Half a Year with Ruth

It is incredible to consider that Ruthie has been home for half a year! It was a very busy sixth month with the holidays approaching and we are delighted to share with you what Ruth has been doing. 

She helped draw a face on her pumpkin to carve at Halloween. (And she is in underwear because... potty training. Which I’m happy to report is going tremendously well. She is fully potty trained during the day, only wearing a diaper at nap and overnight!)

Scooping out the goop was a lot of fun!

Watching funny YouTube videos with daddy and sisters. 

Ruth was delighted to have her hand traced on this big piece of cardboard. 

Pretend sleeping with Caroline in Carrie’s bed. These two are so sweet. Ruth has enhanced all of our lives, but the comradeship between Ruth and Caroline has proved the most delightful thing to watch unfold. Ruth means “loyal friend” and I have no doubt that these two sisters will be friends for life. 

I always have to include a crying picture because not every day is full of smiles. This was a morning she woke up and wanted daddy. But daddy was at work.

Ruth enjoyed creating a watercolor artwork. As you can see, she is always watching Caroline (and all the sisters) to see how to act and interact. 

We had a lot of appointments and errands this month. Ruthie was pretty worn out after one such trip and fell asleep in the truck while chewing on a straw. When we got home the girls couldn’t stop giggling at the cute picture she made. 

She loved “pin the tail on the horse” at Anne’s birthday party. 

We couldn’t stop laughing at Ruthie with a mustache. Her cousin Emma is so good with all the younger cousins. 

She’s getting really good at stacking blocks. 

If you can’t tell, Ruth loves to “help”. Whatever we are doing, she wants to be in on the action. Here she is washing dishes with Trent and Caroline. 

And helping make pancakes Saturday morning. 

And helping roll up Mama’s homemade rolls for Thanksgiving. 

She celebrated her first American Thanksgiving! We were with the Hess family on the Sunday before Thanksgiving. 

Chowing down for the dinner of leftovers. 

Hess family! Trent has two older brothers, and one sister-in-law. We are the only ones with kids, but it makes for a different kind of gathering for our kids as my side of the family is jam-packed with kids. 

Thanksgiving at my sister Audrey’s house was more subdued than usual as one of our other sisters and her five sons were not there. It was a great meal with lots of time for chatting. 

Ruthie thought it was so funny to walk around in her cousin, Matteo’s dinosaur costume. 

A Hess family tradition is to go shopping for our Christmas tree on Black Friday. On Saturday, Trent leaves for the mountains to go hunting, so us girls are on our own. 

Ruthie was so cute decorating the tree. She hung all the ornaments in one spot on “her side” of the tree. She is quite proud of her work and continues to point it out to us. 

We decorated ginger bread houses that their Aunt Sarah brought for them on Thanksgiving!

We baked our first of many batches of Christmas cookies with varying degrees of excitement. 

We spent a loooooong two hours in the Social Security office trying to get sorted out why Ruth’s social security card never came as it was supposed to. Thankfully we were able to get it worked out and should receive it soon. 

And just like that, another month passed and we are more in love than ever with our daughter. 

When I handed Ruth her 6 month sticker she hopped right up onto her chair in her room, ready for daddy to be silly while I snap away on my phone to get pictures. 

This is her cheeky grin. Baby Listens is one of her favorite books right now. 

Ruth finally had her evaluation with Early Intervention and we hope to be starting speech therapy in a couple weeks. She is so eager to learn and imitate and we look forward to giving her the tools and strength she needs to produce more sounds and clearer words. She knows a lot of signs (maybe 30) and we can understand about that many words. She does use a lot of substitution in her speech; most sounds that she cannot make she puts an /m/ or /n/ in its place. For example: baby is mayme. So while we know what she is saying, we need her to learn to make the correct sounds. 

About a week ago as I was putting her to bed and doing the same routine I do every night, ending with “Good night, Ruthie. I love you!” She said very clearly, “Nigh-nigh, Mama.” This was really the first time she has put two words together in a way that was clearly recognizable and it melted my heart. 

So happy half a year home, Ruth! We love you!

Thriving with Thalassemia

My final post for the month about Ruth’s medical conditions is one I was not familiar with at all until I started researching the conditions on the medical checklist provided by Holt. 

After looking into the condition, both Trent and I felt confident that we could care for a child with Alpha Thalassemia. This is characterized by low Hemoglobin, and anemia. I also have a tendency to be anemic and feel tired at times, but it has never been a huge problem other than the fact that I cannot donate blood. Basically, it’s not a big deal. 

