Day One

We started our morning by getting everything we unpacked all packed up. We took a shuttle to Texas Children's Hospital where we were met by Dianne - the study coordinator. The first three photos are in the hospital lobby. She showed us to our lovely room on the 10th floor. It is a big room with room darkening shades :), lots of closet space and a private bath. It's nicer than the Best Western than we were in last night but not quite as nice as a Ritz Carlton! See Chloe on the couch with Sasha (4th photo). Chloe's nurse is Sherrie & she was quite nice.

Our first appointment was a visit to the eye clinic. Chloe hates eye drops and they put in three different types. In the clinic we received bad news & good news. The bad news...Chloe's eyes are much worse (far-sighted) than the MD in Colorado Springs had said. The good news...the MD here would NOT put glasses on her at her age. He said that unless her eyes cross that the glasses won't do her any good.

After the eye clinic, Chloe couldn't eat until her swallow function test. Her test was at about 1:00pm. The 5th photo is of Chloe & Sasha on the way to the swallow function test. She as a real trooper. She didn't like the getting ready for the test part (see 6th photo) but she did a great job eating the barium filled pudding, barium drink and the barium covered yogos. She was so hungry. More good news/bad news. Good news...she didn't have any food go into or near her trachea. Bad news... she may need more therapy as she is not chewing her food very well. She doesn't push it back and forth across her mouth. She uses sort of a rudimentary chomping motion. The speech pathologist thought maybe she didn't like certain textures (meat) because she cannot chew them well. This, however, doesn't explain her love of crayons, marker tips, play-dough, or rocks.

The highlight of my day was meeting Dr. Potocki. She asked a lot of questions & told us a little bit about her & Dr. Lupski. She will be back tomorrow. Actually, this visit was trumped only by the fact that Dianne told us that Chloe is doing well compared to some of the kids they have studied. She isn't speaking any better but Chloe was a signing machine today (thanks Tamara). Dianne was impressed by this. She was most impressed, however, with Chloe's ability to jump!

Our third appointment for the days was a hearing check. Chloe was a good girl - sort of. She didn't tolerate the ear plugs that they wanted to use for the test but she did a good job in the sound room. She had to place pegs in a board every time she heard a sound. She did a very good job at that. She also passed the same test she had as a newborn hearing screening. They concluded that she could hear very well in at least one ear. Because she would not wear the ear plugs, she has to re-take the test in the morning. She was a little worn out by the hearing test and didn't want to cooperate. They said a "do over" would be best to determine if she was hearing primarily out of one ear or the other.

As you can probably imagine, Chloe had no nap today. So, at about 4:15pm, we came back to our room and I was in the quandary every mother faces. Do I keep her up because it is too late for a nap or put her down knowing it is too early for bed. I chose to keep her up and we went to the library. She looked at books filled with babies. Another little girl walked up to her & Chloe tried to show her a photo of the baby by saying "baby". The little girl screamed, "I am not a baby. Mommy, she called me a baby." At first Chloe didn't catch on and continued to try to show the girl baby photos and the girl kept yelling and saying she wasn't a baby. Then, Chloe caught on and rather than trying to show her baby photos, she just kept saying "baby" to the girl to get a rise out of her. It worked every time!

We went back to our room (see 7th photo - Chloe in bed eating dinner). She looked so little eating in that big ole' bed. After dinner, we watched a Brainy Baby show. At around 6:00pm the nurse informed me that they would like to put Chloe in a crib for the night. Chloe wasn't happy about that. I was okay with it except when they said that they would remove the real bed - bummer. You can't have both so I am on the "futon" in the room. She went around to everyone in the hallway (nurses, aids & housekeeping) and told them "nigh, nigh" and at about 6:30pm, Chloe all but passed out.

I was worried about Chloe going to bed without any Melatonin tonight but I don't think it will be an issue. She is already asleep. I just hope she stays asleep. I am in my "office". Yes, I have pulled a chair and the bedside table into the bathroom so that I can write this and finish filling out paperwork. I am tired too and will probably hit the sack in just a few.

Thanks for your comments via email & blog replies and thanks especially for your prayers! We are doing great so far! Tomorrow we see an ENT and I spend hours with a behavioral MD talking about Chloe. Cannot remember what else is on the agenda but I will update tomorrow night.