Million Dollar Baby

We found out from our insurance company today that we have "maxed out" the number of visits Grant can have with therapists. This is a huge bummer because Grant is making so much progress with the help of his PT and OT. He still crawls funny and doesn't really like to put weight on his right leg, but his leg is getting stronger. I very much depend on the work the therapists do and need their support for his development. We have another special insurance through the state that is supposed to cover whatever our insurance doesn't (Grant is officially a million dollar baby), but I am having a hard time getting them to cover these costs. Please pray that this would be an easy fix and Grant could continue his therapy as early as this weekend.

Surprised by Grant

Grant continues to keep us on our toes. Our latest surprise is that he LOVES the bottle. That's right- after refusing the bottle awake for the past 6 months, he has now decided that he likes it. During the past few months Grant has only had one small bottle while he's sleeping at night. But, the other night when I went in to feed him he was awake and grabbed at the bottle. He sucked it down. It has been over one week now and he's still grabbing for the bottle. It is such a treat to give him a bottle in the morning and evening with him awake and snuggling in my arms.

Grant in costume

Grant's favorite things

A few of Grant's favorite things: books, bellybuttons, sinks, hairdryers, water bottles, banging together balls,cooked carrots, pizza, walks outdoors, music and dancing, wastebaskets, looking in the mirror while saying, "yeah, yeah, yeah.." (no joke)

A great day!

The echo today showed that Grant's heart looked good! There was one small part that they were not able to see, but they don't think it is the source of the problem. We are so thankful that he doesn't have to have another heart surgery! So, we are trying to enjoy the good news and focus on the present. Tomorrow we'll talk to the pulmonolgist and find out what the next step is. Thank you so much for your prayers and love during this trying time. A big thank you goes out to grandma for enduring the long day at the hospital with us.

Keep prayin'

Specific prayer requests for tomorrow:
1. That Grant would receive the perfect dose of sedation (noon)
2. That Grant's echo would show no signs of anything wrong with his heart
3. That Grant would stop coughing (if we can go a week without a cough then they won't have to do the brochoscopy)
4. Peace for mom and dad
Thanks!

A surprise trip to U of M

I talked to Grant's cardiologist today and he is concerned about Grant's latest chest x-rays. Sometimes this can be caused by the veins narrowing. This happens to about 10% of the kids after heart surgery, within the first year. If this was the case, it would require another open heart surgery. We'll be back at U of M on Thursday for more tests. Please pray that Grant would be totally healed.

"Good job!"

Grant has recently begun to tell himself "good job." It is the cutest thing. When he accomplishes something (like putting a shape into the right hole), he stops, claps for himself and says, "good gob!" Well, at least we know that he is not lacking in the praise department if it is his first word after "mama" and "dada."

Grant continues to love music. We brought his music radio to the doctor's on Friday and he danced for all of them. They thought he was a hoot. I thought it was even funnier to watch all of his doctors dance with him. :)

I'm still waiting to hear back from the cardiologist regarding Grant's last chest x-rays.

Jim and Shannon's Big Night Out

This is Guest Blogger, Carmel (aka CeCe to Grant), in the absence of Jim and Shannon, as they are out on the town celebrating their wedding anniversary. For those of you keeping count, that's 6 years of love for Jim and Shannon. Hurrah for them!
Grant and I had a great time together and I would like to record here in blog-permanence that I taught Grant to grab his socks when I said "socks".
Besides that exciting achievement, we read together; systematically emptied out every basket, then refilled them; chased each other around the living room; and smiled the night away.
Grant continues to be the happiest kid anywhere and he soaks up information like a sponge. That's it for me! Shannon will be back for the next installment of Life with Grant.

Lung update

We saw the pulmonolgist today and didn't get very good news. Grant's lungs are the worst they've ever been. Basically the doctor said that when looking at Grant's lung x-rays you would expect to see a very sick child. But, in looking at Grant and listening to his chest Grant appears totally healthy. He is puzzled by it, so he wants more chest x-rays done in 4 weeks. He also said that the chest x-rays show some kind of narrowing of the airways. So, current prayer requests are:

1. That Grant's lungs would be totally healed and his next x-rays would show it.
2. That God would protect Grant from the flu and RSV. (We can't get our first RSV shot until November 1.)
3. That God would give us peace in the midst of this tough news.

Rub-a-dub-dub...

Doing better!

We are thanking God for Grant's quick recovery. He went from having a fever, cough and cold to only coughing 5 times today. He's sleeping well and feeling so much better. Thank you for praying. It made all the difference!

Sick Grant

Yuck- Grant has a cold. He saw the doctor today and so far his lungs sound okay. Please pray for a quick recovery and that it would not turn into anything more serious.

10 months old!

Updated Prayer Requests

Overall, things are great. We have so much to be thankful for. Grant brings joy to every day. It makes all that we've gone through this past year worth it. Although the scariest scenarios are pretty much a thing of the past, there are a few prayer requests we're hoping you'll continue to pray for:
1. That God would heal Grant's lungs. It's flu season again, so until Grant is healed, we have to be super careful of germs. So, as of right now Grant can't be around any kids until end of March.
2. That Grant would not drool so much. This seems like a silly request, but if you've ever met Grant you'll see that he constantly wears a bib. It was brought to my attention recently by the Early On experts as an oral motor issue. (It is more than just teething drool. He soaks through a stack of bibs every day.) It is not a big deal now, but it will be if he's 5 and still drooling.
3. That Grant would learn to use his right leg correctly. Thankfully, his right leg is much stronger than it was just a few weeks ago due to all his therapy. But, old habits die hard and he needs to start using the new tricks he's learned so that he won't walk with a limp.
4. That my ankle would heal quickly. The cast is off and I'm in physical therapy, but I'm still in pain. I can't wait until Grant and I can take a run together one day!

I LOVE TO EAT!

Grant continues to enjoy eating. His favorite is still Mexican food. He's cruising all over the place and can stand up for a few seconds without holding on to anything.I got my cast off this week, so he's happy to have his mommy back in action!

Yipee!

Rhyer's surgery was successful! As you know if you are reading this, the road to recovery is a long one. Please continue to keep Rhyer and his family in your prayers.

Tuesday surgery

Rhyer's surgery has been moved to Tuesday morning at 7am. It should last between 4-6 hours. Rhyer was born with only half a heart, so they will have to "rewire" him to make half his heart do the work of the whole thing. I'll update after I hear from Bill and Courtney.