Night One & Day Two

Photos - Chloe in the rocker in our room, Chloe trying convince to let her sleep with me tonight, Chloe in her crib (cell).

First night without melatonin - Chloe did okay falling asleep. Staying asleep was a different story. About 1am, she woke up and wanted water & to come into my bed. I told her no as I didn't want to start something but she wouldn't let up. So...in an attempt to get some sleep she joined me in my single futon bed. After about 1.5 hours or so, we were both back to sleep and the nurse came in to check her vitals! Urgh! She went right back to sleep and my cell phone alarm went off at 6:30am (forgot to turn it off from Monday). We fell back to sleep and finally woke up around 7:15am.

Today was another very busy day. We went to a speech and language assessment where Chloe scored about 2 years & 8 months on comprehension. That was the good news! The woman was very impressed with Chloe's ability to understand things and thought she may have scored higher than the little girl who was here 3 weeks ago - she was four years old. The bad news was that she scored lower than a two year old for expressive communication. She could name most things but didn't know hers vs. his, colors, shapes, etc. She also doesn't complete very many words and this brought her score down as well.

We went straight from there to finish the hearing test she started yesterday and she officially passed in both ears! Dr. Potocki and a genetic counselor walked us back to our room from there and we talked until my next appointment with a psychiatrist. This was the most painful part of my day. Two hours of questions on my child's behavior - does she point or take you by the hand to show you something? When she points, does she look at you and then the object and then back at you again? Things you don't think about until someone asks you a million questions about it.

While I was at that appt., Chloe had an appointment with radiology. They looked at her kidneys, liver, etc. They also did an x-ray of her spine. From what they could tell, everything looked great (more good news). Unfortunately, we have to have a "do over" on the spine x-ray because she wouldn't cooperate while getting the side view. When Dianne & Chloe met me after our simultaneous appts., she told me that she just didn't want to make Chloe scream by holding her down. She said this as she led me to the ENT who put drops in Chloe's nose & proceeded to stick a long tube down her nose into her throat to look at her vocal chords. All of this while Chloe screamed because I was holding her down. More good news - Chloe's vocal chords look great! So do her ears and the back of her throat.

Chloe was pretty fed up by the end of our appts. (4:30pm or so). We got back to our room and the nurse wanted to take her BP & temp. She gave up!

Chloe & I finally did some girl stuff on our girls' trip. We went out to dinner & shopping. Coco got several new outfits & I got hairspray :). We went out for Thai food. Chloe ate ice for dinner despite having a huge bowl of fried rice in front of her. She did, however, have fortune cookies for dessert. After dinner we bought Quinn a little surprise & headed back to the hospital (about a 25 minute walk to shopping, etc.).

Tomorrow we have a lot more appointments and then we head up to the 25th floor where they will study here sleep in an environment in which it is all but impossible to sleep. She will have the wires attached to her head & they will put a cap over that. Then, they will put a cannula in her nose to test her sleep on different levels of O2. She might surprise me and sleep because she is one exhausted little girl. Three days with no naps!

She is bringing joy to tons of people down here. The nurses love her & Sasha! Sasha has had her blood pressure & temp taken 3 or 4 times. Chloe greets everyone that gets on the elevators or sets foot into our room. I couldn't find her at one point and I walked out to find her sitting on the lap of one of the nurses at the nurses' station.

Houston is so pretty. Green trees with leaves (not needles) and green grass (not brown) and warm, sunny (not cold, sunny) days. A preview of the coming months in Colorado Springs - I hope.

Knowing we have another big day tomorrow - I better get to bed. I sort of thought I would have a relaxing time while Chloe napped & slept and went to appts. Not so...haven't read one page in any of the books I brought. I did get to read a little bit of my Parenting magazine after Chloe went to bed & ended up in a laughing/coughing fit while reading this...

What words have come out of your mouth that, before becoming a mother, you never imagined yourself saying...

We don't play with our poo, please.

This is not yelling. THIS IS YELLING!

No more wetting your hair with your spit, okay?

Wow, vegetables, yum, yum, yum.

Nobody touch anybody ever again! (this is where I lost it!)

Get the plunger out of your mouth. Yucky.

Who couldn't add a few to that? Things like..."Back up so I can flush." or "Those are your privates, if everyone was supposed to see them, they would be "publics" - now put your underwear on!"

Okay - now I am just humoring myself. Thanks for all of your messages & prayers.

Love,

Amy