Caylie's Diagnosis - Turner Syndrome

* Caylie (Fu Jiu Chang) at 3-years-old. Fuzhou, Jiangxi, 2012 *

We always knew Caylie JiuChang was small.  Her adoption file, made in China when she was three years old, says that she had global delays and "small stature".  It's difficult to tell in photos or even videos just how small a child is.  But when she was brought to us in Nanchang, China, on May 19, 2013, I couldn't believe just how small she was!  I kept saying, "How could she be four years old??!"  We were traveling with a family who was adopting two children who were less than two years old, and Caylie was the same size as they were.  I did notice that her hands, and especially her feet, were very chubby and puffy, and it was hard for her to put on certain kinds of shoes.

* Caylie with her little friends in Guangzhou, May 2013 *

When we got home from China we took Caylie to our family doctor for a physical.  He agreed that she was very small - she was far from even being on the growth charts - and he noticed her puffy feet, but he didn't seem concerned about any of it.   I think we all just assumed she would have a growth spurt over the first months home, as many children do.  But she didn't.  We saw other doctors over the next four years, as our insurance changed from time to time, but none of them seemed to have concern about her lack of growth.  They'd just say, "Oh, she's just small."  Or chalk it up to her being Asian.  Well, it turned out that she wasn't even close to being on the Chinese growth charts, either.

* Caylie and her friend LiLi - from the same orphanage -  both 5-years-old, 2014. *

Over the past couple of years, as Caylie became 6 and 7 and then 8, her tiny-ness began to become more of an issue.  No one believes her when she tells them her age, especially now that she's nine!  Children assume she's making it up, and even adults will look to me for the "real" answer.  It makes her sad and frustrated.  She is smaller than most kids who are younger than she is.  She can't do things that most kids her age can do.  She can't get a snack or lunch out of the refrigerator unless it is on the bottom couple of shelves.  She can't microwave anything for herself or even get a gallon of milk for her cereal unless it is mostly empty.  She can't put things away from the dishwasher or put laundry in the washing machine.  She can't reach things on the kitchen or bathroom counters unless she drags a stool with her.  People treat her like a small child all the time, picking her up like a toddler.  They wouldn't do that to an average-sized eight or nine year old!

* Caylie and a school friend on the first day of school, 2017.  This other girl is a year younger. *

* Caylie is far from being on the growth charts.   The line below the curve is her growth from June 2013 to July 2017. *

So, this last summer, after not being taken seriously for over four years, I found a new pediatrician.  This one took Caylie's lack of growth seriously and sent us to a pediatric endocrinologist.  The endocrinologist also took it seriously, and ordered a large panel of blood work.  It didn't take long to receive a call from the doctor, telling me that Caylie has Turner Syndrome (45,x) which is a chromosome deletion, affecting only girls.

I knew nothing about Turner Syndrome, and after googling, I found that there are several physical markers that some girls have and some don't.  Caylie has the puffy hands and feet and the short stature, but that's about it.  We had to see a cardiologist for an echocardiogram, as many girls with TS have abnormalities of the heart.  We are grateful to God that Caylie's heart is perfectly fine.  We also saw a urologist and had a renal ultrasound done, as many girls with TS have abnormalities of the kidneys.  It turns out that she does have this, but the doctor is not concerned at this point, since she has not had any problems.

Girls with Turner Syndrome can have extremely small stature, as you can see from the photos.  We started nightly Human Growth Hormone injections in October, and are hoping that they will help her to grow at least a little taller than she would otherwise.  She will continue this regimen for several years, until she stops growing as a teenager.  Without the HGH, she would likely reach a height of only around four feet.  We're hoping for closer to five!  She is a trooper with the shots.  (I can't even imagine having had a shot every day at her age!)  She keeps track of the area of the body where the shot goes, and writes in in our log book.  She wipes off the area with an alcohol pad, and then counts after I put the needle in.  Then she throws away all the trash.  It helps her to take some ownership in the process, so it's not just something being done to her.  She's doing great with it, and we are so proud of her.

* Our HGH paraphernalia *

When Caylie becomes a pre-teen, she will start estrogen therapy.  Girls with TS do not enter puberty and are unable to become pregnant.  This, along with the height issue, is obviously the biggest factor.  I decided right away, that, like the word "adoption", I never want her to remember a time that she didn't know about this.  I want it always to be something we talk about out in the open, and not a huge awful surprise as a teenager or young adult.  She found out when she was eight that she would not be able to have babies in her tummy.  It was sad for her, because she has watched her big sister Brittany be pregnant with her babies and bring them home from the hospital.  But I told her that God made her just the way she is, and God doesn't make mistakes.  I told her that God makes families in all kinds of ways.  Some families only have babies from the mommy's tummy.  She knows families like that.  Some families, like ours, have babies from the mommy's tummy AND from adoption.  Some families ONLY have babies and kids from adoption.  She knows several like that, too!  I told her that God's plan for her was to have babies by adoption, and that it was so cool, because she already knows all about that!  And that she could adopt babies from China, because she is Chinese, and she knows all about THAT!  AND that it would be so cool if she did that, because she speaks Chinese!!  What a cool plan God has!  💗  He is always good, and He loves our Caylie so much!