21 Months Old!

After a super long hiatus, we're back!

James is 21 months old today! He is now crawling on his hands and knees, climbing on everything and into everything. He loves doors (cabinet doors, opening and closing doors, banging on doors, etc.) He is 100% boy!!! He weighs about 22 pounds and is 30" tall. James is the friendliest kid we know...he waves to and says "Hi" and "Bye" to everyone!

Here are some of his latest pictures:

Crashed out after playing in the splash pad.

Hanging out with the "big kids."

Matching T-shirts for the 4th.

Crawling toward the camera!

I love riding on my car!

With the Chick Fil A cow.

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.