school days

Welcome Grandma Patty!

This morning, Patty, Dalia and I drove toward Playlab, Dalia's daycare, at the Hannaford Career Center at Middlebury Union High School (affiliated with the Parent Child Center).

As we turned into the parking lot, Dalia sat up, eyes lit up, and said, "Howdy? Howdy?" -- Howdy is the name of her favorite teacher. She loves Howdy, she loves "school." She's been going to day care for the past 2 1/2 week -- went right in and played with the play-do and the dolls and the markers right away. We are SO fortunate to have this child!! And so fortunate to be able to send her to such a positive place. 15 kids, 4 teachers, some rotate from the Parent Child Center but three are there every day. The kids go for walks through town, they explore the new bridge being built over Otter Creek, they walk to the river and look for frogs, they go to the playgrounds.

Today, my friend, Pam saw Dalia on one of her walks. She waved to Dalia and Dalia waved back. Mama was happy.

Today, we also went to visit Dr. Laub for Dalia's second post-operative appointment. All looks fine, though there is one of the fistula (holes) that is clearly still healing. We leaned Dalia back to take a look into her mouth. I could see perfectly -- a sore spot ... and a tooth!! In the middle of seemingly nowhere (no other teeth). But Dr. Laub couldn't see... so, Grandma Patty made Dalia laugh by blowing up a rubber glove... and finally Laub confirmed.

Now - we work on her speech, or rather, SHE works on her speech with her speech therapist and on her own. We see if she still has the strong nasal sound with air coming out of her nose when she speaks. And we see the speech specialist on the Cleft Lip/Palate Team in the spring.

Her vocabulary is multiplying. She can now say several two-word sentences and three-syllable words. Moccasin. Dalia's room. Come back, sun! Grandma in there. Elmo sleeping. Night night, Mama.

aug 30 surgery... all went well

Dalia is asleep, it's 9:21 p.m. I'm relieved to say that her surgery went well today. No complications. Platelets normal, healthy. Brave girl. Dr. Laub repaired two pinholes in the back of her palate and one large hole up front. I won't go into the details here of how he did it... but I will tell you off-blog if you are interested. She was screaming when she came out of anesthesia... IV in an uncomfortable place, it took 4 adults to hold her down. Sound familiar? She was screaming for Mama and she called down when we arrived at her bed.

Took a bottle, slept, up, slept. Then, "walk" -- we walked down the hall and into the wonderful toy room she went. "Off!" i.e. put me down -- and she sat on the bouncing zebra with music. This was 2 hours after her surgery. Played more with toys in the room for a while - amazing sight to see this tough kid. Slept more, rode around in pink car, the red car and the blue chaise car. Ate 2 cups of ice cream and.... nothing came out through the nose!!! It's a first.

Now it's pain management and keep her full of liquids (soft foods). Home tomorrow.

Day care at Playlab starts next week!

Photos from Grandma Patty's - August 2010

Happy Birthday Dalia

For Dalia's birthday, her brother, Calder designed a colorful three-tier cake, made up of three of Dalia's favorite shapes -- heart, star and triangle. It was beautiful! He and Grandma Ginger baked and decorated it with colorful frosting, flowers and streaming ribbons. It looked festive in a Chinese way. Grandma Gin-Gin, Grandpa Ralph, Mama, Baba (Daddy), Calder, Henry, Blair, John and Virginia all came to celebrate. Truly a joyous occasion. I was thankful all day that this little girl has come into my and our lives.

She has grown so much since we met her on March 7th. Every day is a day to appreciate her! We gave her a Xi Yang Yang sweatshirt and matching backpack that we bought in Lanzhou, China, when we bought her some colorful sneakers. We kept it for her over the past 6 months. Good to see that even though Elmo is her new favorite, she still loves Yang Yang. ("Pleasant Goat" - her favorite Chinese cartoon character)

Dalia and I are at Grandma Patty's in Wisconsin. Today was a big day as she took a swimming lesson at the YMCA with 3 other little boys and their mamas, along with me. Ginger has taken her swimming in the Middlebury town pool - it's clear she's been ready for lessons. The Y kiddie pool is perfect, with a gradual ramp into deeper water. We kicked, we splashed, we submerged, we swam after balls, we sang songs. This may be the first class Dalia has taken. She was somewhat distracted by all of the action but I think she liked it. She loves to swim! She is leaning to blow bubbles in the pool water -- a huge step with her new lip. We'll return the next 3 days. She was the only Asian child in the pool.

