Friday, June 27, 2014

Kimberly's One Year Gluten-Free-Anniversary

A year ago this week, my precious first born, Kimberly, was undergoing tests that are usually reserved for people much older than fifteen. She had already endured surgery to remove her gall bladder, numerous blood tests, various antibiotics, multiple doctor appointments and months (years really) of feeling crummy. The gastro doctor finally said as an afterthought, "Well, I guess you could try going gluten free." So she did. She began to feel better within a day or two. And my brave girl has never looked back. Not once in this past year has she eaten gluten by choice.  The dark circles under her eyes, foggy brain, and stomach troubles are gone.

We do not have a gluten free house, but I do try to make most of our family meals gluten free so that we are all eating the same things. She has her own cupboard which I try to keep stocked with things she has found that she likes.

This journey presented a steep learning curve for both of us. I have tried a thousand different recipes and finally feel like I am getting the hang of things. She has learned to advocate for her herself in a variety of settings so that she doesn't get sick. We have a weekly pizza tradition in our family and it has really been hard to find a decent pizza crust. I am so thankful for my friends at church (Elke and Jenifer) who have been walking this journey for a long time. They have given me so much good information and encouragement as I have tried to cook for Kimberly.

In celebration of this milestone (and because many are walking this same road) I thought I would share my top 10 tips for cooking gluten free. I am focusing on a mixed kitchen like ours where not everyone is on a gluten free diet. This may also be helpful if someone is coming over for a meal who is gluten free, or if you are taking a gluten free meal to someone.

1. We have separate cutting boards for gluten free and non-gluten free food. The gluten free ones are red. I sometimes forget and grab the wrong one, but this has been a helpful habit for us.

2. America's Test Kitchen has recently published a cookbook called The How Can It Be Gluten Free Cookbook. Everything we have tried so far from that book has been excellent. It is very thorough and gives the science behind the recipes. The waffles and muffins were gobbled down by my whole crew.

3. Find a local gluten free bakery. In Colorado Springs, we have Outside the Breadbox. They sell their bread at their own bakery, and also at several other places around town. I take apart the loaves of bread and freeze them in two slice portions so Kimberly can pull out what she needs. Their pre-made pizza crust is not too bad.

4. It is easy to make gluten free "cream of" soup. There are several casserole recipes that I serve often which call for cream of mushroom or cream of chicken soup. These products have lots of weird ingredients in addition to gluten, so I discovered that I can make a delicious alternative with the following little recipe:
     1 cup milk
     1 tsp. gluten free bouillon (Better than Bouillon is the brand I like)
     1 Tbs. butter or oil
     3 Tbs. gluten free flour
Combine the flour and butter or oil and cook for one minute. Stir in the bouillon and milk. Cook until thick. Use in any recipe calling for "cream of" soup.

5. Most Pamela's products are delicious. We especially like the pancake mix and the cake mixes. The coffee cake recipe on the back of the pancake mix bag is so good.

6. Some products are disgusting. And trial and error is expensive. But don't give up.

7. Jovial Pasta is very good. We just discovered this after reading about it in the America's Test Kitchen cookbook.

8. Gluten free specialty food is expensive. But a lot of food is, of course, naturally gluten free. Fruits, veggies, nuts (depending on how they're processed), cheese and meat are always gluten free.

9. Costco often has a lot of gluten free options that I don't see elsewhere. They have Tate's Bakehouse chocolate chip cookies that are really good. I also buy gluten free granola there that is about half the price of anywhere else. But, like everything at Costco, sometimes I'll buy it one month and not be able to find it the next. We recently tried Rice Rollers that everyone liked. They are like rice cakes in a cylinder shape. We have been dipping them in peanut butter.

10. There are some good apps that are helpful in finding restaurants (find me GF) or for scanning the UPC of products that are questionable (Shop Well).

I am proud of you, Kimberly, for your dedication to this new life style. It hasn't always been easy, but you have never given up. You are a tremendous example to me. Happy gluten-versary! And here's to many more!

Thursday, June 19, 2014

Large Family Life

Some people dream of having a big family and are thrilled when their dreams become reality. I feel like we stumbled into having a big family and still find ourselves a little stunned by the reality. This is due, in large part, to the way we built our family. Three the "old-fashioned" way, a baby from China to complete things. And then, three years later, two surprises from the Lord who joined our family at age nine and four. Those last two, Joshua and Isaac, have definitely kicked us into large family mode. And sometimes I feel like I am still adjusting over two years later.

