Tuesday, December 29, 2009

Snow!
















Yesterday it finally warmed up enough to go outside and play in the snow. Granny and Poppy made a playdate and brought their own sled. In China, Rachel lived in a humid sub-tropical area so she had never seen snow until Christmas Eve. This was her first chance to play in it and she loved it! She would walk a few steps, fall down, and holler "Broke!" until someone came to rescue her. Then she'd flash a big grin and do it all over again. Katherine let Poppy pull her around on the sleds and tried to teach Rae how to make snow angels. It was great fun!

More Christmas
















Sunday, December 27, 2009

Christmas Evening











In the late morning, we headed to Aunt Robie's house 5 1/2 hours away. Not long into the trip I was struck hard with the stomach flu. Let's just say I have never been quite that ill and certainly never in a car! Despite the sickness, we decided to keep driving. It was a miserable drive for everyone.




By the time we arrived at Robie's I was feeling better. We had Christmas all over again with Robie, Granny and Poppy, and my aunt and uncle. There were piles of presents, as the relatives are even more generous than Santa. The girls had a great time. Rachel was thrilled to open presents, any presents. She didn't care who they were for or what was inside, she just likes presents! She made us laugh. A lot. Katherine was pleased to find gifts from China - things she had admired in the shops in Guangzhou.




We had a good time at Robie's. The girls strung toys from one end of the house to the other, but they had a grand time playing. We did jigsaw puzzles, read, played, and ate Robie's excellent cooking. I'll add more pictures after I borrow Granny's camera card!

Christmas Morning







The girls actually slept in on Christmas! Okay, only until 6:30, but they are often up at 6:00 on average days. Santa arrived and both girls were delighted with their gifts. Katherine got a new bike (her only gift request), but it was too snowy to try it out. Rachel got a kitty and carried it around all day. We opened our family presents and the girls played with toys for a while. Then we bundled up and headed for my sister's house.

Thursday, December 24, 2009

I'm dreaming of a white Christmas...




It doesn't happen most years, but we're having a white Christmas! After days of weatherman speculation, the Big Storm hit this afternoon with snow and lots of wind. It's nasty out! Rachel has probably never seen snow before and is quite fascinated with it. She stood at the window and watched off and on all afternoon.


Katherine bounced off the walls all day. Snow AND Santa are just too much excitement. It was a looooong day. We made snickerdoodles for Santa, listened to Christmas music, and read a lot. Eventually I dug out my old childhood Fisher Price people and both girls were entertained for a while.


It has been so much fun watching Rachel this holiday season. It's her 3rd December, but her first Christmas. She is in awe of it all. She loves the Christmas tree, Christmas lights on houses, pictures of Santa, snowmen, The Grinch, presents, and her Baby Jesus toys. I love her sense of wonder at it all.


Our church was one of only a few in town that did not cancel Christmas Eve services. So, we bundled up and drove through the raging blizzard to church. It was a small, intimate service and was beautiful. Rachel was quiet and relatively still the whole time - a small miracle. She oohed at the music and the candle light. She did try to blow out the candles - her only experience with candles has been on birthday cakes. I loved seeing my girls' faces reflected in the candle light. The past several years I have spent the Christmas Eve service longing for another child. Tonight I feel so blessed....


We came home and opened one present - pajamas, of course! The girls are in bed and Santa is on his way. It will be an early morning tomorrow!

Wednesday, December 23, 2009

Sugar High
















The girls and I started our Christmas break today. I was feeling brave (and patient) so I decided to try cooking with both girls at once. It was a grand mess, but a lot of fun! First, I let Katherine and Rachel demolish their gingerbread houses (they've been sitting on the counter for three weeks) and eat any candy they could pry off. Then we made dipped pretzels. Let's just say it was a good thing I waited until afterward to clean the floor! Katherine had to try out every single type of decoration and colored sugar. Rachel was so enthusiastic about shaking that she tended to pound the shaker on the pretzels until they were just a pile of crumbs in a pool of almond bark. These were some lavishly decorated pretzels! After we'd sampled the goods and I scrubbed the floor and counters, we took plates of pretzels to the neighbors. What fun!