She has been saying many more words, words with multiple syllables, and putting phrases together. "Hummingbird"; "Come back, sun"; "Grandma's house", "running shoes," "bathing suit", etc.

Her diet is rich in good foods - for dinner, she had salmon, hard-boiled egg, almond butter, a fresh peach, garbanzo beans, rice milk, water, and zucchini bread. She still loves popsicles and has learned to slurp.

She remembers names of people she meets and talks about them afterwards. What good company you are, Dalia!

1, 2, 3, go!

Dalia has learned this handy phrase. First picked it up while standing on the dock, watching listening to Tal and/or me look out at the pond, count down, and jump in. Now she uses it whenever possible! "One" is clear, then comes two beats, then "go!"

The good news is... she is back to her usual healthy, strong, funny self. She is trying new foods like almond butter, which she calls "ahm". She's having a blast every day, so busy playing outside in her sandbox, going into the pond occasionally, visiting the chickens in their newly renovated home - thanks to Tal, playing in the garden with Ginger, being held (and visiting chickens) with Ralph, going to the playground with Renee, picking and eating wild blackberries with Mama.

The not so good news is that her palate didn't close all the way -- there was a tiny opening which has since gotten bigger, after the surgery. So.. we will go back to Dr. Laub and Fletcher Allen for another surgery, outpatient if possible... (hopes not high) on August 30. Her platelet counts are normal now. However... she went back on the INH/Isoniazid medication for TB virus. We'll see later this month how her platelets are, hopefully still normal. She has endured many doctor visits and taking of blood.

I returned to travel for work the past 2 weeks, went to NYC for 2 nights last week and the week before. It was tough to be away, though I knew she was not missing me very much, as she was with her Dad and Grandparents. I walked in from having been gone and it for her was as if I had never left. I hope!

Will add more photos tomorrow.....

home from hospital

Whew. It was a long three days at the hospital. Mostly for Dalia, of course. The breathing tube was removed on Tuesday morning at about 10. She didn't cry at all - though her throat was so swollen that she could barely make a peep. And I do mean "peep." When she did finally try to say something, "help, Mama", she sounded like a squeeky baby bird. The day was spent with her in Tal's arms or my arms. Trying to get liquids into her, lots of sleep. We moved to the regular peds ward, Baird 5, and fortunately had our own room. Ate ice cream, slept, tried to play, cried, tried to stand, swaggered. Lots of "Hurt, hurt, owee," while pointing at her mouth or her ankles, where the IVs were placed.

In the afternoon, Dr. Rasczka, the infectious disease specialist paid us a visit. Turns out that there are only a handful of documented cases of INH (her medication) related to low platelet counts. And it turns out that her TB diagnosis is even in question (for reasons I won't go into). So, we may have been giving her INH for 3 months for nothing. But we don't know yet... we don't know for certain why her counts were so low. A big, thorny, painful mystery.

We slept through the night. Dalia on top of Tal, who slept on one of the pull-out chairs. I went to sleep on what was supposed to be Dalia's crib/bed, about 4 feet up in the air. Nurse Sarah came in at 11 PM and had a good laugh - and found another pull-out chair for me. We were awakened at 6:30 AM by a someone with a cart ... who came to take Dalia's blood. Ok, I thought, this is the interferon TB test. She took some blood, walked out the door, and I could hear her raving about how great a patient Dalia had been. Dalia looked a lot better to me - and I made up my mind that we were going to get her discharged that day. Only problem was, she wasn't drinking. We ordered a few bowls of soup.

Med students came in. Residents came in. Dr. Laub came in. Some vials showed up and sat on a chair. Then... another phlebotomist to take her blood. Wait a minute... didn't we already go through this?! So frustrating. The first time was to check her platelets, which were normal. This test was the TB test. I was pissed that the residents didn't have it together enough to only take her blood once. I asked the phlebotomist to come back when we knew that there weren't going to be any more tests for little D. An hour later, we called her. Tal and I, along with 2 nurses and 2 Child Life social workers with a cart full of bright lights, fans, and bubbles to distract Dalia, took her to the "procedure room" to get the other sample. It had gotten to the point that anyone coming into the room scared her.

