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.


Pre-hearing aid


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.

Physical therapy – or, she’s going to rock this, too

Lina had her PT evaluation this morning with a lovely woman named Abby at Hendersonville Medical Center’s rehab facility. Thankfully, this is a 17-minute drive from our house, and I am able to park a few steps from the entrance. Much simpler than a Vandy appointment, where it sometimes feels as if parking alone takes 17 minutes. Also, this place is around the corner from Target, likely to the detriment of the family budget.

Lina was a little show-off at her evaluation. She sat unsupported on the table for 10-plus seconds at a time, manipulated toys with both hands, smiled and “talked” to the therapist, and generally impressed her with her skills. This evaluation did not involve a quantitive scoring system like the speech evaluation, but the therapist was very positive and felt like Lina was doing so well. She said Lina’s muscle tone was not that low, and she did not feel there were any major delays to be concerned about. She felt that with weekly therapy, Lina will continue to make fantastic progress. (I was a little surprised at her recommendation for weekly vs. bi-weekly, but it sounded like that’s her standard recommendation. I may ask her about it at Lina’s first visit.) After the evaluation, Abby took Lina out to schmooze with the other therapists for a minute, and my girl cooed  and waved her feet around as if to make sure everyone saw her stylish sandals.

While Lina and I were busy charming Hendersonville’s PT staff, Grandma was watching Corin and Benjamin, who is staying with the grandparents for a few days. The boys had a blast playing in the sand box, chasing each other around the house, and yes, occasionally arguing over toys. I love that they play together so well, and I can’t watch them without imaging this relationship over the coming years. It always makes me smile.

Summer has been slow to arrive this year in Middle Tennessee. Temperatures are finally climbing, though, and Corin and Lina had the chance on Saturday to go to the pool for the first time this season. Uncle Justin and Auntie Katie have a lovely pool at their apartment complex, and Corin was beside himself with excitement about the outing. Lina finally got to wear her perfect polka-dot suit, and Corin had a blast kicking his way around the pool in his “puddle jumper” floatie. The water was still cool, but Lina was very happy to splash with Auntie Katie. Corin’s teeth were chattering and his lips were blue before he was willing to consider getting out of the pool.

Thanks to Uncle Justin for snapping a photo of Lina’s first dip while I was tied up back at the apartment.


Happy summer, everyone!

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.