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:

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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.