It was good to be home, though we were all exhausted. Dalia was like a normal sick kid for about 24 hours, not much energy, though enough for Elmo. Since then, she's lived on Hummus (which she calls, "Humma"), soup, mashed potatoes, smoothies, and pediasure (ingredients: water, sugar...). Unfortunately, food is coming out her nose still. Not sure what this means but we are dreading another surgery sooner than we had thought.

Thursday, I went back to work - a shell. I am still exhausted.

Henry went to Maine and is already having a blast - kayaking, buying used books at the library, sailing, playing guitar. Yesterday, Tal, Calder, Dalia and I picked 14+ pounds of blueberries. We didn't even get to the raspberries!! Later in the afternoon, when Tal and Calder were at work doing some renovations on the chicken coop... Calder stepped on two nails. Another trip to the hospital! Poor kid - he is tough. Now he is on crutches, using his already injured leg to move around to protect his newly injured leg. Tal pointed out I'm the only on not injured. Fingers crossed....

cleft palate surgery

It's 6:30 AM on Tuesday in the Pediatric Intensive Care Unit and here we are with our little D. Dalia's surgery was yesterday. Both the ear tubes and the palate repair surgeries went well, nothing unusual, though her ears were terribly clogged with fluid on top of hardened layers of old fluid. But. She lost a lot of blood during the surgery, which lasted 4 and 1/2 hours rather than 2 1/2. After 3 hours and not hearing anything, I started to get worried. They think that her bleeding is a side effect of her INH medication (for positive TB), which causes a decrease in platelets. Her platelet count went down to 40; normal starts at 150. So...they kept her in the OR, gave her a blood transfusion and a platelet transfusion, then moved her to the PICU, with a breathing tube, sedation medicine in a drip and more as needed if she "wakes up", IV fluids and anti-inflammatroies.

She did wake up a few times when we were here last night. Man, is that little girl strong! As the nurses said this morning when switching over shifts, “Dalia gets up with a bang. I had to ask the parents to help hold her down. It took four people to hold her til we gave her the Versed.” “Dalia’s got game!.”

And since writing… she just woke up again for many minutes, blew through all kinds of additional sedation while Jeanne added more. The respiratory specialist is here, too. The pediatrician last night said “she’s a professional,” i.e. she takes a lot of sedation…

All of her nurses here, Pat (male), Katie (overnight) and now Jeanne have been wonderful. Her hair was sticking straight up and full of gunk -- blood, saline, who knows - it was punk rock. Katie washed it over night and she looks much better.

The positive aspect of her being sedated all night is that she wasn't able to squirm around and use her tongue to fidget with her palate. Palate had a chance to heal a bit. What we are hoping for is that the blood is clotting properly (and not going in to her lungs) so she can breathe on her own without bleeding.

So far so good. The (second) anesthesiologist from her surgery stopped by, as did Dr. Laub, her surgeon. He took a look in her mouth - looks good.

Sunday night (before surgery) we didn’t sleep too well as Dalia decided to wake up from 2-3:30 to have some conversation about the previous day’s events. “Horsey. Dalia. Horsey. Neigh!” then a review of select body parts: “Toe. Leg. Arm, Nose. Hair. Hair. Hair.” then family “Nana. Gaga. Dalia. Guh Guh. Hen. Cawker.”

We got to the hospital at 6 AM thinking that her surgery was at 7:45 AM. Turns out it was at 10:45. Dalia, her usual good-spirited and curious self, had a blast looking through magazines at colorful photos, practicing her words, looking at the art up and down the halls, going around the revolving doors, and then playing with the wonderful toys once we waited in the pre-op area. We played with 2 Child Life specialists, and our friend Gretchen came to visit again.

Tal and I spent the night in the “teen room” up on Baird 5, the pediatrics ward where Dalia will likely be moved to today. Amidst the playstations, the tv, the fusbol game, the air hockey and books, we slept on the pull-out couch. The nurses let me into the Ronald McDonald House family room this morning -- what a pleasure. I took a shower and made some tea for me and coffee for Tal, then rushed down to see Dalia.

Over the weekend, I thought, “Dalia’s biological parents must be some kind of amazing people. I could never have created this kid!” Sometimes I get really sad for them. But then I realize that those are my emotions. Maybe they were relieved to place Dalia in others’ care. I will never know. All I can do is be grateful, and hope that when they think of her, they believe that she is well loved and healthy, their special little girl.

… more later.