June 4, 2013 by Jolene

Hearing and speech – or, she’s going to rock this

Need to know where the Vanderbilt Bill Wilkerson Center is? Trying to find an office in the Vandy Children’s Doctors’ Office Tower? Wondering where to park in the South or East Garage? I am now the girl to ask.

In the last week, Lina has seen the audiologist about hearing aids, followed immediately by her first visit to the pediatric endocrinologist for management of her hypothyroidism, followed yesterday by a visit to the pediatric speech-language pathology clinic for speech therapy evaluation. At least Vanderbilt appointments no longer involve mild panic over finding my way to the proper spot in that mini-metropolis.

So, here comes another bulleted list of appointment highlights. Probably not the most interesting reading, but full disclosure: this is likely to be a recurring feature.

The hearing aid decision was more complicated than the ENT led me to believe. He seemed to indicate the next step would be a bone-anchored hearing aid, but in talking with the audiologist, there was also a strong case to be made for trying traditional (and less expensive) behind-the-ear aids. We talked over the pros and cons, and I opted for a loaner set of behind-the-ear aids. We will pay for the custom in-ear pieces that attach to the aids, but it seemed to make sense to hold off on buying her own full set, as there is a chance the standard aids will not work well with Lina’s tiny ear canals. The loaners will be available to us for up to three months. Besides helping us determine if they even work for her, it will also buy us time until her next visit with the ENT, when we can hopefully get more information about longer-term solutions. The big question is how long it will be before Lina’s ear canals are big enough for tubes, which we hope may make the hearing aids unnecessary long-term. (This is by no means guaranteed.)
The endocrinologist visit was pretty straight-forward. Lina’s thyroid production is only slightly low; the doctor said that in some cases with Down syndrome, young babies with low numbers may actually outgrow the problem. She suggested that if things still look pretty good by the time she turns three, we may be able to try taking her off the medication. We have thankfully been able to switch from a liquid medication that had to be compounded at a special pharmacy every eight days to a much more manageable tablet I crush and give her with a little water.
The speech evaluation was very interesting to me. I loved the therapist we met with (who is unfortunately leaving to get married in a month), and she was very encouraging. This evaluation was the first time anyone had given us quantitative information about Lina’s development. Based on information I provided and observing Lina’s interaction with people and toys, the therapist was able to give her a numerical score for several areas, including hearing, communication and cognitive. Lina scored on the low end of the normal range for cognitive and in the mild delay range on everything else. Her milestones are on par with a typically-developing 4-month-old. (That part was a little hard to hear.) The therapist was very pleased with the progress she has made thus far on her own and felt that with speech therapy (twice monthly for now), she could continue to make steady progress. She said that therapy should be able to help avoid a tendency for developmental gaps to widen after kids turn one. She felt Lina’s current progress has been helped a lot by being close to me all day, in a relatively quiet home environment with a lot of one-on-one interaction. I hadn’t thought too much about physical proximity and background noise, but it makes sense that those things would be factors for a child with hearing loss.

Running around to so many appointments has been exhausting, but I continue to be thankful that we have good resources for managing the challenges Lina is facing. I feel really good about the experts on Team Lina, and I like that we’re being proactive with therapy. She’s going to rock at this.

And from the last few days, for fun:

May 30, 2013 by Jolene

The best medicine

There is little doubt in my mind that having to wait longer for milestones means we appreciate them that much more when they come.

Turns out Corin’s monkey antics were just the thing to bring on Lina’s first real laughs. The video is dark and wobbly, and we didn’t catch the first round of laughs, which were even better. But I could watch it over and over, just the same.

Corin was terribly pleased at his success, and I even got my own little giggles this morning, tickling her neck with my kisses.

These are the moments I live for.

May 24, 2013 by Jolene

Happenings

The house is quiet, it’s not yet late enough for regret over not heading to bed right-this-minute, and so I will try to do a little catching up on recent events.

The big news around here is that Jon has a new job. He is stoked about this gig. Starting June 3, he will be chief technology officer for a start-up doing some pretty cutting-edge stuff in the field of wearable computing. (Call us gluttons for punishment, but it turns out start-ups are his thing. Also, do I get any geek cred for using the term “wearable computing” properly in a sentence?) It is not an easy thing for him to let go of day-to-day involvement with the start-up project that has been his baby for the last six years, but after some serious deliberation, we both agreed it was the right time for him to move on to new adventures. It’s a big change, but I love seeing how excited he is about this new project, which synchs with his interests and skills in uncanny ways. And added bonus: He will continue to be able to work from home. We anticipated that a job change would involve a possibly-lengthy commute to an office, so this feels like a gift, especially given the thoroughly-established expectation that work days will no longer bleed into the wee hours. Our kids are incredibly lucky to have a daddy who is present in their daily lives, even if it’s just to pop up to say hello or to grab a quick lunch between meetings. I know there are times Jon does not relish hearing the wails of three-year-old tantrums carrying down the stairs, and there may come a time when his company establishes a Nashville office and he is away from home during the day. But for now, this definitely lands in the “win” column.