There are days when I wonder why God thought it was a good idea to give me, an introvert if ever there was one, six children. I don't really like people. Yet, I am surrounded by six of them who actually expect me to speak to them all the time. I like these people who fill my world. They are fascinating, funny, and quirky. I love seeing the way they are growing and learning about God and the world. But me, really, Lord? And then He reminds me that His grace is sufficient in my weakness. And I unlock the bathroom door (surely I'm not the only one who hides there?) and I face them again with all of their questions, arguing, and commentary on things big and small.

Then there is the laundry. Eight people generate a lot of laundry.  Especially when one of them is a seven year old fashionista who regularly changes clothes several times a day and thinks each outfit needs to be washed before being returned to the closet. This summer, I am changing our system so that the older kids are responsible for their own laundry. Wish me luck.

The whole issue of food also looks different now that our family is large. I shop at Costco and buy enough to stock a small restaurant. Andy recently bought me larger pots and pans, which have been a big help. My three Asian children think American breakfast food is unacceptable so they eat Ramen noodles, grilled cheese or fried rice most mornings. I buy two of everything at the grocery store and know the clerks by name because I go there so often. I often think I have cooked enough to have leftovers, only to find that there are no leftovers at all. Three of our children have some anxiety about being hungry and not having enough food. So my purse is usually filled with a variety of snacks. Before we ever leave the house, they want to know if I have a snack with me. I always do. I can double recipes without a second thought and run the dishwasher at least twice a day. Cooking and cleaning up after meals is a lot of work, but I am thankful for the privilege to fill these  tummies and share precious time around the table.

Is it weird that we have a schedule for seating in the van? It would be so simple if they would just volunteer to sit in the back row. But instead we have a rotating schedule that resets each Sunday. I write it down in my i-phone so no one can argue or "forget" if it is their week. Speaking of the van, it is two years old and already has over 30,000 miles. Almost all of that is going back and forth to schools and doctor appointments (and Costco). And no matter how often we clean it out, it seems to generate trash at an alarming rate.

The children have all learned a poem (several years ago for the older ones, and recently for the younger ones) about Mr. Nobody.  It starts like this: "I know a funny little man, as quiet as a mouse, who does the mischief that is done in everybody's house." It goes on to tell how he's the one that's responsible for the broken dish, the spill on the carpet, the open door. Yes, he lives here.

There is more I could say about life in our large family (the copious amount of toilet paper we use, for example) but the most important thing that I am seeking to remember is how blessed we are by each one of our precious children.
Josiah (11), Amy, Andy, Caleb (13), Kimberly (16), Joshua (11), Isaac (7), Moriah (7)
(This is the small window of time in the year when I have two sets of twins!)

"Your wife will be like a fruitful vine within your house; your children will be like olive shoots around your table. Yes, this will be the blessing for the man who fears the Lord." Psalm 128:3

Tuesday, June 17, 2014

Isaac Hui

Psalm 139:15
Wonderful are your works; my soul knows it very well. My frame was not hidden from you when I was being made in secret, intricately woven in the depths of the earth.

We recently celebrated Isaac's 7th birthday. Breakfast in bed, presents, root beer floats with grandparents all made it a special day for him. Birthdays are always a time of reflection. So I   thought I would record some of my thoughts about him at this time, especially from a medical standpoint.

When Isaac came home to us from Henan, China just over two years ago, there were more questions than answers about his medical history and status. Many questions still remain unanswered, but in the daily rhythm of our lives, the questions are less important than the joy of parenting this unique child.
Isaac's funny gait (picture a speed walker), frequent falls, struggle with stairs and crooked smile all seem like such a part of him that is hard to picture him any other way. They are as much a part of him as his engineer-mind, his attention to detail, or his laugh.

When we go to the Children's hospital and see the team of specialists they shake their heads because they just can't figure our boy out.  With each visit there are more medical students in our room and more doctors talking together about his unique characteristics.

We have done several genetic tests. Yet each one has been negative. He has seen a doctor and his team from the National Institute of Health. This man's specialty is rare genetic muscle diseases. Now, our little guy's blood is being studied by a group of researchers. Will they ever have an identified gene or a name for his asymmetrical muscle weakness, his high palette, his weak neck?  Does it matter?

