroughly unpleasant experience in which he used a metal tool and then a suction device to remove wax from a strapped-down, wailing Lina’s ears while the nurse held her head still and I wiped her tears (and struggled to hold myself together).

The final verdict is that Lina’s ear canals are definitely too small for tubes. Her canals will grow with time, so we will go back in August for a re-check. In the meantime, we have been referred back to the audiology department for a bone anchored hearing aid. In adults, an implant would be attached to the skull bone, but in Lina’s case, they will use a headband to hold the device in place. I have more learning to do about this – an informational DVD is awaiting my attention – but the gist is that this aid will help bypass the blocked canals to improve Lina’s hearing at a time critical to speech development.

It was a tough day. I am feeling better tonight, as I’ve had time to process and recover from the trauma of the afternoon. We know Lina’s diagnosis of Down syndrome will mean a series of challenges to be faced in their time. This is today’s. We will do whatever is necessary to give her the best chance of hearing and learning speech.

A few bright spots of the day: Corin was so, so well behaved through that entire appointment, brandishing his new toy stethoscope in the real doctor’s office. And all the office staff thought Lina was so cute. Because, let’s face it, she is.