Oh, Rachel has learned to ham for the camera and hollers "cheese". No more fake sneezes to get her to smile!

Tuesday, December 22, 2009

An ode to imaginary friends...

When Katherine was about 2 1/2 she invented a couple of imaginary friends, a brother and sister named Hingen and Tingen. Hingen was her age and her buddy and cohort, although always willing to let her be in charge. Tingen was younger and was nearly always in trouble for one thing or another. They were world travelers and snappy dressers (Hingen once wore light-up Thomas the Tank Engine pants!). Hingen and Tingen have "lived" with us for years and we have heard fantastic stories and vivid details of their lives.
Hingen and Tingen had all sorts of marvelous adventures. They breezed through events that were difficult for Katherine - staying with a babysitter, riding the rides at the fair. They sat in Tine Out far more regularly than Kate did. We could see what was on Katherine's mind by listening to Hingen and Tingen stories. When our beloved dog and Katherine's dear older friend Bill died within a week of each other, Hingen and Tingen's family members began dying repeated violent deaths (falling off cliffs, getting eaten by bears). Hingen and Tingen were playmates and substitute siblings for Katherine and sometimes just good therapy.
Over time, we've heard less and less about Hingen and Tingen. I've not heard a single story in six months or so, but Katherine is getting older, so it's to be expected. Last weekend I was in the car with the girls when I heard Katherine say, "Rachel, do you want to be friends with Hingen and Tingen? I've outgrown them." Rachel nodded, but I'm pretty sure she didn't get the whole concept.
So long Hingen and Tingen, wherever you are. You've been wonderful friends! We'll miss you!

Saturday, December 19, 2009

Family Gatherings, Part 1




My dad's family got together for lunch today. We rarely saw my cousins when I was growing up, but now that we are adults we make a point of getting together a couple of times a year. We always have a lot of fun! With the addition of Rachel, there are now 8 kids between the ages of 2 and 8 so it's always lively. The kids had a grand time playing and the adults sat around and chatted and stuffed ourselves with soups and dips and my aunt's sinful homemade caramels and toffee. One of my cousins has horses that are so tame she refers to them as "pasture puppies". Katherine the horse nut was delighted to get to feed them carrots.

Family Gatherings, Part 2







My mom's family met this evening for our traditional Christmas gathering. As usual, there were LOTS of people, half of them under the age of 12. Mom's family is from Holland and the only Dutch tradition that they kept when they immigrated was the making and eating of oleykuken, a fried fritter studded with apples and raisins and dusted in powdered sugar. We make them every year at Christmas and they are fabulous! Rachel got her first taste of oleykuken and loved it. Santa Claus stopped by for a visit. Katherine was the first kid to sit on his lap, but Rachel was terrified. She didn't even want to be in the same room as Santa. She was happy to open her gift from St. Nick though, and was thrilled with her "Melmo" doll and book.

The Nutcracker


Last night Katherine and I, along with Granny and Poppy and Aunt Robie, went to see The Nutcracker. Katherine first saw the ballet two years ago and has been madly in love with it ever since. She loves the story, the dancing, the costumes, and the whole idea of toys that come to life. This year she was also thrilled to have an opportunity to wear the gorgeous black velvet dress that Robie bought her. The ballet was beautiful and we had a great time!

Thursday, December 17, 2009

1st ER visit

Well, I knew it would happen some day! Rachel apparently fell at home and injured her hand/arm. She falls all the time, so we don't know which was the injury fall. We noticed something was wrong at supper when she refused to hold a fork and tried to eat by putting her face in her food. She wouldn't bear weight on her arm or use her hand and cried when we rotated her wrist. This was especially concerning since she only has one hand!
I was worried enough that I took her to the emergency room. She had x-rays (the 2nd set in 3 days, although on a different hand) on her arm and hand. That was a major ordeal. She was terrified of the x-ray room and screamed and thrashed on the table. The x-ray tech suggested that she would soon "wear out". Yeah, right! I've seen her fight full force for 2 hours! Eventually, I climbed on the table and basically laid on her to hold her down for the x-rays. Then we waited forever while the ER staff dealt with a critical patient. The eventual diagnosis was just a "soft tissue injury". The doctor thought maybe her elbow had been partially dislocated, which would have made her hand painful and weak. In any case, everything is fine now. Whew!

