Waiting for You: Tommy

February 28, 2017 0 Comments

Tommy is a precious three year old boy who waits for a family of his own. He is currently listed with GWCA.

Tommy’s primary special is transfusion dependent thalassemia. He also has some cardiac issues which may or may not be related to the thalassemia. He currently receives blood tranfusions every one to two months. He is described as having good mobility and excellent fine motor skills. He can follow instructions given to him by a caregiver, for example throwing away a piece of trash.

Like many children his age, Tommy prefers not to share his toys with other children. He enjoys building towers with blocks when he is playing and he really likes playing ball games. Tommy is speaking simple words and phrases. He knows what the different parts of his face are and he will point to them when his caretaker asks him to identify his nose, eyes, mouth, ears, etc. Tommy knows how to put his shoes on by himself. He gets upset when he doesn’t get enough cuddles from his caretakers. When Tommy goes to sleep at night he usually sucks on his fingers.

Please contact the GWCA advocate for more information on Tommy or to pursue his adoption.

Wisdom for Enduring Extended Hospital Stays

February 27, 2017 0 Comments

When we arrived home with our youngest daughter and fourth CHD child, Rini, in August of 2013, my definition of a long hospital stay was three weeks. When my husband dropped us off at the entrance of the children’s hospital’s Emergency Department straight from the airport, little did I know that my definition of an extended hospital stay was about to change drastically.

Rini’s initial hospitalization turned into six months – with the first six weeks at a hospital one hour from home and the remainder at a hospital four hours from home. With five other children ages 13, 7, 5, 4, and 3, it was a taxing season in our lives.

There’s so much I learned during those months, but the following are points I would like to share for families who find themselves on the seemingly endless treadmill of an extended hospitalization with their child.

Make your child visible.

I’ll never forget my first morning in the Cardiac ICU at Seattle Children’s Hospital. We had been transported via Life Flight Northwest the night before from our local children’s hospital, where our daughter had been the only child in its Pediatric ICU with complex, let alone end-stage, cardiac disease. Now we were in a large CICU… a sea of CHD and Cardiomyopathy. Rini was just one of many intensely sick children at one of the largest pediatric heart failure/transplant programs in the country.

It dawned on me quickly that I needed to make sure that every medical professional in that unit knew her as an individual, not simply the end stage single ventricle in room 204.

So I spent the next 48 hours decorating the sliding glass door to her room with the photographs of her that I had brought with me, artwork from her siblings, cards sent to her by family and friends, her “This Is Me” poster from her previous hospital, and a large family photograph which I positioned directly above the slot on the wall outside of her room where her paperwork was kept. I didn’t want anyone walking by her room without knowing that there was a much loved human being residing just a few feet on the other side of the door.

Nurture relationships with your child’s medical team.

Making Rini visible greatly contributed to my ability to do this. The photographs of her and our family were conversation starters. Soon, physicians who were not even a part of her direct team were coming by to talk and learn about her. One such person was a general cardiologist who was intrigued by her story and stopped by every so often with questions about the status of CHD children in China. Long story short, he came on board with Little Hearts Medical and is now one of our most prolific file reviewers. He is also the cardiologist in charge of our non-transplant CHD children when they have interventions at the hospital.

We also built a friendship with Rini’s transplant cardiologist, who was born in a province neighboring hers in China. They share a beautiful bond. Those are but two examples of the fruit born of the many friendships established during those long, often heartbreaking, and yet miraculous months.

Rini and her transplant cardiologist, Dr. Yuk Law, at her transplant clinic visit last week

Rini has a team of caretakers there who know and love her and embrace our family, which has resulted in a holistic experience and has increased our confidence in the entirety of her care.

Treat your child’s medical team with respect. Practice grace.

During times of great stress, it can be tempting to lash out. While sounding an alarm in order to get your child what he/she needs in the medical setting is sometimes necessary, we all have the choice to do so with poise or without. In my experience, better results are yielded with honey than with vinegar. You can be a fierce advocate without resorting to hurling insults and demeaning others. And you will be a better advocate by restraining yourself from behaving in such a way, as very few people will feel compelled to go the extra mile for people that are abusive to them.

Remember that medicine is often as much of an art as a science, and that difficult recoveries and poor outcomes happen at even the most experienced and highly ranked of hospitals. Work with your child’s doctors and nurses, not against them.

Practice random acts of kindness.

There is no better pick-me-up than doing something kind for other parents and children who are suffering along with you and yours. Leaving a can of Diet Coke outside of the room of the child down the hall whose mother I knew was craving it; slipping some cash into an envelope for a meal for a family who was struggling financially; taking the sibling of the little boy on life support in the room next door to the playroom to give his mother a respite…all of these acts ultimately fed my soul and allowed me to pull myself inside out. Providing balance for your spirit during the darkest of times is vital.

Reach out to other parents in the hospital.

I was mentored by two women whose children had spent almost a year in the hospital; one waiting for transplant and the other in a vicious post-transplant recovery. What I learned from them, both spiritually and pragmatically, was priceless. As the weeks and months passed, all we needed to do was look at each other to know what to say, or when to remain silent.

Sharing our cumulative wisdom with the families who would appear in the unit, some shell-shocked as they had just been thrust into the world of CHD, was like balm to my soul. I found that supporting others was soothing, empowering, and ultimately healing.

Take care of your physical self.

A daily trek outdoors for exercise and above all, providing yourself with good nutrition, is essential for body and mind. It is very easy to fall into the habit of endless candy eating and sugar-loaded lattes in the hospital setting when under tremendous stress (I am guilty as charged). And while there is a place for treating yourself, treating yourself right should take priority.

