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Beads of Courage -- Discussion for all things Beads of Courage; the only not-for-profit, arts-in-medicine program putting to use the talents of glass beadmakers to uplift children dealing with life threatening illnesses, their families and the people who care for them. Families, clinicians and artists alike are welcome to join in! (Thank you to Lampwork Etc. for supporting Beads of Courage and helping to foster communication!) PHOTOS OF INDIVIDUALS OR CHILDREN ONLY ALLOWED WITH THEIR SPECIFIC CONSENT.

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Old 2010-04-08, 9:06am
tamaralemus tamaralemus is offline
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Join Date: Feb 21, 2010
Location: Port Neches, TX
Posts: 11
Smile update on Conner

I just wanted to update you guys on how Conner is doing (wonderfully)!!!
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I'm rather short on time, so I'm copying from his CarePages. Thanks so much for the support and prayers, I know Conner definitely has people here cheering him on...

Just a quick update to let you guys know that Conner is still doing great! Last week's terrifying episode has NOT repeated itself, thank goodness. Our small, portable pulse ox has arrived and we are able to spot check daily and that helps ease my mind a lot. Still waiting on the DME company to get the home one approved and delivered, haven't heard of any problem with that yet.

We have bathed Conner several times, and gone from very warm outside to very cold indoors, and vice versa today! No further episodes of acrocyanosis and he seems totally fine.

Starting Monday night we discontinued his 10 mg. of Lasix at night, only doing 10 mg. each morning, along with normal Enalapril twice a day and 1 whole baby aspirin daily. He's had no signs of heart failure, and seems to be handling the Lasix weaning very well so far.

He has so much energy now! He doesn't get short of breath anymore, and is able to walk across the house without laying down to catch his breath!! He played in the driveway yesterday for 20 minutes without once stopping because he was too tired. He is a totally different child than before surgery, it just warms my heart. We are praying for a long "honeymoon" period before his heart starts failing. There are a few people out there that are 15 or more years post-Fontan, with no transplant yet!! That's the group we are desperately hoping to become a part of!

Speaking of transplants, please keep fellow carepage brother DylanWilkerson in your prayers, please. He is a 19 year old with Tricuspid Atresia, like Conner, and received his new heart in August of last year. He now has been diagnosed with post-transplant lymphoproliferative disorder (PTLD), B cell lymphoma, which can occur in immunosuppressed patients following organ transplant. He begins chemo treatments tomorrow, and they have had to back off the immunosuppressants in order to treat the cancer, which can cause rejection of the transplant. It is an extremely delicate balance to both keep the heart from rejecting, yet at the same time allow his body and the chemo to fight the cancer. Unfortunately, this happens sometimes in transplant recipients and I am very upset for him. He has had to fight his whole life, like Conner does, and now, shortly after getting his new heart, he now has to fight some more. Thank goodness he is in okay spirits, and he is stubborn and strong. If you can, please stop by his page and leave him and his mother, Cynthia, a message of support.

We are doing well, although still on "house arrest" for another few weeks. Hopefully at our cardiologist visit on the 30th we'll be released to go in public! I can't wait to bring Conner to Wal-Mart for the 1st time!!! I can't wait to go to the mall and let him play in the play area, and get a cookie, and take a picture with him in the booth!! I can't wait until we can go to the park and play, and take him out to eat at a restaurant that isn't empty! I can't wait to be able to go eat lunch with Alyssa and bring him with me and let her show off her awesome little brother! We'll be able to go as a family to weddings and parties! And, we can take a family vacation!!! I can't wait!! But, we've waited his whole life for these moments, so a few more weeks shouldn't be too difficult, right?

Thanks for all the message of support and visits, I know CarePages sometimes doesn't make it too terribly easy, and I appreciate the effort.

I'm still waiting on a few beads that are being worked on for Conner's Beads of Courage, but once I get them I'll be able to "finish" his string. I've already unstrung them all, and added all the beads he earned from this last surgery and recent neurological diagnosis. It was overwhelming, seeing them all piled up, so many, in so many different colors. They are beautiful, just like Conner. They are made from delicate material, just like Conner. Yet they are very strong, just like Conner. They are a reminder of very hard times, and a predictor of them also, just like Conner. Everyone ooh's and aahh's over them, just like Conner. Knowing what each one represents makes me tear up, just like I do sometimes holding Conner. I can't say this enough, I love the Beads of Courage Program!!! They are sitting in his sports-themed carry bag that we got recently from Beads of Courage. It is very well made and lined, and large enough that all his beads fit in it. Once they are restrung I can start carrying it again, and I can't wait.

If any of you guys reading this feel moved to make a donation to the BOC program, or if you'd like to donate to the Ronald McDonald charities, you can go to
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Beads of Courage accepts donations of beads or monetary donations, or donations of the bags for the kids to carry their beads in. Ronald McDonald house accepts monetary donations, or personal items, etc.

Love you guys,

Tamara
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