I know that I said that I was going to write this blog last Thursday, but to be honest, I was a bit overwhelmed and too emotional to do so. It’s the middle of the night, and I can’t sleep so here I am.
Jia and I went to Children’s Hospital to meet with the Pediatric Endocrinologist on Thursday morning. After charting Jia’s growth, she determined that there is indeed a “fall off” in it. Basically, that means that she started off on an arc that she is no longer maintaining. Best case scenario, she is just really short, but even then, her arc should continue at the same degree. If she continues on the arc she is on now, she would grow to be about 4 foot 9 or 4 foot 10 inches tall. Intervention is an option if that is the case. She can be given growth hormones that will add a couple of inches or so to her height.
At this time, worst case scenario seems to be Turner’s Syndrome. My understanding of Turner’s Syndrome is that an X chromosome is missing or is only partially there, causing a girl to not mature physically. She would not go through puberty, likely would not develop breasts or have menstrual cycles since the ovaries would not produce eggs. Women with Turner’s are unable to get pregnant, although there have been cases of in vitro being successful. The doctor didn’t see any symptoms of this condition except for Jia’s height; however, many girls are not diagnosed until they are trying to have children. She did send us over to the hospital to have her blood drawn to check for this, but it will take 4 - 6 weeks to get the results.
The most likely scenario, at this time, is that she has a growth hormone deficiency. While her wrist x-ray doesn’t seem to indicate bone growth retardation, and her blood work indicated that her growth hormones seemed fine, neither of these tests are reliable for an accurate diagnosis. Instead, Jia will have a test at the hospital in which they will give her an I.V. with a blood-pressure lowering medication (not at dangerous levels) and draw her blood every thirty minutes for 1 1/2 hours (through her I.V.). They will then give her a different medication and repeat the process. In just a couple of days, the doctor will have results of that test. If she is indeed deficient, the doctor will give her growth hormones.
At the end of the morning, Jia was very upset as was her mommy. The blood draw had to be done in her hand, and she cried for a good 20 - 30 minutes afterwards. My heart broke for her, especially knowing that it wasn’t the last “stick.” I’m not looking forward to the hospital visit as we will be there from 8:30 - 2:30, and it will be a painful day for her as well as a long, emotional day. Now that I’ve had a few days to process and pray, my heart still hurts, but I don’t feel as overwhelmed as I did. Please don’t comment that God is in control. I am completely aware of His hand in our lives, but I am also acutely aware of the fact that bad things do happen. I know that we are not alone and that God knows the outcome already. I know that He loves Jia more than I ever could, although that seems unimaginable. I know that He will carry us every step of the way, and I do believe that ultimately, the doctors will be able to help Jia. This situation is not one without solutions.
My pain is that of a mother who desperately wants only the very best for each of her children. I want them to have no worries, no pain, no hardships, etc., etc. I want them to live perfect and happy lives. Even as I type those sentences, though, I know that what I really want is for them to know God in a unique and personal way. I want them to love Him and live for Him. I also know that God has told us in His Word that we absolutely WILL go through trials. How we walk through those trials is the key to truly loving Him and knowing Him in that unique way.
Please pray for my Jia, my beautiful Chinese princess with the most contagious belly laugh ever. Pray that the doctors will have an accurate diagnosis with these tests, and that further testing won’t be needed. Pray, too, that Dr. Travers will have the wisdom to know exactly what needs to be done in her situation and that whatever that is will be successful. Pray also for Jia’s mommy who loves her too much and is keenly aware that her heart is walking around inside of this Chinese princess!!