Tuesday, December 15, 2009

Rachel had her appointment at Shriner's this morning. We were very impressed with Shriner's - kid-friendly everything, toys mounted to the walls in every exam room, cute decorations and characters everywhere, and very patient low-key doctors and nurses. It was a great place!
Rachel had more x-rays, photos taken of her and her hand, an occupational therapy evaluation, and a consultation with the hand specialist. She now has an official diagnosis. Her hand condition is called symbrachydactyly (sim-brae-key-dak-til-lee) and is a rare birth defect. It is not genetic (she can't pass it on to her children) and has no other associated illnesses or defects. The cause is unknown, just that at some point during the second month of fetal development something interrupted the blood flow to the "limb bud" that would some day be her left arm. Her arm and wrist appear to be entirely normal, she just doesn't have a hand or finger bones. Although I have long known from my own internet research that Rachel has symbrachydactyly, it's nice to have an official medical diagnosis.
The surgeon we met with, Dr. Goldfarb, got down on the floor to play with Rachel and sat with us until we had all of our questions answered! He knew we had been referred to Shriner's to investigate a toe transplant, but he is not recommending this surgery. He feels that the risks of surgery don't justify the limited finger function that Rachel might gain. She would lose two toes on one foot and perhaps gain some use of the "fingers", but not a pincer grasp and no real dexterity.
So, our decision was easy. Rachel will live with the same little hand that she was born with. We won't be cutting her perfect little feet or putting her through a grueling surgery and long recovery. She is wonderful just the way she is. In many ways, it's a big relief for us. Now we just need to find ways to adapt things for her, but we kind of like that sort of problem solving. We're glad we went to St. Louis and we're really glad we're home!

Monday, December 14, 2009

St. Louis







We made it to St. Louis! We dropped Katherine off at school and headed for Missouri, arriving here at a little after 4:00. Rachel did quite well in the car. I had LOTS of things packed for her to do. Her favorites (and the things that kept her attention the longest) were stickers, a puzzle, and fastening the buckle on my camera bag about 80 times.



Rachel's appointment is at 7:30 tomorrow - yeah, that's really early, but she's great at mornings. Keep us in your prayers.

3 months




Three months ago today we met Rachel. She was angry and terrified and very, very brave. Today she silly and ornery and almost always happy. The pictures tell it all!