This is all made more complicated, or course, because we have no family genetic history to give clues. The one thing they have said is that he appears to have a myopathy rather a dystrophy. In other words, his muscle tone will probably not deteriorate, nor will it improve.

How do you explain this to a smart little seven year old? What does he tell his friends when they wonder why he can't run with them? What is reasonable to expect from him at home in terms of chores and self-care? How do we challenge him to do all that he can but also be reasonable in our expectations?

He has come so far since he joined our family. When we first came home together from China, he would stay in the same spot for hours. Now he is all over the house. He loves to race around the driveway on his little tricycle. He can walk quite a long way before he needs a break. He has gained some height and some weight, though he is still a tiny, skinny little peanut. His language is truly amazing to everyone. He has a very bright mind.

I am reminded as I watch him that we live in a fallen world where sin has impacted everything. At the same time, I am daily reminded of grace. The grace of Christ in our lives shines forth from those little eyes (one more open than the other). He has a family. We belong together. We will make as many trips to Denver to the Children's Hospital as we need to. We can use our handicapped tag and stroller and put bandaids on skinned knees. And the rest of the time...most of the time...we will just enjoy each other and the life that we share. As he learns more about Jesus and his special design for his body, we trust that we will have the wisdom to handle the other questions and challenges.

Sunday, April 28, 2013

Moriah Mei

There as been so much focus around our house on Joshua and Isaac that I wanted to stop for a second and think about one of our other kiddos.

Moriah's name means "seen by YAHWEH" and comes from Genesis 22, where Abraham is asked to sacrifice his son Isaac in the mountains of Moriah. When God provides the ram, Abraham names the place, "The Lord will provide."

Before Moriah was any more than an idea in our minds, the Lord gave us this name for her. Now she has been home for four and a half years and we continue to be amazed at this little one that the Lord has  given to us and how He continues to provide for her and for us.

I am sometimes asked about Moriah's special needs. The reality is that there is quite a long list. But if you interact with her for any length of time, you are likely to forget that she has any issues at all. She is bubbly, funny, affectionate, bossy (especially with Isaac), creative and tender hearted. She loves to think about God and focuses on the truth that He is always with us and will never leave us.

Double Trouble!

I'll never forget the day we saw her picture and information for the first time. Her name, Zheng Mei, seemed so small and her little eyes pierced our hearts. When we received her file, it indicated that she had a small thumb, hole in her heart and cerebral atrophy. We didn't know what that last one meant, but moved forward truly believing that this was the little girl we had waited for.

Such a sweet little face!

The day she came to us in China, I had Andy come in the bathroom where I was giving her a bath and take a look at her back. There was a big bump on her spine that just didn't look right to me. After a long string of medical tests and appointments after we got home we discovered that she has VATER association (also known as VACTRL). The acronym refers to the different parts of the body that can be affected. In her case, her spine (kypho-scoliosis), her little thumb and her heart (which has pretty much healed on its own.) Another revelation to us was that the "brain atrophy"which we had kind of dismissed was in fact probably the result of being shaken. Another year and a half would go by before we would discover that Moriah is completely deaf in her right ear. Quite a long list of issues for a little girl.

Some of our first moments....I look happy, Moriah's not sure what just happened.

This is the "don't take my picture" face.

Moriah has spent a great deal of time in PT, OT and speech. She had surgery to implant a BAHA device to help her hear. She may still need spine surgery, though we are still in a wait and see mode. Her learning is not as fast as some kids, but she is spunky and determined and she doesn't give up easily. Her gross motor development has been slow, but she can now run and can almost skip. I have come to expect that her pace may be slower than others, but she will move forward in her own time. Her teacher told me recently that she hears Moriah trying to keep some of the boys in her class on track by whispering to them what they should or should not be doing. She has become passionate about art, to the point that two of my end tables are now decorated with her original artwork scratched into the surface. (Perhaps scratching your name into the surface isn't the best way to escape detection...just a thought.)

This is "Ok, you can take my picture, but I'll do a cheesy smile" face.

Happy smile after a trip to that magical place.

My two daughters in a Hutong in Beijing
Moriah and Kimberly share a special bond as the only girls in this bunch of boys. They have such a sweet friendship despite the ten years difference in their ages.

