New Pictures

Elisabeth loves reading to her brother.
















James started going to the nursery at church. He's getting too squirmy and talkative to stay with us during service and Sunday school. He loves rolling around on the floor, and the workers always tell us how happy he is.
















If you look closely, you can see that James now has two lower teeth!
















Hanging out in the front yard.




















Playing in our bouncy castle.

John Is My Hero

Sometimes when things seem too crazy for me to handle, John comes home and helps me put it all into perspective.

One night, he read to me from John 9.
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."

Last night he told me about an interview with Steven Curtis Chapman he heard on the radio. Maria Sue, his daughter who was killed in a tragic accident a few months ago, drew a picture of a flower and the word "See" the morning of the accident. Only one petal of the flower was colored in, and Steven Curtis Chapman said, "We have six children - only one of them is whole now, we believe, in the arms of Jesus...She was saying, 'See? I'm good. I'm OK.'" John went on to remind me that one day James will be whole again. Oh, how I long for that day. I long for heaven.

Monthly Update Time!

On August 1, James had his nine month appointment. He weighed 15 lb 3 oz, and measured 26 in long. He grew about two inches since his last appointment so the GH is really working!

On the feeding front, we are trying all sorts of new foods. Check out James eating mango! We try to push as much protein as we can, though, at the suggestion of moms of other kids with PWS. He still fights drinking milk, but I've decided I'm okay with feeding him when he's asleep. As long as he's getting enough calories from solids and drinks some water with each meal and snack, I figure he should be okay.

James has had so much fun in therapy lately. One day, he got to play with blue jello. Another day, he finger painted with vanilla yogurt. Last Wednesday, the therapists stripped him down to his diaper and let him splash his arms in a little tub of water. He loved it! Needless to say, we always have to give him a bath after therapy! This coming Wednesday he will be starting outpatient PT in addition to the OT and Speech sessions to work on gross motor skills like sitting, crawling, and standing.

Great News!

We just received some great news from our insurance company. We were very concerned because Humana only authorized 20 sessions of therapy per year for each individual, and James used them up back in May. We had written a letter of appeal to Humana and had not heard back, so we planned to decrease James' therapy frequency from once a week to once every other week. John spoke to someone from Humana on his way home who said that there are two exceptions to the 20 sessions per year rule: 1) traumatic brain injury, and 2) a dependent child with developmental delay. That means James should not get denied and we can continue with weekly therapy. Praise God!

"But I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the LORD, for he has been good to me." Psalm 13:5-6

Galveston

As you can see, we had a great time in Galveston. James spent a lot of time sleeping on the beach (under the canopy, of course). The girls enjoyed digging in the sand and playing in the water. My new favorite picture of James is the one of him lying on his mat on the beach and grinning. He's so cute!

Bathtime, Haircut, and Sitting

James right out of the bathtub. Look at all those rolls on his arms!




















James right before his first haircut. The hairdresser was so nervous about cutting his hair, she dropped the clippers on the floor.




















James right after his first haircut. The hairdresser was impressed with how well he did.
















James poses with Daddy after his haircut.




















Look at me sitting up!

Finally, An Update!

I promise to post a longer update later, but we are still here, and James is doing well. He is prop sitting for short periods of time and rolling all over the place. He loves all kinds of fruit, but he really doesn't care for broccoli and cauliflower. He got his first haircut a few weeks ago, and he looks so much older with his little buzz cut! Last week we rented a beach house in Galveston for a few nights, and James loved the beach. Actually, he loved sleeping on the beach, because every time we took him out there, he fell asleep! It must have been the sounds of the ocean that relaxed him. We will upload all our recent pictures and post them very soon. Stay tuned!

No Tube and Growing!

James saw Dr. Scheimann Thursday. He weighed 14lb 6oz, for a weight gain of 3oz this week! Dr. Scheimann and Norma, our dietitian, said he was doing great. He's getting enough calories from his milk and solids so we can officially say goodbye to the tube. Praise God!

"I waited patiently for the LORD; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the LORD." Psalm 40:1-3

James is still struggling with reflux, though. He still arches his back quite a bit during feedings, so I usually feed him when he's half asleep or completely asleep. Dr. Scheimann added a new medication which will take about five days to work. If his symptoms don't improve after five days, he may need an endoscopy. Please pray that it won't come to that.

