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:
I always enjoy reading your posts, when Sharon shares. You are very good at this, & after I finish reading, I always have the thought, “This could be the foundation for a great book!” You’re doing a terrific job keeping your focus on the positives. I know that isn’t always easy. Know that you are in my prayers as you are being the best Mama you can be for precious little Lina. Remember, test scores are markers to guide the way – not defining Lina’s perimeters. She will indeed “rock at this” because she has you & Jesus leading her to her destiny. ~ Hugs & Prayers, Judy
Thank you so much, Judy. I really appreciate your encouragement and prayers. They mean a great deal!
You are opening a new world for us all. My little granddaughter (just turned 3) has enlarged adenoids and will need them removed soon. And we thought THAT was a big deal!!! You help us keep our lives in perspective…
So glad what I write here has helped, Teresa! We all have our own struggles. I will say a prayer for your granddaughter.
You are a wonderful mother, Jolene! Of course, she deserves no less. I know it can be daunting, but you are tackling all of this head-on, and I know she will get the absolute best care and services possible. With you as her advocate, how could it be otherwise? I guess it’s sometimes good to have a journalist as a Mommy–we get to the bottom of things, don’t we? 🙂 You are doing an amazing job. And what a sweetheart in that little smocked dress! She is a beautiful girl…
Thank you, Beverly. All moms face their own challenges, and we’re all advocating for our kids the best we know how. I know you have also had to jump through so many hoops for your precious little ones from the very beginning. That journalism training does come in handy when you’re trying to dig up information and get to the bottom line!
I’d love to know more about your experience at Bill Wilkerson. That’s how I found your blog, actually, when I went searching for parents’ experiences there. So far I haven’t found much feedback AT ALL on the interwebs.
Hey there! I’m happy to talk more about our experience at Bill Wilkerson. We have been THRILLED with the speech therapy services we receive there. Lina sees Geneine Snell, and she is fantastic. The therapists there specialize in kids with hearing loss, which has been so helpful to us with Lina’s conductive hearing loss. Geneine is so good with Lina, and she gives us practical things to work on at home during the week. She is experienced and professional and so reassuring. Lina is making slow but steady progress with her help. We could get speech therapy closer to home, but I choose to make the not-insignificant drive to Vanderbilt because I feel the quality of the services there are worth it. If you have specific questions or would like to know more, feel free to email me: jolene dot sharp at gmail dot com.