However, Thalassemia has a large spectrum of variations depending on the globin chains and the genes that are missing, which I will not pretend to fully understand. Beta Thalassemia Major requires regular blood transfusions every 3-4 weeks. We did not feel that at this time with our other children this would be the best fit for our family. There are a few Thalassemia Centers in the US, and one of them is at Children’s Hospital of Philadelphia (CHOP) which is about an hour and a half away. 

When we were matched with Ruthie, we knew she had Alpha Thalassemia. The fact that she was diagnosed with this (which is a very common condition in southern China where she was born), is a testament to how dedicated her foster family was to her care. Her foster family was to get Ruthie to gain enough weight to be able to have her cleft lip repaired. It seems that they were waiting for this to be accomplished before making her file available for adoption. Once she gained the necessary weight, she was taken to do blood work prior to surgery. This showed low iron, low Hemoglobin. Her foster family was told to feed her iron-rich foods to get this number up. A month later, another check, still low numbers. And again the following month. Ruth’s foster family knew something was not right, and pushed to get this figured out. After further testing, it was revealed that she has Alpha Thalassemia. 

We are blessed to stay in communication with her foster family; Ruth’s foster sister created the above image. Isn’t she talented??

Ruth received a blood transfusion and then was able to have her lip surgery. 

I’ve blogged before that since coming home to the US, we have had further testing done which revealed the exact genes that are missing. Ruth is missing 3 of the 4 genes on this chromosome, giving her Hemoglobin H Disease. And the one gene she has is “abnormal”, with the specific trait called Constant Spring. This gives our girl a chronically moderate or severe anemia. Ruth’s normal Hemoglobin is 7.9, but a healthy child would have a Hemoglobin between 12 and 16. 

Photo from differencebetween.com for you science nerds. Circled in red is Ruthie’s condition, showing just how extra special she is to have her condition. 

Honestly, you would never know Ruth has low Hemoglobin by watching her actions. She appears, while quite tiny (stunted growth can be a problem for HbgH kiddos), energetic and healthy. Diet cannot solve this condition and she will never outgrow it. However, she is thriving. She will need to be followed at the Thal Center at CHOP every 6 months. From what I understand, HbgH can present itself differently in each person. Some need regular blood transfusions, some need a splenectomy, and some are easily susceptible to illness and do not recover well. It remains to be seen what will be Ruth’s case. 

We have much hope. Our hope is in the Lord. We know that He placed Ruthie in our family. We trust that He will provide whatever is necessary to see us through any difficult situations. While this may end up being a more challenging condition than we originally anticipated, Ruth is our daughter and we will go to bat for her to receive the best care possible, just as we would for any of our other daughters. We also are tremendously grateful to be a home schooling family. While it requires much of me, it also prevents us from many of the common illnesses that spread so easily in classrooms. It is especially helpful for Ruthie if she can avoid illness as she may struggle to recover from even common colds and need a blood transfusion. So far this fall a couple of the girls have been sick, but Ruth has not caught anything. But again, if she does need the medical care, we have our family physician and other medical teams available to meet her needs. 

*Ruth loves to “help” wash dishes. Trent deserves some sort of sainthood for his patience with these two washing after dinner dishes.*

I had mentioned to another parent that I am actually glad I didn’t know of the severity of Ruth’s blood condition prior to adoption. Since I don’t fully understand how our blood works and it is unseen, it is intimidating and I may have not thought myself capable of parenting her. But God. He is so good to us. He has allowed us to fall helplessly in love with our little girl. There is nothing I wouldn’t do for her. And if she someday needs regular blood transfusions? Well, I guess we’ll just learn to know the roads between here and CHOP a wee bit better, we’ll be good at schooling in the car, we’ll lean on our family a little harder, we’ll press in to the One true God a little deeper, and we’ll enjoy our lives. Together. Just as we are today. 

Some worry they may not be able to love a child they did not give birth to. I wonder where this fear comes from? My spouse and I share no blood, but I would do anything for him. We are family.  It is the same for Ruthie. We share no blood, but she is family. 

It is my fervent wish and prayer that someone will be touched by Ruth’s story, by her life, by her fiery spirit, and take the step toward adoption. We cannot imagine life without our girl. 

Ruth is really into holding hands recently. How can your heart not melt with her tiny hand clasped in yours?

Ruthie’s cleft lip and palate

When we were going through the medical checklist of “special needs”, cleft lip and palate was one I felt very comfortable with as I was already familiar with the condition. I knew people who had it, and had a friend who has two children adopted from China with the same condition.

Happy baby!

