Some of you may be wondering the same thing and be hesitant to ask, so I thought I’d give a little update. Others of you may not even know that we were worried about James to begin with; so before I give an update, let me give a little background.
About 5 weeks before his due date, my doctor raised some concern about James’ femur measurements on an ultrasound. If you consult Doctor Google, there are all sorts of things that this might indicate. We were sent to the high-risk OB to have further measurements taken, and that is where the roller coaster began. They measured his other long bones and found that they too were measuring well behind his gestational age. The determination after all this measuring was that we were looking at a high likelihood of a skeletal dysplasia, of which there are about 400 different types; and there was no way to know which one he might have. The most common type, however, is achondroplasia – more commonly known as dwarfism.
Over the next few weeks, we went from doctor appointment to doctor appointment, dreading each one a little bit more because the picture seemed to get more and more grim at each one. We heard everything from, ‘it may just be his stature that is affected,’ to ‘he may not have enough room for his heart and lungs,’ to ‘you may have to make decisions about removing support after he’s born’. And all the while, they also continued to tell us, ‘it could be nothing, but all the measurements and ratios we’re seeing point to something’. The term roller coaster may actually be a gross understatement!
Fast forward to his birth, and there were about 20 people in the room including a pediatric team that was prepared to give him an initial once-over and whisk him away to the NICU if necessary. They took him over to the incubator for the pediatric doctor to check him out, and the doctor looked at James and then looked at Andy and said, “now what is it we’re looking for?” So, that was our first sigh of relief. A quick look showed no signs of achondroplasia, and a quick exam showed no need for a NICU stay.
During our stay in the hospital, we saw a geneticist, who also said she saw nothing at first glance that looked to her like achondroplasia; but she did a cheek swab sample to be sent off for genetic testing.
Over his first six months of life, we have gone back and forth with the geneticist’s office, done another cheek swab on James and one on both Andy and me as well. We have gotten a lot of confusing information, because genetics are very confusing. But, we were finally able to meet with the geneticist face to face a couple of weeks ago; and her conclusion was that she saw nothing that would keep James from leading a ‘normal’ life…another HUGE sigh of relief!
So, to answer the question: “Are we still worried about James?” The answer is no, by the grace of God, we are not worried about James, at least not for the same reasons that we were worried about him in the weeks leading up to his birth and in the first months of his life. Now we just have the normal worries that people have about their kids, and we will take those worries any day!
This update got much longer than anticipated, so thank you for caring enough to read it, and thank you for being a part of the loving community that is helping Andy and me to raise our boys by loving and supporting all of us. We are so, so grateful.
Thank the Lord for good news! ❤️
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