Thursday, April 24, 2008

Two New Friends

We've got two new Gus' Gang friends to welcome!

First is a little fellow named Caleb. Right now he is hanging out at St. Judes in Memphis, TN because he is undergoing treatment for a rare cancer called ATRT. I hope to soon get permission from his family to post a photo and his carepage address. Caleb's parents live in Greeneville and take turns staying with Caleb in Memphis. Road trips are common in situations like this so we all need to be praying not only for Caleb's healing, but also for travel safety for this family.

Next, I'd like to tell you all about a gal named Cassidy. She is a nine year old girl who my parents have recently met...her uncle owns a restaurant that my parents eat at and she sometimes helps her uncle serve the food. Both of my parents have mentioned that she is just a jewel! Well, last week, she was diagnosed with Stage 4 cancer. We are still trying to find out what type of cancer and I'll let you all know when I do. She has already had her first treatment and became very, very sick. I hope that each of you will pray for this gal and her family. I hope to find out when her next treatment is so that we can just bathe her in prayer at that specific time. As with Caleb, I hope to get a photo soon.

So there you go....please don't delay in adding Caleb and Cassidy to your Prayer Lists!

Thursday, April 17, 2008

Top Droppers

Thanks to all these fine Entrecard folks who have been consistently coming by for a visit! These are the top seven droppers.

Easy Share ---Connie's going to be seeing Gregory H. Johnson (Major, USAF) soon! ---tons of techy stuff here, folks!
Cheaper by the Half Dozen ---read a neat story about her son
The Sewing Mom ---read about a IRL meet-up!
Old Bitty ---see a hilarious IRS sign!
Nessa's Place ---read about Nannito Bandito
Struggling Parents ---find out about natural remedies for ADHD


Wednesday, April 16, 2008

Trails Edge Camp

As summer is quickly approaching, I thought I would share some camps I've come across lately.

This week's featured camp is Trails Edge Camp. This camp is for children ages 5-18 who are ventilator-dependent. It's a great opportunity for these kids to meet other kids like themselves and also a time where parents can take a break and know that their child is in good hands.

Of course, like any other camp, there are tons of activities planned like horse back riding and fishing along with all the other typical camp activities! I think it's great that camps like this give children the opportunity to be be able to do things that other kids at camp are doing. They just have to do them a little differently! One thing I think is incredibly neat about this camp is that there is a tree house that the kids can go up into. They get hoisted up in a sling and harness!! Very clever!!

If you have a child who is ventilator-dependent you should check into this camp. It's located in Mayville, MI and is absolutely FREE to children and parents. See what generous donations can do!!

Let me know if you go!!

Wednesday, April 09, 2008

Great Resource for Tube-Fed People

One of the resources I found early after being told that Gus would need to be tube-fed for awhile was the Oley Foundation. I did a search for tube-fed children and support groups and this foundation is what came up on the results page. I'm thankful that I discovered this resource because there is tons of info and tips. I encourage you to check it out if you have tube fed child!

I noticed too that there is a section on Omegaven now. This is the new drug that has had incredible results in repairing the liver. This is huge for those people who are on long-term TPN because the lipids in the TPN basically kill the liver. I found out about it a month after Gus died. It's not an easy medication to get, but there is info at the Oley Foundation site that tells you how to actually go about it. At the time I found out about the med, it was only being administered in one there are at least 25 hospitals who are giving it. I can't even begin to tell you how happy this makes me. TPN induced liver disease kills infants...the adults seem to do better but not by to know that this med is becoming more available to small ones with short bowel syndrome really makes me happy.

I still get the newsletter because I want to stay on top of the information. Hopefully, we'll be adopting medically fragile children in the near future and I'm sure most of them will have a g-tube, ng-tube or central line. I'll be a better caregiver if I stay informed!