We were matched with Ruthie and of all the conditions we agreed to care for, finding out my daughter has cleft lip and palate was almost exciting because I knew she was going to receive such amazing medical care here, locally. If it’s something you are interested in, I would highly recommend the podcast you can find HERE from the Lancaster Cleft Palate Clinic. 

Cleft babies need special care when feeding. This spoon bottle was helpful for Ruth. 

As I mentioned in my last post, Ruth was born with unilateral cleft lip and palate. She had one surgery in China with an amazing surgeon who repaired her lip beautifully. 

Ruth in the hospital prior to her lip repair. 

Ruth post-surgery in China. 

She has had one surgery here in the states to repair her open palate. 

Post-palate surgery with mama to snuggle. 

Recovery for the palate is longer and more difficult than the lip, but Ruth was her chipper self in less than a week. 

Post-op care for the palate surgery is essential. Ruth could not use a fork or eat anything hard or crunchy for three weeks. This is really important so that the stitching inside the roof of her mouth does not tear or come out. If this happens, a fistula (small hole) develops and the surgery needs to be done again. Thankfully, Ruthie had a beautiful recovery and eating soft spaghetti with spoons for three weeks was worth it. 

Happy, snuggly sisters. 

Ruth is not missing any teeth but she does have one tooth on her cleft side that is very crooked. She also has a very large under bite. Both of those things will eventually be corrected with orthodontics. 

At this point we do not think she will need a bone graft because from what we can tell the cleft does not go through her gum line. However, the doctor said sometimes the missing bone is very small and may need done. This would happen after the baby teeth fall out and before permanent teeth grow in, so we’ve got several years ahead of us before this would be happen, if at all. 

Ruth does receive regular dental care which is necessary for even one as little as she since cavities are common for cleft kids. Thankfully she got a gold star at her recent dentist appointment and her teeth look good! We’re glad she LOVES to brush her teeth. 

Ruthie will definitely need years of speech therapy. We are currently sloughing through the system of IU13 to get speech therapy. Ruth has an evaluation at the end of November where they will determine what services she is able to receive (all we care about is speech but they will test motor skills, cognitive, etc.). After the evaluation we will hopefully get speech therapy rolling, but I imagine it will continue to be a slow process. 

We are all eager for her speech to be more clear. She is a darling girl, full of love and energy. But she can be quite unhappy and throws some really big fits when we can’t figure out what she is saying or what she wants. For now, we use a combination of American Sign Language, pointing/nodding, and the words we (but not everyone) can understand that she says. Sometimes we will look up a sign for a word that took us an especially long time to figure out that she was trying to say. 

Ruth is really clever, and so much fun to have as a daughter. Right now we believe we are done with cleft-related surgeries for the rest of her life (unless she would need a touch up on her lip/nose as a teenager). 

For now her needs are just a little extra than most 2-year-olds. Speech therapy and orthodontics are the only cleft-challenges that are in her foreseeable future. 

She doesn’t let anything slow her down, she’s too busy trying to catch up with all the things her big sisters are doing. Who knew I would be so grateful to have already parented one strong-willed child? I’ve got her number!

Considering cleft

As promised, I intend to write several times in November, National Adoption Month, about Ruth’s medical conditions.

Today I am starting with her cleft lip and palate. Ruth was born with a unilateral (meaning one side) right, cleft lip and palate.

Ruthie at 7 months old

 Cleft lip and palate is the most common birth defect, occurring approximately 1 in every 700 live births. If you are on Instagram I encourage you to search the hashtag #1in700 to see many beautiful people from around the world, and read their cleft stories.

Not all clefts are created equally. Clefts can occur as just the lip or just the palate or together. They can vary widely in severity. They can affect the gumline, but do not always. Children can have missing teeth, malformed teeth, and be prone to cavities. Some children have hearing difficulties or multiple ear infections which are frequently solved by putting tubes in their ears. Feeding difficulties are also common. Occasionally clefts occur in conjunction with another birth defect. 

What should you expect when adopting a child with cleft lip and palate? From our personal experience I would first of all say, joy! Second, a strong spirit of determination and will. From a medical standpoint I would prepare for multiple surgeries throughout your child’s life. 

When adopting from China it is very common that your child will have had at least one lip surgery before you bring her home. Depending on the success of the surgery and the severity of the cleft, your child may need revision surgeries as she gets older. Sometimes the nostril collapses after a lip repair so that will again be something addressed by a plastic surgeon. The soft tissue of the palate can generally be repaired with one surgery. If any fistulas develop post-op your child will need to undergo the palate surgery again. If the cleft goes through the gumline, your child will need to have a bone graft. This typically takes place when your child is school aged. Basically you can anticipate at least two surgeries, but very likely it will be more than that, plus orthodontics. 

