The first month of our Nathan's life has been... a trial to say the least! As some of you may already know Nathan was born with a genetic disorder called Osteogenesis Imperfecta (some people have heard of it as brittle bone disease). Basically, there is a genetic mutation that affects the collagen in his body. While collagen is involved in a number of places in our bodies, the most affected area are his bones, which are extremely brittle and break very easily. OI (as it is called) occurs about 1 in every 20,000 babies born and can vary greatly in severity. We still don't know what the longterm prognosis will be, but are hoping and praying for the best outcome possible. As I mentioned in the last post he was born with a broken arm but that isn't all. Along with the ulnar fracture that was splinted, he was born with a dozen other breaks, including several fractures in both femurs, broken arms, broken ribs and breaks in both clavicles. Since birth, he has had a broken leg, and a broken arm (which ironically enough was actually probably caused by the weight of the splint on the lower part of his arm).
This was of course a big shock, since there was no indication of any problems during the ultrasounds, etc. We only found out about his condition the morning after he was born when the pediatrician came in and told us she was worried that he had short legs, and one of them was actually shorter than the other. It was at that point that we wondered if he had broken his legs because we had realized that he would scream everytime he was moved or jostled.
To add insult to injury, 2 weeks later we noticed that he had swelling in his chest. Our little guy had developed some breast tissue (apparently not terribly uncommon). The doctor reassured us that it was perfectly normal and would go away with time. We thought it was pretty funny, and made a mental note to point this out to any future girlfriends, but otherwise forgot about it. As luck would have it 3 days later we noticed that it was getting bigger and very red so once again we went to the doctor to have it looked at and she said that he had gotten mastitis.Apparently if an infant is in need of antibiotics before 28 days old they prefer to administer them by IV so off to Primary childrens hospital (again) for 2 days to get antibiotics.
Inspite of it all we're doing our best to keep a positive attitude. We feel extremely blessed at the circumstances that have led us to where we are today. Nathan has been accepted to Shriners Hospital SLC. They specialize in orthopedics and are located 20 mins from our house. When we were searching for jobs 2 years ago we were struggling with the decision to come back to Utah but kept feeling that taking this job was the right thing to do, and now we know it was the right thing to do!!!
Nathan is doing great right now, all of his fractures all healed and he hasn't had one in almost 4 weeks. He's a very good baby and is now starting to smile and make cute baby sounds. I'm not sure why he is meant to have this trial but I know like all of God's mysteries, one day we'll know and it will all make sense. I'm so grateful for all the meals and help we have received this last month and I am especially grateful for all the prayers that have been said for Nathan. We know that he has been the subject of hundreds of prayers, and has been put on prayer rolls at temple all over the country. Thank you all so much!
(broken bones might be a big topic in our house right now!)
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