A Path to Travel

On July 5, 2012 we got the news we have been waiting 2 1/2 years to hear. There is a reason for Nathaniel's slow growth and probably many of the other things we have been concerned about the past few months.

On July 5, 2012 we got the news we have been waiting 2 1/2 years to hear. There is a reason for Nathaniel's slow growth and probably many of the other things we have been concerned about the past few months. At 6 months of age, Nathaniel started to fall off the growth charts for his weight and by age 8 months he had completely fallen off. It took us until about Thanksgiving of last year (about 1 1/2 years later) to get him back to the 5th percentile for his weight, however by March of this year his height dropped off to the 5th percentile too.

In the past 2 1/2 years Nathaniel has had multiple blood and urine tests, a couple of bone age scans, an endoscopy, a G-tube trial, a growth hormone stimulation test, and many many specialist appointments. Nathaniel's growth hormone test came back indicating that he is deficient in growth hormone and will need to start hormone replacement therapy once we have prior authorization from the insurance company. He also gets very hypoglycemic when he goes more than a couple hours between eating (which happens on most days). After talking with Nathaniel's endocrinologist about the results, I am beginning to think some of his behaviors may be related to being hypoglycemic. Hopefully with the start of hormone replacement therapy, some of our issues with Nathaniel's challenging behaviors will get better. We are also hoping that it will stimulate his appetite a bit making mealtime less of a struggle.

We still have a long road ahead. Nathaniel has a sleep study coming up next week. He will see his gastroenterologist next week also. He has an MRI the following week to check his pituitary gland. At some point soon we will schedule his hormone treatment and we will have an appointment to get trained on that. Once treatment is started we will have very regular blood checks to test his hormone levels. But the good news is that we finally have an answer and we have a direction to follow.

I am glad we really pushed through with all the tests, appointments, etc and stuck with our gut. Over the years my gut was telling me that there was more to this than the unsolved mystery. Then when Andrew was born and ate similar amounts of breastmilk each day as Nathaniel did at those same ages and was maintaining at the 50th percentile. Andrew's 6 month check-up was the clincher. Andrew eats 5-6 ounce bottles during the day, just like Nathaniel did at that age. The big difference is that Andrew sleeps through the night, whereas Nathaniel still woke 2x/night to eat at that age. Knowing what I know now, he was probably getting hypoglycemic and it is no wonder he didn't sleep through the night until 11 months and then had a period of time from age 14-18 months where he didn't sleep through the night most nights either. He continues to have sleep issues and I wonder how often he is just very low in terms of his blood sugar levels. My gut was telling me to keep looking for an answer. So thankful that we have finally gotten one.

Here are some pictures of Nathaniel at 7 months and Andrew at 6 months. I think can really see the difference in their size & definitely tell they are brothers.