Wednesday, July 18, 2018

Help Give the Gift of Hearing to You

Meet You! You is a little boy that we happened to see in one of the orphanages we work with back in April. We were in the medical ward of the orphanage to look at another baby but You caught our eye. We asked if we could take a closer look at him and what we saw was startling. His face was gaunt, with hollow sunken cheeks, his lips were cracked and dry. Undoing his shirt revealed skin stretched taught over ribs and a concave abdomen. His pelvic bones protruded. His skeletal hands and feet appeared too big for his stick like limbs. He weighed 3 kg (6.5lbs) and he was 6 months old. We suspected that You had Treacher Collins syndrome. But we asked the staff what his medical problems were. They informed us that he was recently discharged from the local hospital, was difficult to feed and they couldn’t get an NG tube to go down. We knew we had to help him quickly before the malnutrition ended his life.

A couple of weeks later You came to Dew Drops Little Flower. We aren’t sure what changed but little You did not have any trouble eating for us! He very quickly began eating large amounts of formula like he knew how much catching up he needed to do. Initially he was gaining about 200 grams per week!

You has been with us for over two months now. He is 9 months old and he has gained just short of 2 kg (4.4 lbs)! He is still very small for his age. Just under 5 kg (11 lbs) and he has a lot more work to do to grow bigger and stronger. But we are so happy to see the progress he has made so far in such a short time! When he first came to us he could barely lift his arms and legs and he had no strength to lift his head at all when he was laying on his belly. He now holds and plays with toys and can lift his head high and steady when prone, he can roll over and is working on strengthening his core to sit up. We can tell by the way You watches everything around him that he is ready to be mobile so he can explore the world!

You recently came to Beijing to have some general health checks and ENT checks done. We found out that he has a cleft palate that will need surgery when he is bigger and older. He also had a hearing test done. You’s ears are deformed and he doesn’t have an opening into his auditory canal. The hearing test showed that because of this he doesn’t hear very well. They recommended a hearing aide for him. While we know how important proper hearing is to allow him to catch up on his development and so that he can be more engaged in the world around him, these hearing aides are expensive (about $3000). We don’t currently have the funds to purchase one for him. Will you help little You by contributing to help him gain the gift of hearing? Little You and everyone who loves him at Little Flower Projects will be so thankful for your help and look forward to seeing what new progress You will make once he can hear better! Thank you for your support!

Wednesday, July 11, 2018

Our Butterfly Baby

There is a group of children referred to as “butterfly children”. It’s not because they look like a butterfly, instead, it is because their skin is as delicate and fragile as butterfly wings. What exactly does this mean?

This group of children are born with a rare genetic disorder characterized by the development of blisters following minimal pressure to the skin. The medical term for this group of skin diseases is epidermolysis bullosa (EB). Blistering can happen when a child is simply held or handled. There is no cure for this inherited disorder but treatment focuses on prevention and treatment of wounds.

On top of this challenging condition, what if a child also is born with a heart defect? We know such a boy and today we would like to share his story. His name is Ping.

In 2018, right after Chinese New Year, Dew Drops received a phone call from an orphanage. They had a little boy who had some kind of skin problem and they needed help taking care of him. After 10 long hours of travel, we were able to bring this sweet boy to Beijing for further medical consultations. The doctors confirmed our suspicion that he had EB and also diagnosed him with a congenital heart defect (VSD). When we went and picked up Ping, we were ready to take care of him. We were ready to treat his wounds, hold him carefully and love him a lot. But now, an unexpected challenge had risen. How can a boy with EB have heart surgery? How can he recover from surgery with ventilators, post-operative monitoring systems and IV’s attached to him? But if we didn’t provide him with this surgery, his heart would continue to decline and eventually would stop…..

We had only one obvious answer to this complicated situation – we had to find a way to provide Ping with life-saving heart surgery while taking care of his skin. And so the preparation started. We started collecting special supplies to be used during the surgery and post-operative care. We also contacted a team of doctors who are experienced in providing care to children with EB and heart defects. And we focused on Ping’s growth so he would get bigger and stronger for surgery.

After 5 months of preparation, the day has finally come. We are headed to the hospital with a suitcase full of supplies, a team of medical doctors and nurses ready to tackle this surgery and concerned supporters all around the world sending this sweet boy many best wishes! Today, we are tackling this challenging situation head on and giving Ping a chance to live.