Friday, December 10, 2010

Curve Ball

Sophie had her first appointment with CHOP today (Children's Hospital of Philadelphia). They have a satellite office closer to our house than the big hospital in Philly, so we went there. The visit was to establish a relationship with her new ENT (Ear, Nose and Throat doctor). She had tubes inserted into her ears in March of 2009 and recently her pediatrician couldn't see them during an exam (no big surprise there as most docs can't). We needed to see if they were actually still there.

Like many people with Down syndrome, Sophie's ear canals are very narrow making it difficult to visualize the ear drum without a trained eye and special equipment. Dr. W took a look after clearing out a lot of wax and her tubes are still in place and look good. He surprised me by sending us off to audiology for a behavioral hearing test right there and then. During the last two auditory tests at St. Louis Children's Hospital the audiologists said her hearing appeared normal in the conversational level but showed a mild loss in the lower decibels. (in these tests the audiologist trains the child to turn to a stimulus - a light and toy that makes noise when they hear a sound. Then the audiologist just plays the sound to see if the child will turn to it for the reward of seeing the toy, etc.)

Today the tympanogram showed that the tubes were clear (a good thing) especially as she has a cold though it hasn't migrated to her ears (knock on wood). However the behavioral hearing test showed mild hearing loss in both ears (more loss in the right than the left). The loss is in the conversation range and the higher tones which is different from what the last two tests showed at St. Louis Children's Hospital. Of course, this was done through a behavior test with a little girl with few words and a developmental delay so they can't be certain about the accuracy of the level of loss without further testing.

In February we will head to Philly to CHOP for a sedated ABR to confirm or rule the loss out and to find out about each ear specifically. If the loss is confirmed, hearing aids may be the next step. However, I don't want to get ahead of myself, so I'm trying to reign my thoughts in about that until we know for certain.

My blog has been quiet lately. Writing daily in October really burned me out and I have been working through a lot of old and new personal ~stuff~. I've written posts I haven't published. It's always a trick to know what to share in such a public venue. Blogging has been my outlet and not feeling motivated to write or comfortable in sharing has been something I've been trying to work through.

A recent development is that Helena (who is 18 months old) has surpassed Sophia in vocabulary. While I knew it would happen eventually, adjusting has been...interesting. Mark and I have also both been very homesick. We are saving to buy a house, so we decided not to travel back to the midwest for the holidays. Thankfully family is coming to us. Mark's cousin Greg is staying with us for a while until his new place and job are ready in Jersey. Mark's parents are coming up in the next few days and later next week his little bother will be here. It will be a blow up air mattress slumber party and we're very excited.

So, tonight as I digest the latest curve ball that we've been thrown, I'm trying to keep it all in perspective. Hearing loss is something that we can work with. It is not completely out of left field given Sophie's DS, though it did take me by surprise. I will try and focus on being thankful for our awesome health care and doctors. I am thankful for the opportunity to catch it early, for those with DS who have come before us who have taught us to screen for things like hearing loss at such an early age, and for the amazing technology to help if her hearing loss is confirmed.

our home as taken by iPhone

an avalanche of Christmas bears (2 from 1987!)

Speedy, our hotly debated Elf on the Shelf (but that's another post)

Decorating the tree as captured by the iPhone



Brandie said...

I don't know how reliable the behavioral tests are. I hope everything turns out ok. Ah, so many things to worry about.
I have to admit, I got a lump in my throat reading about Helena's vocabulary. My son will be 1 this month and I keep thinking about how much he's going to change in the next year before he turns 2 and wondering if he'll be talking more than Goldie. Maybe they'll both be talking my ear off!

Anonymous said...

Things will be okay. We will handle this and make the best of every curve ball, fast ball, slider and change up that is thrown our way!
Much love to you and yours,
the prairie

ps...nice to see speedy around, hehehehehe

Anonymous said...

Aww man! Wish you were here still so we could share that wine or beer and commiserate together...Sophie's hearing will be fine-like you said, a curveball but it seems that we are getting pretty good at hitting those back out of the park. Understand completely those unpublished posts-William is forcing me to deal with things that I thought I had dealt with all ready.....hugs!

Counselor Continuing Education said...

Love the name and layout of your blog. Well done!