first CLP clinic

Last week, we went up to Burlington to attend a clinic sponsored by the State of VT, focused on children with special needs, in this case, kids with cleft lip and palate. Purpose was to meet in one room Dalia's team who will oversee her care, surgery, speech therapy, orthodontia, bone grafts etc. from now until she is all "growed up."

We feel very fortunate to have this opportunity. My insurance paid for it; but if we didn't have insurance, the State would cover it.

Audiologist checked her hearing -- below normal. Has fluid in her ears, no surprise as she pulls on them. Soon will see ENT, and will likely do Tubes in her ears when she has her next surgery on July 12.

Dental Hygenist - give her water from a cup, stay away from sippy cups (which is fine as she cannot suck through the top... yet) and avoid juice as much as possible, try to limit her bottle and do not give her her bottle in the crib. Less liquid = more food. We have been doing a "good job" brushing her teeth, and her teeth look really good!!

Plastic and reconstructive surgeon, who repaired her lip and hard palate 3/29. He is in charge right now and will be, along with the Speech Pathologist, for the next several years. Next surgery in July will be to close her soft palate, put tubes in her ears, and -- the surgeon told us after he looked at her -- repair her "scar" and give her a little more lip to her lip. She still has a tiny space on the left side of her mouth.

She will have speech therapy. She is elligible for state services, which ironically are facilitated through at the Parent Child Center, at which I am on the Board, and where she will go to Day Care in September.

Oral surgeon. He'll step in at age 7 or 8 to start bone grafts and implants and other fun stuff.

Genetic counselor. Since we are not her bio parents... genetic counseling will be more to check if she is likely to pass along CLP. Later, when she is much older.

Social Worker -. Spoke to us separately to get our feedback and hear how things have been going. Relayed that it's a lot, along with her treatment for Tuberculosis (will start 90-day course of medicine), blood tests for screening for communicable diseases, etc -- just a lot of appointments and follow up and payments and a lot for HER.

We will go to this Clinic 1-2 times each year and/or as needed (i.e. will meet with the Speech Pathologist again in 6 months).

At one point, Tal sat Dalia on his lap on a chair that leans way back. All 6 or so experts peered into her one tiny mouth. They were very impressed with her skills at reaching over several tiny toys without knocking them down to grab the one she wanted.

Her language is growing every day! She has perfected her name for our dog, Charley, to "Cha Yee"-- the ch sound is like the Hebrew sound in "Chai". She has learned Up and down, in and out, boom, boggle = bottle.

I was just giving Dalia her boggle when Charley walked in the room. She yelled, "Cha Yee! Yeow!" Yeow is the sound she makes for any animal, but it is most closely related to "meow."

She likes ink drawings (Beatles "Revolver", Shins "Wincing the Night Away.") She LOVES people.

Dalia was given a welcome shower/party last week by our dear friends. Again, we are SO fortunate. She played and laughed the whole time. When almost everyone had left, and only a few of us were there sitting on the couch, she came waddling out of the kitchen, with her body bent forward, her head sticking out forward, butt back, eyes squinted in happy silliness, with an Obama magnet in her mouth. So much fun, she is!

Dalia speaking Hebrew... gifts abound

Yesterday, I took Dalia to Munford House at Middlebury College -- where I work and share space with the most thoughtful, interested, generous, and fun colleagues. It was so good to see everyone, and Dalia loved being there! Mike came out with a special box... and gave it to her. Earlier she found the gnome that had been resting in the fake orange plant since Susan Veguez departed; Gnome is now on our dining room table (see photo from tonight at dinner). Rolling man with a huge mouth was a treat, as was a Midd Kid ball from Jennifer Q, twisty colorful wooden blocks from Jen B, lots of laughing and playing. I hated to pull her away.

Someone said, "you should just teach her a third language!" She has been picking up a lot of words in English but se doesn't try to say the Chinese words that I say to her. I hope that someday she will learn some Chinese and my speaking to her will make the learning easier in some way, or feel like something to which she is connected.

She says, "uh-oh," and is learning her versions of nose, eye, hair, ear, hello, goodbye, and Charley, the name of our dog.

Since she's into everything, and there are times when I need to stop her from doing something, she is hearing the word "no" a lot. I am trying to teach it to her by telling her "no" in a serious way when she does something "wrong". Usually she ends up squinting her eyes, smiling, and leaning forward at me, which just makes me laugh and want to hug her. The other day, she picked up the canvas carrier we use to bring in wood for the woodstove which had a pile of woodchips and sawdust inside. She twirled it around, scattering the mess everywhere. I ran over and said, "no, no, no." She walked away, then went back, picked it up, smiled, swung it around, and said "lo, lo, lo." Then laughed and laughed.

The "l" sound and "n" sounds are new for her -- she doesn't make an "n" sound very well yet. Now she uses the word "lo" for "no" in the right context -- except that she says it when she knows she is doing something naughty, "lo, lo, lo."

