Sunday, March 15, 2009

A Very Big Day!

Okay, so I left ya with a bit of a cliffhanger last week. My sincere apologies! When I wrote the teasers into that post, I forgot that I was hosting my cousin for three days, or I would have written the conclusion to the story and scheduled it for posting while I was occupied with my company. We indeed are still anticipating a Very Big Day for our Li'l Empress on Monday, and we request your prayers to cover us for the Very Big Events of the day. Here's a run-down of the Very Big Day and what we know about the goings on. It's a long one today, so hang in there if you can!

Tomorrow, at 8:30 a.m. Li'l Empress is checking in to the outpatient radiology lab of CHOP's satellite services in King of Prussia. She will be sedated for a 2+ hour series of tests.

The first test they will perform is a CT scan of the right side of her head, looking for the mechanics that may or may not be in place for her right ear. We know that her outer ear is not fully formed (Microtia), and that the canal is not opened to the outer ear (Atresia). They are hoping to be able to see what has developed (and in what stages) in the inner workings of her right ear. This will help determine future courses of treatment for Li'l Empress, regarding reconstruction, bone anchored hearing devices, and so on.

The second and lengthiest part of the test will be an Automated Brain Response (ABR) test. Because her behavioral-based audiograms were inconsistent and inconclusive in her left ear over the course of the last 5 months, this test is necessary to determine what level of hearing loss (if any) she has in her left ear. One of the inconsistencies was that she responded to the stimuli too quickly the last time, showing us that she was anticipating the reward before hearing an actual noise. There were other, more technical issues that I'm still learning about and trying to understand. It's very common for the behavioral-based tests to be inaccurate in children under two. And our Early Intervention team will be doing play therapy with her each month to re-train her to respond to stimuli only when the stimuli are present, among other great things they will help her with!

This ABR will pump noises into her left ear (and if they find anything in the CT scan to suggest it, they may try to test the right ear too) and the audiologist will watch her electronic impulses respond in her brain. Picture little lights sparking up on an electronic map when you push the corresponding buttons. Simplistic, but a good word picture for what the techs will be doing. This test will also be used to determine future therapies, services and treatments for our girl as she grows. It will also give them a base-line to count upon in the event that her hearing changes in her life time.

Finally, we've been told to expect the Li'l Empress to be quite lethargic, loopy, dizzy, moody, and/or sad or mad for quite a while after the test. In fact, they told me to pretty much clear my calendar for all of Monday and most of Tuesday. Many moms even strap their little ones into the high chair or another kind of seat and let them veg out in front of the tv to prevent injury. Given how energetic and happy and bubbly she almost always is, this will be hard to watch!

There are always risks associated with sedating children, and we carefully weighed all our options when the doctors and audiologists presented us with the information. I'm so thankful for the CHOP staff who took so much time to answer my questions and give me details to research on my own. I had one nurse manager comment that she's never had a mom question the types of meds used to the same extent that I questioned her. I find that a bit frustrating and a little sad, but I know I am definitely pretty high on the "need to know" spectrum when it comes to my kids' health. I am no longer surprised by the things other moms don't question. I sincerely wish we could have pursued the non-sedated route for at least the ABR, but I know Li'l Empress well enough to know that I would not be able to guarantee a full two hour nap in a foreign setting under unusual circumstances. She's too much of a creature of habit right now.

So please pray for The Gang tomorrow. Specifically pray for my Li'l Empress - she is at the tail end of a nasty cold and we have been advised that there is a chance that they will not do the tests. While I know that's the safest thing for her, I'm also really ready for her to have them both and be done with it already. The anticipation and suspense is hard on this momma's heart. As always, thank you for the love and support you all have offered along this journey. In this blogging community, and in the sub-community of adoptive blogging moms particularly, I have found such empathy and encouragement. I appreciate knowing you all will hold us before the Father on our Very Big Day!


Salzwedel Family said...

You guys definitely have a big day ahead of you. I am praying all goes well and that Lil' Empress comes through everything fine.

Becki said...

You have my prayers for tomorrow and the big day that is in front of you. He will hold her in the palm of his hands. Good luck

Kevin and Violet said...

Good luck. Here's hoping everything goes well. You are in our prayers.

Kevin and Violet

adoptionroad said...

Our daughter just had the CT scan done last month for her UMA. She is 15 mos old and walking great, but the week following the scan, she was very woozy (to quote Madame Blueberry). Her physical therapist commented that she has regressed but now a few weeks later, she is back to her old self. She can turn on a dime again. It was good to know what we are working with in her microtic ear. We are relying on the ABR done in China. I'm glad you get to do another one.


Aus said...

Blessing Momma - praying for you guys! Just a couple thoughts - from a guy who wears a hearing aid in each ear - regardless of the results of the test, management of hearing loss is really nothing to be afraid of, we 'half deaf' types learn to cope and function very well (even if wives have to resort to children carring messages to us!!:>) Second and last - having had both of my adopted kids sedated to one degree or another over the past couple years - this will be WAY harder on you than on her, she may well be a hornet for a while - but it will be way way tougher for you than her - she'll be just fine!

More prayers - and hugs -

aus and co.

Anonymous said...

Praying for YOU this day!!! Maybe one day we will catch up...SPRING is coming...woooo hoooooo

Anonymous said...

ummmmmmmmm sorry forgot to add my name on the last post since I'm anonymous LOL

Hugs and prayers, Diane


I will be praying for all of you today. I am all too close to the hearing loss thing. Trevor goes on Wednesday and Thursday for 3 hours testing each day to figure out how in depth his learning disability is.

julie said...

It is Monday evening and I am praying all went well with the procedure and you are home and snuggled up together.


Norma said...

prayers going up for you

Kamandemmi said...

Please know that this family is holding you up in prayer as well. I can so re4late as Kamryn had her VERY infected tonsils and adenoids removed at the BC CHOP specialty clinic last year. They were awesome with her. I LOVED the docs and nurses. I was a BASKET case as we were also hoping that this procedure might also help to control Tourette ralted tic disorder. I know a little of what challenges you feel faced with and know that the Lord surrounds His kids and grandkids as well. Let us know how it goes.