God saw this precious little girl, left by her parents on the steps of a hospital in Zhengzhou, China for reasons we'll never know. From there to the orphanage, to a Chinese family for foster care, back to the orphanage, to Swallow's Nest (an American-run foster home) and finally to us. (All in 19 months!) Such a small and insignificant person in the scheme of the world, but seen by God. Loved by God. Provided for by God. Given to us as a precious treasure.

Gotcha Day #4!

Sunday, April 21, 2013

Love Comes Softly

Remember that book? I think I was in eighth grade or so when I first read it. We have since enjoyed the movie and the subsequent ones. Lives were thrown together out of necessity and there was much grieving and pain on all sides. But slowly, slowly hearts began to open and love grew. In some ways the main characters (Marty and Clark, wasn't it?)  gained a richer love for each other because of the grief that brought them together.

I feel like this is a good picture of our lives with the boys. Our love for each other has grown slowly, almost imperceptibly at times. We have to consciously look back at how it was at first to remember how far we have come.

We are also aware of how far we still have to go.

Yesterday, Josh seemed fine when I picked him up from school, but by the time I sat down with him to help with homework he was hiding his head and crying. It took me several minutes to get him to make eye contact with me so that I could try to figure what was wrong. Turns out, he was devastated because a few days ago, I told him that I would get him some gum next time I went to the grocery store. I went to the store yesterday while he was at school but completely forgot about the gum. I know it was not about the gum. It was more of a question of "do you love me?" and "can I trust you?" It brought into focus again how fragile he is. It provided a good opportunity to talk about how much I love him and yet how even when I try my hardest, I will fail him at times. I reminded him that God will never forget a single promise he has ever made. We joke about my "old brain" and how it is easy for me to forget things, but that doesn't mean I don't think about him and love him. Today I had to take him out of school early for a doctor appointment so we stopped at Walgreens and he picked out some gum. I apologized to him again for forgetting the gum and reminded him that God is thinking about him all the time and will never fail him.

This is just a small example of the sort of thing that happens often around here. 

Isaac's recent challenge has centered around asking for what he needs. Kids who grow up in institutional settings often lose their voice. As babies, they cry for food or clean diapers or the reassuring touch of an adult. When no one comes, they eventually stop asking. Isaac will say (in a very small and timid voice), "I sure am thirsty." or "I wish I could have some milk." So we are working hard to teach him to use his words to ask directly for what he needs. "May I please have a drink?" It's a weird thing because he knows the words to use, but it takes confidence to express them in a polite but direct request. It comes down to trusting that we will meet his needs. 

Two cheesy smiles!

In addition to learning to love us, these two are learning how to be siblings to each other. It's not always easy, but we see the Lord at work as He grows love for one another in their hearts.

Forever Family....

We are daily reminded of our need for the grace of the Savior. How could we meet the challenges of even one day without Him? We have confidence that love will continue it's soft journey into our hearts because the Author of this story is love and He does all things well.

Friday, August 10, 2012

Living Tall

We have watched Joshua gain a lot of mobility lately. He is moving around the house with much more speed and agility. But we are noticing something. He still walks just like he used to. He is bent to the side and pitched to the front. He holds his head to the side. At first I wondered if something was going wrong. Maybe the rods and pins have slipped and his spine is curving again? We notice if we tell him to straighten up, he can. And if we remind him to hold his back straight he least for a minute. Finally, I called the doctor and asked about it. They said that this is a very common problem. We just need to remind him to stand up straight and we will get started with some PT as well. His muscles must be retrained to accommodate his new position.

It made me often do I "walk crooked" in my Christian life? How easy it is to forget the price that was paid for me to be healed? Christ's precious blood was shed that my heart might be whole. Yet, I forget my Redeemer and walk in the crooked way of selfishness, worry, and complaining. I slip into old patterns of behavior. Maybe those sinful attitudes feel more comfortable and familiar. Just like Joshua has to be reminded often (many times a day!) to stand straight and tall, to put his head straight, I also have to be reminded. I am a new creature in Christ.  Josh's muscles have to be retrained, and I must retrain my heart and mind to think on what is true, noble and right. It is time to make a greater effort to spend time in the Word and prayer. There I know I will find the encouragement I need to live in newness of life.

And with the Lord's help Josh and I will work together to be who we really are.

Wednesday, August 8, 2012

The BIG Surgery

When we met Joshua in China, we talked with him (through a translator) about his back. We told him that he would have surgery that would make him straight and tall. I still remember his big smile. So this day had been long planned and anticipated.