"Lo" in Hebrew means "No."

She is such a happy girl, laughing, talking, making faces and sounds. Today, when I took her to the doctor, she went running into the office where several women were working. Then running down the hall, smiling and laughing. Her doctor said, "I like her attitude." Then, later, "Where did she come from?" I often wonder this myself in amazement, as I think, "Is she really here forever? Is she really our daughter?"

Sunday night, we went to hear Brad Corrigan, Midd '96, former member of the band Dispatch, speak to the Middlebury Women's lacrosse team about his foundation, Lacrosse the Nations. Lacrosse the Nations teaches lacrosse and other sports to disadvantaged children around the world. Brad has taken LTN to the Managua, Nicaragua city dump, where an entire community lives. Dalia walked into Kenyon Lounge and Brad was standing right there. He took the green LTN bracelet off of his wrist and gave it to her. Thanks, Brad! On the way into the athletic complex, she saw the bronze Panther and roared out her best "rarrrrrr!" while future Middlebury students and their parents were having a tour. Go, Little Panther! www.lacrossethenations.org

Tomorrow we attend the Cleft Lip and Palate clinic sponsored by the State of Vermont, Dept of Children with Special Needs. We'll get a glimmer into what the immediate future holds for little D medically. Next surgery on July 12th for her soft palate.

Grandpa Don's watching over me

Dalia takes a bottle of formula every night. She drinks it with vigor, sucking it down, breathing hard, making her special sound while doing so. I try to sing to her while she's drinking to calm her down for sleep. With all the songs I know, I can't seem to think of many good ones at bedtime, brain = mush. So I've been singing "Taps," which I learned at Camp Birch Trail at Lake Pokagema in Minong, Wisconsin:

Day is done/ gone the sun/ from the lakes, from the hills from the sky/ all is well/ safely rest/ God is nigh/ and Goodnight

Then it goes into the spiritual "All night, all day, angels watchin' over me, my Lord/ All night, all day, angels watchin' over me."

The song is way too short. So, I've started incorporating the names of her family who have passed away, whom I know are looking out for her. "All night, all day, Grandpa Don's watching over me, my Lord…" And I add in Grandma Ruth, Herbert, Cynthia, T-bo, Bets, H.K., Eleanor, Izzy, Rougie, and on and on as I think of people. Usually she is asleep before I get back to Taps.

spring saturday

What a great day we had today. After several days of rainy weather, we ventured out in the brisk wind to the Middlebury Post Office so that Dalia could have 2 passport photos taken. No, I didn't need to do this today -but soon, so why not? We waited in line. Thankfully there was a poster at about her height featuring doggies and kitties on the stamps to be released later this month. One of the photos looked just like Garfield, our cat, and one looked a lot like Jackson, Blair's dog. We passed the time with barking and meowing, or, "Yeow" as Dalia says, since she can't really say "M" yet.

Many people have asked what language she speaks. She understands most of what I say when I speak Mandarin to her. She doesn't speak any Chinese words except making a sound, "Guh" which sounds something like "Gei [gay]" which means "Give [me]". In Tianshui, where she is from, they speak "dialect," i.e. some Mandarin and some words and sounds and pronunciations different from standard Mandarin. So, there are words she is accustomed to hearing that I have likely not ever heard.

She is definately starting to understand English. We've been teaching her, and she's been repeating as best she can, words for nose, eye, mouth. She received the most beautiful set of blocks from our friends Jill, John, and Nina which on one side have images of something with the pin yin, or pronunciation in Chinese using roman alphabet underneath. For example, there is a drawing of a mouth with a tongue sticking out with the letters, "she" (pronounced "shuh") underneath. So, I pick up the block, show it to her, say the word several times, and then say it in English. (The other sides of the blocks show how to write the character, have a number on one side, and pieces of a puzzle on the other, etc.). The day after I did this with her, I was in the kitchen and she brought a block into me, and pointed at her tongue. Never mind that it was the block for "chicken;" she remembered that we had learned the word for tongue. She just hasn't learned to make that sound yet.

Tal and Calder were in Ft. Ann, NY all day for soccer -- Tal coaching and Calder playing his heart out. I was dying to get out of the house, see people, and just do something, So, we took a second trip into Middlebury to go to the last 20 minutes of the College Men's Lacrosse game (Panthers lost to the Bowdoin Bears). She sat quietly on my lap for the first 15 minutes -- a rare and treasured time. Then we saw our friend, Sue Ritter, and dashed down the steps closer to the field and sat down next to her. Aunt Sue was thrilled! After a few minutes, Dalia reached for Sue. Also saw friends Pam Quinn and the Marlows. The sun was shining, the sky was clear blue, the view of the Green Mountains was as always from unparalleled. Dalia's first day at Youngman Field.

