Class, the word for today is...

laryngomalacia, and if that one is too easy for you to pronounce, much less spell, how about cerumen impaction, or ankyloglossia???

If you can't tell, I got to spend a lot of time at the ear, nose and throat doctor's office this week. I thought it was going to be a simple visist to look in his very tiny ears to see if we had fluid or infection. We did get to do that, and the great news is that there is no fluid or infection and his ear anatomy looks, quote from the doctor, "surprisingly normal." Whew, normal, haven't heard THAT word in a while. Seriously, this is very very good news. The jury is still out on his hearing, and we are repeating his hearing screen in February, and hopefully will be able to tell some results. If we are unable to get results at that time, the doctor told me that there is a different hearing test that requires sedation that we could try. Hopefully this will not be necessary. Quite frankly, with the noise the rest of my crew provides, what exactly does Andrew really need to hear at 6 weeks of age?? So, we will jump the hearing hurdles at the end of February.

While we were in the high-tech exam room, the doctor used a scope and camera to look up his nose and down his throat. Andrew did not think that either of these were a good idea and protested to the point of turning purple at the injustice of being poked and prodded. The doctor thinks that Andrew can pass air from both of his nostrils (again, good news) and was pleased that he could see up his nose. I did get to hear the "floppy" word again - quite a common word with babies that are Down's. Apparantly, the tissue at the back of his throat is floppy, and there is extra tissue around his voice box - thus the laryngomalacia diagnosis. This makes him sound like he has a cold all the time. He makes raspy rattling noises.

Ok, I tell the doc, does he out-grow this?

Oh, he tells me, he probably will sound this way for 6 or 7 years.

I have to tell you, that this almost made me swear out loud. 6 or 7 YEARS??? umm, so, how do I tell if he has a cold? (I thought this was more articulate than swearing)
I loved his answer: "green snot will pour out his nose." Oh, thanks.

So, moving on through the appointment. Doc wants to check to make sure he does not have sleep apnea - a condition where he either stops breathing while sleeping, or does not get proper amouts of oxygen during sleep. He has ordered a sleep study. When I tried to schedule the study, I was told it would be April or May before they can fit him in. I called the Doc back and told him this good news - thinking that if Andrew was not breathing while sleeping, we might want to find that out now - not when he is 6 months old. Gratefully, he agreed and they are trying to find a slot for him in the next few weeks. Next week they are going to try and get us an apnea monitor that we can use at night to monitor his breathing. I think this will help ME sleep better. They also suggest letting him sleep on his tummy which is a cultural no-no right now. Did you know that even diapers say "back to sleep" on them?? I have let Andrew nap on his tummy, and it really does help him breathe. Evidently it lets the floppy tissue fall forward instead of pushing back on his throat. I am waiting for the monitor before I brave a night-time sleep on the belly - even though I know I slept on my tummy as a baby and so did everyone else born before 1995.

Final issue of the doctor visit was Andrew's tounge. He has a tounge tie (that little thingy that is under your tounge - well, his is REALLY short) that they will clip, but not till later. Since he is taking his bottles ok, we are going to leave that alone for awhile. Oh, that is what ankyloglossia is - tounge tie (couldn't they just say tounge tie??) And, cerumen impaction - that's ear wax!

Well, that is it on the medical front for the week. I have to say, this doctor visit made me tired. There were such long-term implications. There were no easy or quick answers or fixes. I look at my precious, small baby and think, how can such big medical words be associated with someone so tiny and perfect? I was tired of waiting rooms, tired of new doctors, tired of being diagnosed with stuff I can't do anyting about, much less pronounce, and just generally tired. I am sure it is to be expected when you are 6 weeks post-partum with your 4th child who has been recently diagnosed with downs syndrome. Jeff took all the boys (yes, all 4 of them) to McDonald's for breakfast today and locked me into our bedroom so the twins couldn't crawl on me and let me stay in bed till 10AM. I wallowed in the sheets and it felt like a piece of heaven. When Andrew was only 2 weeks old, I was led to the scripture in Psalm 3, "I lie down and sleep, I awake again, because the LORD sustains me." I have held God to this promise this week. So, we breathe in, breathe out, breathe in, breathe out; one foot in front of the next. God sustains, and we move forward, and the grace continues to pour down on us.