We have had multiple meetings with the surgeon, so many x-rays, an MRI and CT, but finally the day had come for Joshua's BIG surgery.

We went to Denver on July 11th in the evening. My sister came and stayed with the other kids. Josh cried as we pulled away from the house and it was all I could do not to join him! We assured him that we would soon be home again and that all the other kids would be there waiting for him. Andy told him that this would be hard, but not as hard as some things that he has already been through. "You were all alone when you had to live at the orphanage, but now you have a Mom and Dad and we are going to stay with you all the time! We are all going to come back home together!" Makes me cry now just to remember Andy saying that to him as he put him in the car. He quickly calmed down and we tried to chat about the scenery and whatever else we could think of to keep the mood light.

We spent the night at the Ronald McDonald House, a wonderful place.  We arrived at the hospital bright and early on the morning of the 12th.  We were the first ones there. Joshua went into surgery about 8:00 and then began the longest day of our lives. My parents brought Kimberly and my niece, Sophia up to visit for awhile. Our pastor and assistant pastor also came and sat with us for a little while. I knew that people all around the world were praying for our boy. What a comfort that was. The nurse came out every two hours and assured us that things were going well, just slowly. Very slowly. She was awesome and we discovered that she was a nursing school classmate with my niece, Gentry. She always asked us how we were doing and encouraged us to eat and drink. She was such a comfort to us.

Dinner time came and went. All of the other families who were waiting were moved either to the patient rooms or sent home. The cleaning staff came and went. It was just us and security guards who  would walk by from time to time. Finally, at about 11:00 p.m. the doctor came out. He looked like he had been working out! He was sweaty and looked so very tired. But he was elated. He said that Joshua's spine was quite rigid and gave them quite a challenge. He was able to correct his spine from a 138 degrees to just 38. Truly incredible. There was someone monitoring his neurological responses throughout the entire surgery (we were able to meet her later and thank her). At that point, it was clear that his little body had handled all that it could, so they wrapped things up.

Josh went straight to the ICU where the sight of the blood and all of the hustle and bustle around him on top of the exhaustion was almost more than I could bear. I left fairly quickly to sleep at the Ronald McDonald house while Andy bravely stayed through the sleepless night. People were there constantly monitoring our precious boy. He looked pretty rough with his breathing tube still in, and tubes and wires everywhere.

poor baby! Hardly looks like himself under all of that.
In all, we spent eleven days in the hospital. (I think it was six nights in the PICU and five on the pediatric floor...honestly it's a little fuzzy now.) Many people who had been part of the surgery stopped by to say hello. He had made quite an impression on them all. Each day he made progress until he was disconnected from everything and sent home. He was still pretty fragile and made me nervous, but we were so glad to get home.

working with the physical therapist to sit on the edge of the bed. Oh the pain!
Standing up! With Dr. Bess and Audra Braun, his P.A.
This is John, a surgical nurse who refused to leave when his shift was over. He insisted on staying in the OR until Josh was all done. He visited with Joshua twice more while he was there and gave him a hat to match his (except with lizard on it!). 

We have been home two and a half weeks now and he is doing so well. He tires easily, but he is getting stronger each day. He looks amazing.

It is hard for him to remember to stand straight. It is as if his body has been crooked for so long, that it still wants to go that way, even though his spine is straight. He tends to cock his head to the side as well which is how it was before. We keep reminding him, "you're straight and tall now!" And then he will straighten up. He has been very brave and kept up a cheerful attitude most of the time. I think the recovery is wearing on him now as he would like to be able to do more.

Thank you so much to all who prayed for us, cared for our kids, brought us meals and encouraged us in so many ways. I especially remember one night when he was really uncomfortable in the hospital and I sent out a quick "please pray" message on Facebook. Immediately, many people responded that they were praying for him. I was so encouraged.

This little boy has a story to tell and we look forward to seeing all of the ways the Lord will use him. We were so impressed with all of the staff at Presbyterian St. Luke's and especially Dr. Bess and his staff. Glory to God for his great mercy and grace in our lives!

definitely making progress here. Look how comfy he looks just sitting there.

Here are before and after x rays from the front. See the tiny space that was left for his lung before the surgery? No wonder he got winded so easily. There was great concern that he would get pneumonia afterwards, but the respiratory therapists and doctors worked so hard with him and we avoided it. 

And from the side. 

Home at last. Is that how the walker is supposed to be used?

Noodles at home. Yes!