Tal came home at around 7 and took Dalia outside to feed the chickens, along with Gus, the friendly yellow lab we are watching for a few days. An hour later, I looked out the window of her room where I was straightening up to see Dalia being pushed in the wheelbarrow.

She is well, we are fortunate.

week after first surgery

(See more photos on most recent post)

It's been a week of challenging nights for little D.
Days seem to go pretty well...her personality is charging out of her tired body and a very sore mouth and nose. Today she finally made that cute growling roaring "raarrrr" sound we started with her way back 2 weeks ago outside of the White Swan Hotel, in front of the two stone lion statues, where we would play with her while waiting for a taxi to take us to a park, temple, or restaurant.

In an instant, she had a full lip and a new nostril. She can no longer breathe and drink from her bottle at the same time as her cute little hole in her mouth is gone. Her nose has been plugged up, with blood and mucus from healing and fighting a cold. Her ears are plugged with wax and fluid. She has a mustache made of hard glue which covers the incision on her lip and will gradually fall off. It has changed colors along with whatever has come out of her nose. Mostly now it is black, from all of the blood. She wakes up many times during the night thrashing about, arching her back, crying and making short screams we hadn't heard before. On the one hand, we are in the process of repairing her mouth so that she can speak and eat properly, her lip so that she can speak properly and look the best she can within society's norms (though we miss her cute little mouth hole and funny teeth on one side of her mouth). On the other had, leaving China, entering a new world, and having surgery within a 2 week period have undoubtedly caused her no short amount of trauma.

Last night, we woke at 5 AM to find ten palm-sized dark blood stains on the bed where she was sleeping/thrashing, long clots of blood, and her face covered in blood coming out of her nose and mouth. I had awakened to the sound of her strained breathing, a lungfull of air coming out of a pinhole in the lesser plugged nostril. After speaking to the on-call doc, with the bleeding stopped, we relaxed. Turns out it is not uncommon for a child to "tongue out" her sutures. Which it appears she did.

I went back to sleep, anticipating the day ahead, though fell asleep with fears. Tal stayed downstairs with her and they both fell asleep after 15 minutes. She had a fantastic day - very active with her brothers, a long walk with Mama, wrestling with Daddy, new toys, new clothes and gifts from friends and family. Great times at her toy kitchen, petting the kitty and doggy, and - finally - eating three meals (mashed potatoes, apple sauce, juice from a dropper, pudding) Many many gifts and notes received, which her Mama has felt deeply (but has not had time to write thank you notes... alas). Gorgeous, sunny, warm weather helped a lot.

Spending Monday night in the hospital gave me a renewed respect and awe for nurses and doctors. Wow. She slept for a few hours in the afternoon after her surgery (see photo on blog) and then awoke for 5 hours of restlessness. Daddy came up to be with us after a day of work and help. We watched a few cartoons, looked at photos of our China trip on the computer. Ate jello and had a bottle... then severe discomfort, morphine, and sleep from 10 PM to 4 AM... changed diaper, looked at more photos, sleep from 5-6:30 AM. For her. Mama observed far more during the night: a wailing roomate (4 year old little girl) - finally stopped crying after 3 hours at 11:30 PM; she moved out of the room at 2 AM; cleaning staff cleaned the room with full flourescent lights on at 2:30 AM; new roommate moved in at 3:30 AM.

Nurse Jess was amazing. So caring, so helpful. Helped change diapers - which is made difficult with an IV in her foot. Let me stretch my painful legs and back. Gave meds. IV was leaking, brought in another nurse at 3 AM. Very calm the entire time. At 6:30 AM, Dalia pointed to the door; we had her IV unhooked and went exploring around the hall. We were in luck - a lot of action on the floor. Dalia was in her element. People and activity. She pointed to the murals of animals on the wall which we rolled by in a wagon with Dad the night before. She remembered the images and made her animal sounds. We walked down to the Woody Jackson cow -- a favorite of hers -- at the end of the hall and made more noises. Had some strawberry ice cream while sitting on the floor outside the nurses' station.

Dr. Laub and team came by and were quite impressed that she had eaten jello, taken a bottle and had ice cream. Definately - time to go home! The med students, residents and one attending came by again at 9 to do rounds. One student named Kai, a woman from Burma, "presented" Dalia's chart, Grey's Anatomy style. I had tears in my eyes as Dalia was alert, making connections with all of the docs (15 women), smiling, pointing, reacting. One Doc pointed out her Mongolian spots -- not bruises -- my little Appaloosa. Kai came back to check on her a few times before we left.

When I drove out of the hospital, she immediately fell asleep. I felt incredibly worn, and immensely grateful. There were many, many kids in that hospital who need to be there longer, or more frequently, with diseases, some frightening and unsolvable. I truly counted my blessings for her and for myself as we slowly drove south on Route 7 back home.

Thanks to friends and family for checking in on her!

photos - china to ripton 2010