Wednesday, September 17, 2008

ENT Appointment

Alyssa is 64 days old!
We had an unexpectantly busy day today. This morning Alyssa had an appointment with the ENT. We learned that she had very tiny ear canals and nasal passages. This is common with genetic disorders.
Alyssa failed a hearing test at a week old on her left side. Today's examination showed that the canals are so small on that side Dr. L couldn't even see her ear drum. This may change with age or it might not~it's a wait an see. Alyssa does hear out of her right ear even with a small canal on that side (the left side is considerably smaller). She even had wax build up! (I never thought I'd celebrate earwax). Her nasal passages are also small which accounts for her noisy breathing and congested sound at night. Saline can help moisten and reduce the sound but until she starts breathing from her mouth and nose- a skill most babies learn around 3 months-vs. being a primary nasal breather she will have nosier breathing.
We have a follow up appointment in a few weeks and she will have a cat scan then to get a base line of her oral and nasal cavities. Overall the appointment went well. We'll have more information later but it's good to know that at this point there are no serious concerns.

Alyssa and I quickly went into the store on the way home. I had her in a carrier on my chest. As I hurried along (cause as you know germs don't stick if you move fast *ha-ha*) I heard people admire Alyssa and her small size. I gave a smile and a polite laugh but did not engage anyone so we could make a quick get away. I heard one older woman say something like "oh new mom's they're always so nervous." If she only knew :0)

Alyssa did not enjoy her car ride at all. Monday she did fairly well but today she was a pistol. When we got home she wanted to be held and when I didn't she cried. So guess what I did..held her.

Our insurance company has denied the $65,000 bill for Alyssa's CHOP stay. Apparently this is typical, as they want it to be resubmitted. They itemize the bill each time it's submitted by the service provider, to look for ways to reduce costs or validate services. This must work well because a few weeks ago the bill was $70,000. The downside is that we get called by the service provider for a resolution or for payment. In other words they want us to bug the insurance company to pay the bill and to encourage this they bugs us. What a tangled web! It'll get covered..eventually
They have also denied a medication that would help ward off RSV which is a potentially dangerous virus for any baby let alone a medically fragile one. So I had to write an appeal letter and fax that over to them; in hope's they'll reconsider. Insurance is great until you need it but don't get caught without it! Ya know. I can hear the Kaptur's in the distance's only the beginning. I know they have dealt with things of this nature and more!
Anyhow just seems like the day came and went.

Welcome to the world baby Camille. Congratulations Brook and Jeff!

This week we are celebrating 9 weeks of living!!!


  1. What a survivior she is!! Thankyou for sharing your journey...praying for your family!

  2. what a coincidence. Vera has no hearing on her left ear and some on her right as well. They are so small on the left that they couldn't get a reading at all. but most important is that Alyssa can hear! Vera also doesn't like car rides. Congrats on reaching 70 days, right?