Otherwise, life is proceeding relatively uneventfully. I have for a little while now been watching a sweet one-year-old girl one or two days a week. Corin loves Claire, and we have settled into a pretty manageable routine. I have even braved a couple outings with all three kids, and as with any new challenge, the trick is to just do it. (I guess Nike beat me to that revelation by quite a few years.) I’m developing biceps from carrying two babies around, which doesn’t hurt my feelings a bit. Also, I see a distinct advantage to Corin learning now to deal with a small person who wants to play with his stuff. They do pretty well together. You might even say they have a little romance going.

Change comes. Life continues. We are tired but so very blessed. That about sums it up.

May 23, 2013 by Jolene

My day off

I am tired.

It’s surprisingly hard for me to type that sentence, there by itself. I want to apologize for it, to follow it up by saying that I know my gripes are so small compared to real problems, to caveat by noting all the moments that I look at my children and marvel at the privilege of being their mom, of sharing my days with them.

There is all of that. But the truth is, I am tired.

Lina is going through another phase of difficult feedings for heaven knows what reason (my suspicion: the wind is blowing the wrong direction), Corin is fulfilling the prophetic musings we heard from friends for years about how much harder age three is than two (see this blog post for a brilliant snapshot of recent days), and the list goes on with a lot of normal, everyday stuff that just adds up to a tired me, needing a break.

Which is why I am taking one.

This Sunday, Jon will be handling all parenting responsibilities, and I have glorious plans for sleeping in, a pedicure, shopping and whatever else happens to strike my fancy. All of this I will be doing alone. Gloriously, entirely alone. Me with my thoughts and an entire day of freedom.

Don’t mind me. I’m just doing a little giddy dance over here.

May 19, 2013 by Jolene

That sweet face – 8 months

Eline at 8 months:

Weighs 15 1/2 pounds and is around the 67th percentile for weight and 65th for height on the Down syndrome growth charts
Is wearing a combination of 3-6 and 6-9 month clothes
Is increasingly vocal, with lots of vowel sounds, spitting and the occasional guttural “g” or buzzing “b” sound
Pays lots of attention to her surroundings, especially when brother is running around the room, and is easily distracted by activity or interesting visuals
Startles at loud noises and sympathy cries with other babies/children
Loves to be held, tickled, talked to, played with, read to and snuggled and often responds to interaction with big smiles, even from across the room
Has tolerated purees relatively well – oat cereal, banana, avocado, prunes and apples so far, with prunes being the clear favorite – and is learning to take bites off the spoon
Takes 5 oz. bottles of mixed formula/breast milk five times a day at around 7 a.m., 11-11:30 a.m., 3:30-4:00 p.m., 7 p.m. and 11 p.m.
Usually takes a shorter nap in the morning around 9 a.m. and a much longer nap in the afternoon starting around 12:30 – 1 p.m.
Goes to bed around 7 p.m. and sleeps until anywhere from 5:30 – 7 a.m. She will usually talk to herself and maybe doze a bit until we get her up around 7 a.m. Sleeps on her tummy and sucks her left-hand first and middle fingers. Usually gets a story and a few minutes of rocking and is then laid down sleepy but awake in her crib to put herself to sleep. I’ve also started giving her a little bunny lovey, which she seems to like to hold as she goes to sleep.
Loves to play with her feet, kick her legs high into the air and explore with her toes
Is still working on learning to sit unsupported and is not yet ready to crawl
Has her first tooth on the bottom right most of the way in and has just cut her bottom left tooth
Is on week two of thyroid medication, which has proven to be a hassle (The liquid medication has to be filled by a compounding pharmacy and is stable for only 8 days.)
Has appointments at Vanderbilt on the 29th with an endocrinologist for the hypothyroidism and an audiologist for her hearing aid evaluation

May 6, 2013 by Jolene

Just the three of us

It’s just me and the kids for a couple days, so I took a picture yesterday to buoy our spirits while we miss our daddy. It may have taken a promise of mac and cheese for lunch to get Corin to cooperate.

That boy’s smiles are hard to capture these days. I’m practicing my trigger finger.

There is a lot happening in our world. Maybe sometime in the next, say, month, I’ll have time to sit down and write more about it. For now, we’re riding out a ridiculously slow spring in hopes that truly warm weather is just around the corner and thanking God for a lot of big blessings.

April 26, 2013 by Jolene

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.

Image April 21, 2013 by Jolene

The smile that lights up my world

April 19, 2013 by Jolene

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

April 16, 2013 by Jolene

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