Tuesday, March 28, 2006

Discharge

We are being discharged from the hospital! We are glad to be going home. Caleb no longer has diareah and is very playful.
We will be seeking to move his therapy to the home. This will be better for him and better for Janet.
Caleb spends his time practicing sitting, eating, playing and sleeping. We have an appointment next week with Early Childhood Intervention, an organization that exists to help kids that are behind in their developent. Caleb will undergo a thorough evaluation.
We also emailed The Brooklyn Tabernacle to put Caleb on their prayer list, (http://www.brooklyntabernacle.org/about/prayer.cfm).
Thanks for your prayers.

Sunday, March 26, 2006

Update

Caleb is doing better. He is very happy and playful. He can't play enough! They were talking about sending us home today, but he's kind of had a relapse with diarrhea and he's not eating that well so I suspect we will be there for a couple more days.

Thursday, March 23, 2006

In The Room

They are in a room and doing ok. His diarreah has subsided and seems to be moving toward being "regular". He has an IV and last I spoke with my dear wife, Caleb was sleeping on top of her. Cool.

Hospital Admission

Caleb is being admitted to Miami Children's Hospital due to dehydration. Please keep him and Janet in your prayers.

Meet Caleb's Friend Felipe and Learn About His Heart

Watch Miracle Workers this Monday Night at 10:00pm EST. You'll meet Felipe, a boy that we know who was in the hospital with Caleb and has the same heart condition. You'll also meet Dr. Redmond Burke who performed both of Caleb's surgeries. Lastly, you'll meet our cardiologist, Dr. Mas.

If you've been tracking with us at all through this adventure, you'll really want to watch this. Thanks!

Back to the Tube

When I got home from church last night I picked up Caleb just to spend a little time with him. I was shocked at how light he was. It's been about three weeks now that he hasn't gained any weight. He's had diarrhea for several days and his usual vomiting. So we decided to put the NG tube back in.

The NG tube is a thin plastic tube that goes up his nose, down his throat, and into his stomach. It is taped to his face and then fastened to a feeding pump. This system helps us to continually feed Caleb small amounts over a long period of time, thereby helping him to keep his food down. Since he's been dehydrated, this really is our only option, other then taking him to the hospital to get an IV.

It has been a few months since Caleb has had a tube like this. Less then five minutes after we were able to secure the tube, I'm talking it was already taped to his face, he yanked it off - tape and all - when we weren't looking.

Well, if it wasn't heart wrenching enough to put that tube in him, we had to do it again - this time with more supervision until he finally fell asleep.

Sometimes it feels like we're going backwards....

Wednesday, March 22, 2006

Developmental Problems

We know that with every problem comes a possibility. God is faithful.

We do want you to please pray for Caleb's continued development. Today, his speech therapist told us that something is wrong with how is developing. He is not pushing his food to the back of his mouth with his tongue like he should. Please pray for his growth in this area and his overall strength. Ask God to heal him. Thank you so much.

Monday, March 20, 2006

Latest News: A Hospital Stay, A Progress Report and More...

Yes, chalk up one more hospital stay for our little fighter. Last Wednesday, on my way home from church Janet told me that she was taking Caleb to the ER at the suggestion of our doctor because he had been crying constantly and had appeared somewhat lethargic. We wanted to make sure he did not have meningitis. After running some tests and evaluations, to our shock they wanted to admit him. At first, we tried to convince them to let us go home and we would follow up with the doctor; however we decided to stay. We were placed in a room around 5:00am Thursday morning, approximately 6 1/2 hours after arriving at the ER.

While the ER is far from feeling like home, we are somewhat more comfortable there then most people. (That's pretty weird.) We have been able to build some relationships with the nurses there. One goes to Calvary Chapel Ft. Lauderdale. Others have treated Caleb before and they know him well. This was the case with the nurse we had Wednesday night. We were able to talk to him, find out a little bit more about his life, his career, his past, et cetera. Then, after he had walked us to our room, I thanked him for all his help, gave him one of my cards, and told him to let me know if he ever needs any spiritual help or needs a church to please let me know. The next words that came out of his mouth floored me. It was something like, "My life is really falling apart." We were able to minister to him a little bit and hopefully we'll see him at church.

That's how this thing with Caleb always goes. It drives us nuts to have to see him in pain, constantly throwing up, getting stuck with IV needles, taking so many medicines. But then there's always that moment of ministry that never would have happened without a hospital visit.

Please pray for Caleb. We came home Thursday. But while at the hospital we think he might have contracted another virus. He now has diarrhea, and seems to be vomiting everything he eats. Talk about laundry!

Today he's supposed to have a lung profusion test, as he is eight weeks post-op from his Glenn surgery. We have a couple concerns about the test because we have a friend who took the test, was mis-diagnosed based on the test results and had a cath procedure that was completely unnecessary!

Please pray that the Lord would strengthen his muscles. He still seems to be floppy, is not able to sit up on his own, and needs more therapy. Granted, he's been through a lot, but we are hoping for more progress.

Miracle Worker: as posted previously, ABC is airing a program called the Miracle Workers. Our little friend, Felipe, will be featured a week from today. Please watch it if you are interested in some of the steps that we have been through. Felipe's heart condition is very, very similar to Caleb's. You will see some of Caleb's doctors including Dr. Mas, the cardiologist, and Dr. Burke, his surgeon.

Monday, March 13, 2006

Miracle Workers


Tonight at 10:00pm on ABC is the new show Miracle Workers. One of the hosts and members of the medical team on the show, is Dr. Redmond Burke (second from the left), who performed both of Caleb's surgeries. We love and respect Dr. Burke.

Shortly after we moved back to Miami, our cardiologist, Dr. Mas, told us about the filming of this program for ABC and wanted to know if the producers could call us because they thought our situation would be perfect for the show. For awhile, we thought it would happen, but the timing never worked out.

We do know a little boy Felipe, who was in the hospital shortly after Caleb, who's surgery will be featured in an upcoming episode. He had the Fontan operation. This is the same operation that Caleb will need to have in a few years. During the program you can meet Dr. Mas, Caleb's cardiologist, as well as, I'm sure, other members of the surgical team.

We'll be watching.

For more info about this program, click here.

Now for an update:
Caleb has been a bit sick, running a fever, lost his voice, very fussy. We think it's no cause for alarm, just a cold, etc. He still is vomitting a bit, but has started to eat baby food. He goes daily to the chiropracter, as this, we believe, will help his reflux. Seems to be working...
He teaches us patience and endurance. He's fun to play with. He needs more therapy, as he evidently has an eating/feeding disorder. He's not sitting by himself, yet, but getting closer every day.

Thanks for all your prayers.