Good News, Bad News

First, the good news. James has been on growth hormone for about two weeks now! Our insurance ended up approving it without him having to see a pediatric endocrinologist. We give him one tiny injection every night, and we rotate between his right and left thighs, stomach, and rear end. It doesn't seem to hurt him very much; usually he's asleep when we give it to him. It will take a few months for us to see any change as a result of the growth hormone, but we are just excited that he's getting it. He now weighs 13 lbs 14 oz and is 23 in long! You can see in the previous post just how chunky he's getting.

Now, the bad news. James' feedings haven't gotten much better, even with the changes in medication, formula, and mommy's diet. He had an upper GI series x-ray done last week and it definitely showed reflux. We took him to see a pediatric gastroenterologist today, and she increased his dosage of medications since he weighs more now. She told us to continue what we are doing now (five bottles a day and tube feeding at night) and to continue with solids. In fact, she suggested that he might do better with solids than he does with the bottle. I really think that the reflux is what is causing James' discomfort since he will take the whole bottle if he's half asleep when I feed him. Please pray that the increase in James' meds would improve the reflux and please continue to pray that he would take more milk by mouth. He has had his NG tube for three months now, and we'd love to have it gone!

I'll leave on a positive note with more good news. James is now babbling, saying, "Ma, ma." He's holding his head up much better when he's upright. He can roll himself all the way over from back to stomach and to back again. And he laughs, mostly when Elisabeth talks to him or when I tickle him. I appreciate these little milestones so much. God is good.

Recent Photos

James watching TV.













James tries rice cereal for the first time.













Daddy gives James his first injection of growth hormone.












Family picnic in the front yard.













Mommy's birthday.













Great Grandma Ma.

God is good all the time!

James had an appointment with Dr. Scheimann from Texas Children's Hospital last Thursday. He weighed 12 lb 10 oz!

Dr. Scheimann said he is now ready for growth hormone, but we need to see a pediatric endocrinologist first as our insurance plan requires that growth hormone be prescribed by one. We hope to get an appointment with Dr. Yafi at Memorial Hermann so that James can start growth hormone as soon as possible. Growth hormone not only helps with height but it also increases lean body mass, decreases body fat, and improves motor skill acquisition.

Dr. Scheimann also thought James still had problems with reflux, so she changed some of his medications, changed his formula (which we use to fortify my breastmilk), and asked me to cut out all dairy foods from my diet. I haven't missed the milk too much, but we do eat a lot of cheese at our house. And a friend pointed out to me that I need to cut out all baked goods with butter too! Please pray for my self-discipline. Ah, the things we endure for our children!

We attended a camp last Saturday with other PWS kids and their families. It was great to meet other parents and see other kids and how they are doing. PWS is somewhat of a spectrum syndrome in that some individuals have more symptoms than others. We met some kids who had obvious struggles in certain areas but not others as well as some who looked quite "normal." We feel very thankful for this opportunity to meet others in the same situation.

Please continue to pray for James' feedings. He still has the NG tube until he can take more by bottle. He has been especially fussy this week during feedings since we have changed his reflux medications. On the positive side, he turns six months old this Friday, and we have been given the okay to start solids!

Recent Pictures

Here are our Longhorn kids. Elisabeth refused to wear her outfit that day, but she enjoyed having James in bed with her.







Tube-free for a few hours and proud of myself!
I can lift my head up now!

(Note the industrial size piece of tape holding his tube in place.)

I'm so strong and smart!

James gave me quite a scare today. I put him down under his activity gym so he could play quietly while I pumped. I heard him cooing and playing, and I fell asleep while I was pumping. When I woke up, I went to check on him and he had pulled his NG tube out. I mean, it was completely out on the blanket next to him. Then he smiled at me! It was as if he was saying, "Mommy, you don't know how strong and smart I am! I pulled out the NG tube all by myself!"

I took some pictures of our sweet baby without any tubes or tape on his face this afternoon, but I haven't uploaded them onto the computer yet. And John put the tube back in this evening with lots of kicking and screaming on James' part. Oh well, at least he was free for one afternoon.

Thanks Grandma!

We are so thankful that John's mom stayed with us for a month after James was born then two months after New Year. She was so helpful with cooking, taking care of the girls and taking care of James. We especially enjoyed our date nights while she was here. We'll miss her.

Nebulizer

One of the downsides of having sisters who love to hug and kiss is that baby could get sick, and that is what has happened to James. He caught a cold from them about a week ago, but I didn't worry too much about it. I took him to the doctor today for a well-baby check, and she thought he sounded wheezy. So she has prescribed nebulizer treatments for him for the next two weeks.

On a positive note, he's now 10lb 8oz! He's really growing as a result of the increased feeding via the feeding tube. I'm thankful that he is growing, but I'm also thankful that he stayed small for so long so I could enjoy that little baby phase a little longer than usual.

John's mom is leaving Houston on Saturday, so starting next week, I'll be home with three kids ages three and under. Pray for strength!