Thursday, March 10, 2016

Why Little Man J is Little

Yes. I am well aware my blog basically died over these past several months. So much has happened that I can't even begin to catch up on. So I'll start with one of the big things.

If you follow me on Instagram, you've noticed all pictures of Joshua have the hashtag-#littlemanJ. I started using it when he was first born. I didn't know at the time however how real that little nickname would be.

Joshua was born 6 pounds, 6 ounces and 19 inches long, at 39 weeks. He was in the 10% for height and weight and remained right on his growth curve for the first two months.

When we went in for his 4 month check up, we found out he had completely dropped off the growth chart in height and weight! At the time, we didn't really know what was going on. I added back in more feedings to see if it made a difference. It didn't. For a few months we tried everything to get him to gain weight-I nursed him more often, offered a bottle after he nursed, pumped after each feeding, gave him solids.....and none of it made a difference. From birth, Joshua has always had a small appetite. He never nursed more than a few minutes on each side, and I could never get him to take more milk, even from a bottle.

We saw a specialist in Hong Kong, and a few other doctors. Everyone agreed that he was just small. Daniel is 5'6, and I'm 5 feet, so the general consensus was that he was just little like his mom and dad.

I remember one day crying because nothing we were doing was working. I told Daniel, in my gut, I knew it wasn't a nutritional or food issue. I couldn't explain it, but I just knew that wasn't it.

Joshua weighed about 12-13 pounds and was 24 inches long for several months. He was severely falling off the growth chart. People were always asking how old he was, and shocked when we told them. He always looks so much younger and smaller than his actual age.

We had routine blood work done when he was 9 months old. Everything came back normal.

We had a family vacation planned in mid-December, to go to the States. It was the perfect time to see a pediatrician and find out what was going on. He was 10 months when we flew to the States.

The day after we arrived in Oklahoma, we saw an amazing pediatrician!! She was pretty shocked at his lack of growth, and ordered several tests. They needed so much blood for the tests, we had to go in several days in a row because they couldn't take that much blood out of him at one time. He also had a check x-ray and bone age scan.

Joshua's bone scan showed that his bones were 4.5 months. So at the time of the test he was 10 months old, but his body (bone age) was only 4.5 months!

We found out about a week later that his IGF (growth hormone) levels were low and we were referred to a pediatric endocrinologist at OU Children's. Which BTW-can not say enough about how much we loved every single doctor and nurse at OU Children's. I cried at the end of every appointment. I am SO grateful that we were able to have Joshua's tests and diagnosis done in english and by extremely knowledgeable and kind doctors.

Joshua had an MRI of his brain and a 6 hour test that they drew his blood every 30 minutes. This test was to confirm he had growth hormone deficiency. Joshua was amazing and barely even cried! He had to fast for over 12 hours and that was the hardest part. He was pretty tired after all of it.

The test confirmed his body does not make enough growth hormone-which explains why he was so little!

So, now he gets a daily injection of growth hormone. We give him a shot every night, and he doesn't even cry. It's a small needle and he does really well with it. He will need to have a daily injection until about puberty, so for about the next 15 years.

Joshua is growing. He has gained about 1 pound and over 1 inch in the last month, since we've started the injections. I know that doesn't seem like very much, but we can tell a big difference. He hasn't really grown much in several months, so any growth is pretty noticeable.

I didn't do a one year post for him yet, but here are his stats of right now:

Height: 68 cm, about 26 inches
Weight: 7.3 kg, about 16 pounds
Size Clothes: 9 months

Developmentally, Joshua is right on track. He isn't walking yet, but he is really close. Because his bone age is so far behind right now, he doesn't have the full muscle mass that both children his age have. But despite being so small, he has done almost everything right on schedule.

He's still not on the growth chart yet, but I'm hoping that within the year he will be. Grow baby grow!

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