In with a whimper, out with a hallelujah

What a week.

Jon has been away for work since 4 a.m. Monday. (Insert whimper.) He’ll be home tomorrow afternoon, and I would describe my status as hanging on by my fingernails. I owe an enormous thank you to my mother, who has made time in her busy schedule to take my son to Vacation Bible School three days this week while I ferry Lina to various appointments. It has made my life much easier than it could have been.

Lina went to Vandy Wednesday to get her loaner hearing aids. They were booked out so far for this appointment that by the time we got in, she had already outgrown one of the custom in-ear pieces. (The ear molds are obviously not loaner, but thankfully, Tennessee Early Intervention is paying for them, as they are not covered by insurance.) They took new ear impressions, sent us home with the one hearing aid that fit, and we’ll go back in 2-3 weeks to get everything set up for the full set of aids with updated molds (which will last for a couple months, until she again outgrows the ear pieces). However, since we’ve been home, I have been entirely unable to keep the hearing aid on my tiny girl. The loaner aid is bigger than newer models, and her little ear just doesn’t hold it in place. Another call to the audiologist this morning, and I’ve learned that wig/toupee tape can do the trick. We’ve ordered some next-day, so I’ll let you know how that goes. Let’s hope it works, because I’ve already barely rescued the thing from the dog once so far.

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Pre-hearing aid

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Post-hearing aid

This morning was Lina’s first physical therapy appointment. It was… not her best showing. She was exhausted, wailed the entire time and wanted nothing to do with anyone but mommy. But the good news is PT right now is really more for me, anyway. The therapist was able to identify some areas to focus on and suggest specific activities to do at home, which is pretty much the point. Lina loves to stand and extend and does not love to sit or move into a crawling position. She might like to walk before she crawls, which is not great, developmentally. So, we will be focusing on sitting and transferring to a crawling position.

I have a few new additions this week to my collection of parenting war stories. There’s the one about a three-year-old who decided, just as we were getting ready to walk out the door for Vacation Bible School, to smear himself, his clothes and the entire bathroom with bath soap. Or the one about the baby who rolled off our bed…again. (I know, I know. Please don’t call DCS on me.) Or the tale of a reliably potty-trained son who has decided to start intentionally peeing – and pooping, as of today – in his bed during nap time. I poured out my latest tale of woe to my dad today, and he suggested that we may be dealing with some jealousy issues as Lina’s needs begin to absorb more time and attention. I think he’s probably right. Figuring out how to deal with this is very much a work in progress.

There is also much to be thankful for this week. My kids are healthy and really an awful lot of fun. Corin and I have had funny conversations and good times reading stories and snuggling. He is so cuddly now, which I am making a point to appreciate while it lasts. Lina is making strides in her speech and motor skills almost daily, and her smiles truly light up my days. We have family coming into town tomorrow, and it should be a really fun weekend.

So, to finish out our week: Tomorrow is speech therapy at Vanderbilt, and then daddy will be home. Hallelujah.

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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