Ask for help.

Whether reaching out to other adoptive parents, hospital social workers, or mental health professionals, be sure to create a network of care around yourself even if you don’t feel that you need it right in that moment.

Also, be sure to notify your other children’s pediatricians and teachers of the stress your family is under. They may have resources for you to take advantage of to assist everyone in your family when times are challenging.

Remember to cry.

I failed miserably at this. In my attempt to keep myself together, I neglected to acknowledge my grief.

It took me a long time to understand that my gratitude for the blessings of each day could coexist with the pain and grief of my child’s very uncertain tomorrow.

Now, three years out from Rini’s transplant, I am finally able to cry all the tears I wouldn’t permit myself to while in the thick of the trauma. I had forgotten that tears can be another voice with which to pray.

Hear, O Lord, when I cry with my voice, and be gracious to me and answer me. – Psalm 27:7


Urgent Aging Out Child: YouYou

February 26, 2017 0 Comments

YouYou is 13 years old and has a year left until he ages out from the adoption program. His file reveals that he was found around his 3rd birthday. With testing, it was determined that he has Thalassemia. He receives transfusions every 1-2 months.

YouYou is a curious and attentive boy. He is very interactive and engaged in all activities. He seems to be very sweet and empathetic. He is eager to play and even seems to like some competition when playing sports. YouYou is eager to play with other children. He is also a little bit ticklish! He has a great sense of humor and is very smiley. YouYou loves to draw and paint and play sports, especially football. He also enjoys reading books. He states that his favorite food is noodles with vegetables and cabbage. His favorite color is sky blue. He is afraid of the dark. YouYou can tie his shoes and easily fasten zippers and buttons. He is totally independent with all self-care skills- he even makes his own bed! He lives in the orphanage. YouYou can do basic math, including addition, subtraction, multiplication, and division. He can repeat a pattern of 8 colored shapes from memory, after seeing the pattern. YouYou is in 7th grade. His grades are 90+ but his best subject is math. Staff report his overall development on par with other children his age.

YouYou is initially shy, but becomes very talkative as he warms up. He answers all questions with long sentences with substantial content. YouYou can speak Mandarin and also the local dialect. He reads and writes. Even his teacher reports that he is ‘chatty.’ YouYou has great balance. He can sand on a balance board for several minutes adjusting his stance to maintain his balance. He can stand 5 seconds on his right leg and 10 seconds on his left. He enjoys ball and can throw and catch the ball across a room. He can do 3 jumping jacks with good form and easily skips and walks.

YouYou is listed with Gladney as part of the former shared list kids program. His file is eligible to be transferred to any agency with a qualified family ready to submit a letter of intent. YouYou needs to find a family or he will most certainly pass away at a very young age. In the United States, he would be transfused at least every two to three weeks, possibly even more often the first 1-3 months home to help regulate him. There are agencies which would offer a grant for YouYou’s adoption, such as Madison Adoption Associates ($3,000 agency grant), WACAP ($4,000 promise child grant to an eligible family), and possibly others. YouYou has about 11 months left to find a family and for them to get to China in time.

Interested families may contact April Uduhiri or Brooke H for more information. We cannot let this sweet boy age out- he could have a much longer and happier life in a family and he deserves that!

Strength for the Journey: Adopting a Child with Complex Heart Defects

February 26, 2017 0 Comments

I was just able to sit down with a cup of hot tea on a cold and lazy Saturday afternoon, relishing in the quiet and calm. Also know as, daddy is home so he is dodging toddlers and taking care of farm animals while I hide in his office to write this article. With six …Read More

Medical Crisis: Being Your Child’s Best Advocate

February 25, 2017 2 Comments

In the summer of 2016 we adopted our precious Sonnet. Her adoption was medically expedited due to her being profoundly malnourished. She was also diagnosed with cerebral palsy and overall global and cognitive delays. What we didn’t know about was the seizures. She was experiencing them the day we took custody of her, but the …Read More

Waiting Child Highlight: Evan

February 24, 2017 0 Comments

This cutie is Evan. Evan was estimated to be 4 years old when he was abandoned. He is now believed to be six, soon to turn seven. His abandonment was likely due to the high cost of blood transfusions, which he needs to treat his medical condition of Thalassemia. We are guessing that his family …Read More

Homeschooling Your Adopted Child: 8 Steps to Get Started

February 22, 2017 0 Comments

“There is no school equal to a decent home and no teacher equal to a virtuous parent.” ~ Gandhi home·school·ing ˈhōmˌsko͞oling/ (noun): the education of children at home by their parents. The definition of homeschooling is fairly straightforward, but families who choose homeschooling as the best option for their adopted or special needs children can …Read More

Reluctant Spouses: His Perfect Timing

February 21, 2017 2 Comments

I was ready to adopt long before my husband was. More than ten years longer. It all started when I watched a documentary about the orphans and orphanages in China. My heart broke and I immediately felt compelled to adopt a little girl from China. My husband did not feel the same. I honestly could …Read More

Meant for This: Parenting Children with Complex Heart Defects

February 20, 2017 0 Comments

I want to start by saying that our miracle children astound me. We love them personally and uniquely. Their birthparents are revered in our home; we thank God they had the courage, strength, and compassion to have them and keep them safe. I married my college sweetheart. Kyle is way more incredible than me; I …Read More

Choosing Happiness Daily: Adopting a Child with an Unfixable Heart

February 19, 2017 2 Comments

One evening less than two months after bringing home our second son from China, I told my husband that I wished we could adopt an older child someday too. In both of our travel groups, there were older children who were adopted. These had made such an impact on my heart! They understood the idea …Read More

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