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!

Double Digits!

James had a weight check last week, and he's now officially 10lb 1.5oz! That means he gained a whole pound over two weeks, so the feeding tube is working. Praise God! I'm also enjoying not having to get up in the middle of the night to feed James. :D

James is also getting therapy through ECI, and we are supplementing that with outpatient therapy. Thank you for your prayers for James in that area.

Please continue to pray for James' oral motor skills and his feedings. I changed his bottle nipples the other day to ones with more holes, and so far that has not made a difference. We need James to drink more efficiently and quickly as well as drink more at each feeding in order for the feeding tube to come out.

I'll post new pictures soon!

Smiling!

James is now smiling at us! Check out his super-cute smile.

We saw Dr. Scheimann at Texas Children's Hospital this past Thursday. She and the dietitian were concerned that he's not gaining enough weight, so they decided to put the NG (nasogastric) feeding tube back in. The plan is to feed him by bottle during the day and by feeding pump at night. I have to admit I was a little disappointed to see the NG tube going back in, but it will allow him to get more calories and thus more strength. The good news in all of this is that I will now be getting a full night's sleep! Yay! I've been praying for more energy for myself, and once again God has heard my prayer.

Would you keep praying that James' oral motor skills and bottle feedings would improve? It was taking up to an hour to feed James two ounces of milk, but now we have been instructed to bottle feed him for only twenty minutes. Whatever he does not finish, we are to feed through the tube. Please pray specifically for James' lip, cheek, and tongue muscles to work properly so that he can suck, swallow, and breathe quickly and efficiently.

Thank you for your prayers and encouragement, faithful readers.