allergy testing

Grant got allergy tested today to make sure that food allergies are not what is causing him to not want to eat. After 20 pin pricks and three shots we were thankful to find out that he's not allergic to any foods that they could detect. Grant was not a fan of the test, but he took the best nap of his life afterwards. :)

Grant's feeding update

Today Jim and I met with Grant's GI doctor. He was extremely helpful. He confirmed what we already knew- that Grant is not eating enough so he is not gaining weight like he needs to be. He does not yet know the cause but said it is time to be aggressive in finding out more data. So, here is a summary of his plan:

1. Get the results of Grant's echo at U of M next week. (He said that if Grant is still having heart/lung issues, then that could be the cause of not wanting to eat. Can you imagine trying to eat while not being able to get enough air?)

2. If the results come back saying Grant's heart and lungs are fine, then he'll do a PH probe. This is a tube down Grant's nose into this belly for 24 hours that measures how much acid reflux Grant is still experiencing. If Grant is refluxing a lot, then this pain could be what is causing him to not want to eat.

3. If the PH probe comes back fine and Grant is still not eating then we'll head to Columbus, Ohio to one of the best "feeding disorder" clinics in the country. It is inpatient, so Grant would be checked in for 2 weeks while they work with him and us on "retraining" Grant to eat. This clinic has a very high success rate and would be well worth the 2 weeks if we got to bring home a child that liked to eat!

4. If Grant does not learn to eat at the clinic and is still not gaining weight, then they would consider putting a g-tube into Grant so we could feed him directly into his stomach.

Please continue to pray for Grant to be healed and for Jim and I to not grow weary.

Memorial Day Pictures

kisses from dad

Sucking on my pacifier

on my way to bed...

Do I look sleepy to you?

Grant and food

Grant continues to only drink his bottle while sleeping. As we learn more about this oral aversion we found out that this is called "dream feeding." The problem with this is that the sucking reflex that babies do in their sleep stops at around 7 months.

We are trying to come up with a contingency plan for if Grant stops "dream feeding." I had a taste of this tonight and finally gave up after trying for two hours to get him to eat. Every time the formula hit his throat he woke up agitated. It is so frustrating to spend so much of our day/night to try to get him to do something that is so basic.

The good news is that Grant likes solid food. The bad news is that he can't take in nearly enough to cover his caloric needs. The worse news is that even if he ate enough solids, without taking the bottle he won't get enough water to stay hydrated. (We are still working on the sippy cup.)

So, we are going to try to get our occupational therapist, GI doctor and cardiologist to agree on what to do when this happens. Our fear is that they are going to want to put in a G-tube (where food goes right to his stomach) because they really need him to get enough calories. Please pray that it doesn't get to this point. We would love to see Grant's feeding problems healed before we get to a crisis point. Plus, we're feeling weary and tired of battling him over every meal. We could use your prayers for strength and perseverance.

On the mend

I'm starting to feel better and been having fun taking pictures of Grant while hanging around the house. Today I decided to give him a bath outside. The pictures say it all...

Fun Grant Picts

Still sick

Today my brother asked me, "Shannon, why haven't you updated the blog? You can't just leave people hanging like that." I told him that nothing is new because I'm still sick so I'm hanging around my house in latex gloves and a surgical mask. But, he convinced me to post this so that everyone would know that Grant is fine. Neither Grant nor Jim has caught my bug and we're still waiting to hear from U of M on the date of his next echo. That's all.

I'm sick!

It seems that in the midst of the stress of the last couple of days my immune system has taken a hit. I've got some sort of upper respitory infection and feel quite terrible. My parents have Grant for the afternoon until Jim can get home from work. Please pray:

1. That Grant does not catch this virus! If it gets in his lungs he could easily wind up in the hospital.
2. That I recover quickly.
3. That Jim remains healthy and strong as he cares for Grant and me.

A visit to U of M

Last night Grant seemed to be "panting" (like a dog) and kind of gasping for air. So, today I took him to Ann Arbor to see his cardiologist. He wasn't too concerned about the panting- he thinks it is a behavioral thing Grant learned to do when he's excited or upset- but he is concerned about how hard Grant is breathing overall. He continues to retract (suck in so hard that you can see his ribs), which should have gone away 6 weeks after surgery. So, it is either his lungs or a problem with the veins from surgery restricting. He doesn't think it is an emergency, but he wants us to come back for a sedated echo in the next couple weeks to check on these two issues. Please pray that by the time we go back Grant is no longer retracting!

Grant at the doctor's office

Update on Grant's leg

Good News! We just got back from Children's Hospital, where Grant had an ultrasound of his hip and an examination of his foot and shin. The conclusion was that it is something he'll grow out of. They said he might be pigeon toed when he first starts walking, but if he's not better in a year to bring him back. So, less doctor to go back and see. Yipee!

Grant once again played the "rip up the paper" game at the office and grandma was there to witness the fun. Stay tuned for some pictures of the excitement.

Grant enjoying his truck book

Grant eats again!

Thanks so much for praying for Grant to eat. Soon after I posted the prayer request he started to eat asleep again. He still refused solids, but then started eating them again today. Still no awake bottle yet today.

We went to the GI doctor for a check up today and Grant was entertainment for the whole office. While we were waiting for the doctor he was aggressively tearing up the paper cover on the doctor's table and then laughing whenever it would rip. Big, belly laughs. One doctor saw him, and she told another doctor and then the nurses all piled in the room and everyone was cracking up at Grant. When he was done shredding the paper he wanted to stand up (supported under the arms by me) and jump. And jump and jump and jump. The more people laughed, the more he jumped. They said they have never seen such a happy (and active!) baby. They said he must really tire himself out and sleep a lot. Ha! He's a unique kid. Never tires.

After all the jumping Grant turned toward me and puked all over my pants. The doctor said, "I guess he still has acid reflux," and increased his medication dose. He was also concerned about the growing eczema on Grant's body. (It covers about 80% of him now.) So, he's sending us to an allergist to see if he's allergic to milk. We have that appointment on May 31. But, the good news is that Grant is now in the 45% in weight!!! He's finally gaining at a good pace. The doctor said Grant made his day.

Battle of the bottle...again

We could really use your prayers in regards to Grant's eating again. Starting yesteday he decided he didn't want to eat while sleeping anymore. Everytime we tried to slip the bottle in he woke up and started screaming. So, we thought, okay, maybe we'll move to all awake feedings. But, he's still not eating enough awake (only about 15% of his daily calories) to keep him out of the hospital. So, right now, he's really short on food and we're puzzled as to what to do. Please pray that Grant would start eating again- awake or asleep!

Grant's bottle update

I think we've had a breakthrough! Grant is now taking about half a bottle awake every morning. It seems that Grant prefers to do this only when Jim is in the room and talking to him. So, in the morning we follow Jim around the house as he gets ready for work and Grant watches him and sucks the bottle. When Jim leaves for work, Grant stops sucking. Weird! But, we're making progress. I think the oral aversion is going away now that he is eating solids. Please pray that he continues to improve on the bottle. We're also trying out the sippy cup this week!

Grant and Mom's cast