Here are some new pictures I recently uploaded:
James went swimming for the first time with John. He seemed to really like it!












James has discovered his toes. He loves to mouth them!

Long Overdue

This post is so long overdue, but things have been really busy this last month.

James has been pulling out his NG tube a lot lately, so we took it out and have been trying to really push him with milk and solids. During the first week without the tube, he lost some weight, but we are happy to report that he gained five ounces last week! He now weighs 14lb 3oz and is about 24in long. He takes about 4-5 4oz bottles a day plus breakfast and dinner. He is our growing boy.

James is also doing well developmentally. He has been really interested in playing with his feet and he can roll clear across the room. He can hold up his head pretty well now and he is working on sitting. We recently tried putting him in the exersaucer and he loves it!

Here are some recent pictures:

Elisabeth decided to dress her little brother up in her Snow White dress.












James takes his first bite of banana during a speech therapy session. That's Bridget, our speech-language pathologist, on the right.
















Family shot at a gathering celebrating Abigail's birthday.

Happy Mother's Day!

We dedicated James to God this morning. We want to raise him up to be a godly young man.
















One of the children's choirs sang a song for Mother's Day that really touched my heart this morning. These were the lyrics:

You knit me together in my mother's womb
You knit me together in my mother's womb
I praise You, I praise You
You knit me together in my mother's womb

Because I am fearfully and wonderfully made
Because I am fearfully and wonderfully made
I praise You, I praise You
Because I am fearfully and wonderfully made


I praise God because He knit James together in my womb and he is fearfully and wonderfully made.

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!

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.

Crying

Yesterday, James didn't drink much milk at his 8am feeding. We were running out of time because we needed to get to church, so I didn't push him. So during worship service, guess who started to cry out loud because he was hungry? That's right - Baby James! I thought it would be just a one time incident, but he continued to cry on and off during the rest of the day when he was hungry. I have never been so excited to hear my baby cry as I have with James. Sometimes I want to just let him cry longer because it's such a sweet sound.

By the way, we asked James' doctor about his "God-highlighted" hair. According to her, it's not something these kids outgrow. So James is stuck with his brown hair with blond highlights. As I've been telling people, some Asians pay a lot of money for hair like his.

"Indeed, the very hairs of your head are all numbered. Don't be afraid; you are worth more than many sparrows." Luke 12:7

Another Answered Prayer

Thank you all for your responses. It was so touching to read your comments and to see how many people are still reading and more importantly, praying.

James had an appointment with the pediatrician today. He weighed 8lb 12.5oz and measured 20.5in long. He has finally outgrown all his preemie clothes and is now wearing newborn and 0-3 month clothing.

One request we mentioned a few weeks ago was for James to get more therapy. Through some contacts, we found out that we can request PT and Speech evaluations from ECI. We did, and they will be sending out therapists in mid-February. Also, our therapists from the hospital are trying to arrange for James to see them on an outpatient basis one to two times a week, and our pediatrician wrote out the prescription for therapy today. We asked God for more therapy for James, and He has answered our prayers! God is so good.

Please continue to pray for James' feedings, which are still taking a long time. A "good" feeding lasts 20 minutes; a "bad" feeding takes an hour. He also has a cold, which has made him a little congested. But the good part about his congestion is that he has shown us how much his upper body strength has improved. He tries to push the bottle away with his hands; several times I've even dropped the bottle because he pushed it away so hard! So even in our difficult times, we have been able to find the good things.

"But God has surely listened and hear my voice in prayer. Praise be to God, who has not rejected my prayer or withheld his love from me!" Psalm 66:19-20

We're still here!

I don't know who is still reading this blog, but here are some updated pictures. Last week we took him to the doctor's office for a weigh-in, and he is now 8lb 7 ounces! He's actually starting to look a little chubby now, and we love that!




Elisabeth continues to love on her little brother. She gives him a hug and a kiss first thing in the morning, and she says, "I love my baby brother!" She also loves to play doctor, especially when Daddy lets her use the real stethoscope. She knows how to listen to hearts and lungs.














Of course, I had to include a picture of Abigail too. She's our happy-go-lucky little girl who loves to eat (just ask her Uncle Tim!) Here she is posing with Uncle Geoff.

Please let me know who's out there reading this blog. Do you want me to keep it up?