If your child has cleft palate, you can anticipate years of speech therapy. I met someone recently while at the Lancaster Cleft Palate Clinic who was adopted at age 3 from China. She is now a lovely 8th grader and this is the first year she has not needed speech therapy. I joked recently that I will gladly endure 12 years of speech therapy since Ruthie potty trained so quickly and easily.

When I have it typed out like this it seems like a lot, but keep in mind all these things are spaced out over the years of their childhood. It is helpful to have a cleft clinic nearby. After surgery, most children will only need to see the cleft specialist once a year. 

At this point, I would say that Ruthie’s cleft lip and palate are not a big deal. Like many children with medical conditions, she is strong and determined. While she may at some point be self-conscious of her scar, we intend to fill her so full of confidence and self-respect that it is not an issue. 

Close up of Ruth’s scar. 

We love our Ruthie! The next post will share more specifically about Ruth’s cleft. 

Anne is Ten!

My firstborn daughter is ten!

Anne has grown from a wild child....

(1-year old Anne at the cabin)

To a calmer 5-year-old...

(Anne at age 5)

To a responsible ten-year old!

(Anne, age 10)

Much has changed in Anne’s ten years. She was an incredibly challenging child from about 1-3 years old. Very ornery, would talk back, always had excuses for her negative behavior, very wild and rambunctious. 

Age four seemed to be her turning point. She gained self-control and a sense of discipline. 

Now, at age ten (while certainly not perfect) she truly is a delight. Anne is very helpful in our big family. She especially enjoys the littlest sisters and helping to care for them. 

Anne is an amazing student. She is self-motivated to get her work done in a timely fashion. 

Things Anne loves:

Horses! (This is one aspect of her life that has never wavered since the time she could talk)

Reading voraciously 

Sewing and cross stitching 

History 

The color blue

Riding bike

Playing softball 

Finding frogs

Catching small rodents in our window wells

Finding slugs

Drawing (horses)

Playing outside

Desserts

Climbing trees

Playing piano

Sunday School with the two best teachers ever (Marty & Janice! She appreciates both of your styles)

Making up games

The comics 

Board games

Reading about horses

Attempting to argue the merits of horse-ownership 

Puns

Most foods but NOT carrots 

Have I mentioned horses?

Every year, Trent takes the birthday girl out for lunch and to do something special.

 As turning ten is a big deal, we wanted this year to be extra special and memorable. 

The thing that made the most sense was to take Anne on her first ever trail ride and first independent riding. 

We found a stable in Maryland (just 45 minutes away) that offers trail rides. 

Needless to say, she was thrilled! (Anne on Whitney, Trent on Skipper, who loves to eat)

They took an hour trail ride, mainly through woods. 

Anne was very comfortable on her horse, Whitney. She has read so many books about horses and knew just what to do. 

(Horse shirt from grandpa and grandma Hess)

She had a wonderful time with her dad. I’m confident it will be a day she holds precious in her memories. Unfortunately this has further fueled her desire to have one of her own. 

Since we are a big family, we do not do birthday parties every year for our kids. We typically have small celebrations with just our kids, sometimes with a special meal including my mom (Mema), and a special meal that Trent’s mom prepares for our Wednesday together. Birthday gifts are generally small (1 book, 1 movie, 1 fun thing).

But on “special years” we go all out. So far those are first birthday, fifth birthday and 10th birthday. 

This year we surprised Anne with a 26” mountain bike. All our bikes have been yard sale or craigslist finds, so a new from the store bike was super special. 

While she certainly can still be silly.....

Riding with no hands!

She is also becoming a sweet young lady. 

While I sometimes wish she would be a little less of a mama hen (as certain younger sisters resent her “helpful instruction” aka “bossiness”), I know that she will one day make a most excellent wife and mother. 

She does take her faith seriously. She has asked a lot about baptism recently and we are attempting to guide her to make a mature decision in the future. Anne is usually quick to forgive and ask forgiveness. She understands there are things about herself that she is working to change. One of the things I love most about Anne is her willingness to attempt to change. It’s not easy for any of us to admit weakness, yet she accepts her failings with humility and grace and makes concerted efforts to change. 

As the oldest, she has to put up with my failings as a mother. Every age she goes through is the first time I’ve parented her particular age. She bears the brunt of my parenting errors and I can only pray it will make her a most compassionate mother herself one day. 

So happy birthday to the first ten-year-old I will raise. We love you, Anne-girl and look forward to your big, cowboy themed party next weekend!