A Crap Rett Day

Anna hasn't been herself the past few days... Irritable, lethargic, vomiting, stomach pain, cramping, crying, lots of frowns, refusing to eat and worse sleep than usual. At first I thought it was the adjustment from a week away to getting back in the swing of things. Instead, her condition worsened.

Today, after no help from her GI who I've been on the phone with the past 5 days (or I should say his office staff, boo), I messaged a few Rett moms with Anna's symptoms and asked, what could this be? Every single one nailed it on the head. Either a bowel obstruction or constipation, all too familiar in our girls...

I demanded (such a strong word, but honest) an x-ray of her abdomen. I think to get rid of me, the GI called in the prescription for it. Low and behold, poor Anna was all backed up with serious constipation that the doctor said it would take a while for her colon to return to normal.

I could wallow in this crap (literally) but after a fleet enema and some other tricks in our pocket, she is cleared out and getting rehydrated. She kept down more fluid in the last 3 hours than she has in 3 days. I was so thankful to be able to shoot off this message and get responses - correct ones - within, literally, minutes.

She's sleeping peacefully, now. Thank the Lord. I should probably head that way soon.

The last few days, but especially this one, have left me so emotional. Happy to have dear friends in Rett Land. Sad though when Rett rears its ugly head.

Anna's lost about 2 pounds through this whole ordeal. 2 pounds in 6 days. On such a tiny gal, it makes a scary difference. She was so frail looking, so skinny. I hope to fatten her back up this week, hoping this is over.

Everything is magnified with her... So sensitive, delicate. My little porcelain doll.

I can't wait for her smiles and laughter to return. I missed it the last few days.