The Sound of Silence

The sound of silence is music to my ravaged ears and frazzled nerves.

Today I actually had to wear ear plugs in the house due to the incessant screaming. It seems the only thing developing with Jordan these days are her vocal chords (louder, longer, and more variable sounds). With almost two weeks until she's weaned from the ACTH, I'm wondering how my nerves are going to handle it, and how many Tylenol I'll have to take for my end-of-the-day screaming-induced headaches. It breaks my heart to hear her scream and not be able to console her. Add in the sleep deprivation (she's too hungry to sleep through the night) and yikes, it's a little rough around here. Even Avery seems to be acting out a bit when she's around Jordan.

Devon seems to have the magic touch, or the benefit of the evening session with Jordan. She's pretty calm when he carries her around in the Baby Bjorn, and he can patiently put her to sleep by falling asleep himself (see photo above). As for me, I can only get some peace if I'm holding her and letting her suck on my thumb. Remove my thumb or set her down, and off go her alarms. My thumbs are raw, and my arms are tired & sore (she's just a few ounces short of 20 lbs now, although she may be over 20 lbs with all the weight she's gaining on the 'roids -- check out those puffy cheeks!). I guess one benefit is how well I can type with one hand now.

Due to Jordan's recently consistant high blood pressure she started a new drug (Lasix) today. Perhaps getting her hypertension under control will help with the screaming (maybe she has a headache and the Tylenol just isn't cutting it). If it doesn't go down in a couple of days we'll add another blood pressure medicine to the mix. When we went to pediatrician appointments for Avery when she was a baby, the nurse would always ask if she had any allergies to medications (she still does, actually). I used to wonder 'what medications would a baby ever be on to be allergic to? I didn't think babies even took medications'. Well, I guess now I know that they do.

ACTH withdrawal: 3 days down, 12 days to go.

Interesting tidbit: Cost of ACTH: $2700 for a 10 ml bottle. Thank god Devon has good medical insurance and our copay is only $20. We're on our 4th bottle now, and that should see us through this round of treatment.