Saturday, December 12, 2009

Shriner's

Steve and Rachel and I head for Shriner's Hospital in St. Louis on Monday. Rachel is scheduled for an evaluation Tuesday morning. This a part of our journey that we never expected! When we accepted Rachel's referral, we knew that she had a hand difference and that there wasn't anything that could be done to "fix" it. We were perfectly okay with that. We knew she'd end up doing everything everyone else does, just a little differently. And she has. We did want a diagnosis, simply because having a name for her condition seemed important. If nothing else, knowing the name of what you are facing makes it less scary.
So, we had our doctor refer us to an pediatric orthopedic specialist. We went and had x-rays done on Rachel's arm and hand. It was actually kind of cool to see her perfect little arm bones on the computer screen. When the doctor came in, she had already seen the x-rays and had brought the clinic's hand specialist with her. Both of them were visible excited, as in bouncing up and down. The doctor quickly examined Rachel's arm and hand and announced, "We think she's a good candidate for a toe-to-thumb transplant! We're sending you to Shriner's because they have a guy that does the surgery." Steve and I just stared in surprise. Now this was a new thought! Before we could formulate any questions, the doctors were gone and we were handed referral forms for Shriner's.
So, we've researched toe-to-thumb transplants. Obviously, we have a million questions. There isn't a lot out there about kids with congenital hand malformations who have had such a surgery. Apparently, Rachel is unusual because her arm and wrist bones and the associated muscles and tendons are all there and all perfect. She just doesn't have a hand or fingers. From what we have researched, doctors may be able to take 1 to 3 of her toes and move them to her little hand to make a "thumb" and possibly "fingers". Children recover from the surgeries quickly and most have functional use of the "fingers".
So, we are heading to Shriner's to see if the doctors there think Rachel's hand has enough of the basic structures to make such a transplant work. My Mom asked the other day what I hoped they would find. My honest answer? I don't know. Obviously, having the use of a thumb or even better, a pincer grasp could make a HUGE difference in Rachel's functioning. (Just think about going through your day with only one hand and how frustrating it would be.) However, it is a grueling (and somewhat gruesome) surgery and recovery. And Rachel is only 2. Then there is always the chance that it won't work. That, of course, would be the worst case scenario. So basically, we are having to make a decision by trying to guess what Rachel would some day want us to do. It's hard.
Please pray for us, for many things. It will be a looooong drive and Rachel is not exactly a fan of sitting in the car for any period of time. We have no idea what kind of testing will be done, but we suspect more x-rays and an MRI, which would require sedation. Rachel won't be able to understand what is happening to her or why. Steve and I want our endless questions answered, so we hope the doctors will be patient. If surgery is deemed possible, then we will need to make the decision of whether or not we want to proceed. Then we have to make the loooooong drive home. We need your thoughts and prayers these next few days!

Fun with Forks


Rachel finished her breakfast this morning and then amused herself by inserting the tines of her fork between her little nubbins and then waving her arm around, fork flapping. Katherine and I laughed ourselves silly over it!

Rachel finds lots of uses for her "little hand". She puts puppets over her arm and hand, weaves noodles between the nubbins, sucks her whole hand (which, since that arm is short, makes it look like she's inserted her arm in halfway to the elbow), puts stickers on her nubs and flaps them around, and, of course, sticks her nubbins up her nose. Her terrific sense of humor will go a long way in dealing with her hand difference!

Christmas Program




Christmas Program

Katherine had dress rehearsal for the church Christmas program tonight. She is so thrilled to be in a play. She has one line - "Is this the end of the Christmas road?" - that she says in unison with 3 other kids. She has insisted on carrying around her script for this one line, just because a script is such a grown-up item. The play is fun to watch - costume disasters, giggling preschoolers, kids reading their lines off of the back of props, missed cues, etc. Katherine is proud to wear her biblical costume, even if the headdress is annoying. I had to buy bobby pins to keep it on - not something I've ever purchased!

Sunday, December 6, 2009







It's beginning to look a lot like Christmas...

We are finally getting into the Christmas spirit at our house! We put our Christmas tree up this evening, much to Katherine's excitement and Rachel's awe. Rae worked and worked to get her little hands to hook on ornaments. Kate made sure that the lower half of the tree was VERY well decorated and that all like ornaments were right beside each other. We still don't have our outside lights up and with the weather forcast for the next week looking pretty miserable, we just may not have them this year.
Rachel went with Granny and Poppy to a local gingerbread festival on Friday and made her own graham cracker gingerbread house (with a lot of help from Poppy). Poppy said that as long as she had a gumdrop in her mouth she was willing to put candies on her house!
Katherine and I went to a cookie decorating party at our church yesterday. We had so much fun! There were all kinds of cookies, icings, and decorations and the kids were just turned loose to decorate. Katherine loved using the very grown-up icing bags and tried out every kind of sprinkle at least once.
Granny and Aunt Robie have had way too much fun shopping for Christmas clothes for the girls this year. Both girls have several darling Christmas themed outfits and Katherine has 4 or 5 Christmas dresses. It's too much, but they look so cute and are so excited about wearing their festive clothes.

I love birthdays!

the ladybug cake

The Ladybug Sisters

Sisters

Sisters
Jie Jie and Mei Mei

Park Pictures

Park Pictures
Peeking through the windows

Park Pictures

Park Pictures
Katherine and her toothless smile

Park Pictures

Park Pictures
The little one leads the way