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Jelveh Designs - Glass Beads Torched One-by-One

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Go Back   Lampwork Etc. > Beads of Courage > Beads of Courage

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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  #1  
Old 2010-03-23, 7:28pm
mewsicmama's Avatar
mewsicmama mewsicmama is offline
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Join Date: Jan 22, 2008
Location: Wayward Pines
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Default 03/23/10 Update on Conner

I just copied the posting at his Carepages site - here it is:
--------------------------------------------------------------------------------

home....
Posted 9 hours ago
Just wanted to let everyone know that we are home now. I'm so sorry I haven't updated sooner but was having problems with the internet at the Ronald McDonald house, and never got around to posting.

We were able to be discharged to the Ronald McDonald house on the 17th, 1 week and 1 day after the surgery! We stayed there through the weekend, and on Monday brought him back to the cardiology dept. for removal of stitches and clearance to return home. His chest X-ray was very clear, and his EKG looked good. Dr. Rivenes said he should be the poster child for the Fontan, that because of fluid most kids stay for way longer. We were told to expect 3-6 weeks, but actually were out of the hospital after 1 week and home just 1 day shy of 2 weeks. How amazing is that!!

He's doing really well, his appetite is slowly returning. He ate 2-3 bites of eggs this morning, and a few goldfish crackers. That's more than he's been eating all day, for months now. In the hospital, and a RMH, he wouldn't even eat Jello, ice cream, cake, nothing. I'm hoping to see my chunky boy come out again soon....

He is only on 1 whole baby aspirin a day, Lasix twice a day, and Enalapril twice a day, and Xantac until he starts eating better. I can't believe how well he's doing, and how long we've been dreading this surgery and it's "extended stay" at the hospital. I guess Conner figured he'd show them it's possible to leave after a week!

Conner had his first real bath in 2 weeks yesterday! He was only allowed sponge baths because of his incision and drainage tube stitches. Man, did he enjoy it! He still can't "soak" or have the water up to his wounds, but he still had fun just sitting under the running water, and he sure does smell better!!

I've got piles of paperwork, bills, etc. to go through. I can't even imagine what it would be like if we DID have to stay the month they were predicting. I'm so sorry to leave some of you in the dark about his recovery, but I've been updating our facebook way more often, it's so easy just to do it from the phone.

Now that I'm home, I'll try to do better. Conner got so many cards from the hospital, thank you all! They are something that I treasure, and I know he will too, when he gets old enough to understand.

I STILL haven't found the time to sit down with Conner's beads of courage and get them restrung, and I have some awesome custom ones that were generously made for us, from some extremely talented and wonderful people that I met on a lampworkers forum. I've gotten Conner's tennis shoe, to represent his missing the heartwalk, and the bed, to represent his nursing home stay, and a bead with a hole in it, to represent this surgery coming out of nowhere, and a heart with stitches on it, and 2 people are working on beads to represent our nights at the Ronald McDonald House, and a doctor bead, for Dr. Mott leaving TCH.... I can't wait to get them all done, I just can't find the time right now to restring them!!

Thanks for keeping up with us, and hopefully for years to come all my updates will talk about how wonderful Conner is doing, with sats in the 90's, woo hoo!!!

Tamara
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Old 2010-03-23, 9:24pm
tamaralemus tamaralemus is offline
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Well, I came here to update you guys about Conner being HOME now, but Mewsicmama beat me to it!

We had a really fussy day today, and after a few hours of crying I was about ready to lose it. I plopped Conner down in front of the TV, as my holding him wasn't helping anyway, and got out his bead strand. I spread it out in front of me and looked at all the beads, and at the pile that he has earned but I haven't added on yet, and realized how far he's come and what all he's been through. I started counting, and gave up at 200, when I saw how many more were left....

That gave me the little prod I needed to re-focus on him, instead of myself, and hard all of this had been on ME. It reminded me how hard these last few months have been on HIM. I put his beads back up, in his brand-new sports bag (thanks Colin!), and got on the floor with my baby and after an hour or so he settled down and we had a nap, right there on the floor. When he woke up he wasn't in a much better mood, but his beads helped me refocus where I needed to, and I was able to deal with the rest of the day.

He is sleeping peacefully now, wrapped in his daddy's arms, and his prayer quilt from Candace (patienthand). I just wanted to take this time to update you guys and to say thank you, for keeping up with Conner's progress, and for sending beads and quilts and prayers and hopes our way. You guys have the most generous hearts I've come across outside of the medical community, and that's amazing and you should be so proud. I was reading the pig thread and my heart just swelled at the joy I'm imagining that Dylan will get from reading all of your notes and seeing the love and time that ya'll have invested in him. Maybe no one but God can "fix" some problems, but what BOC, and you guys, do is make kids and parents, feel a bit of joy and accomplishment.

There is actually no word to express exactly what I'm meaning to say, but "thanks".

Tamara
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Old 2010-03-24, 3:27am
likes to make glass stuff likes to make glass stuff is offline
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having to deal with medical things is exhausting with a kid. it's much worse when they don't really understand what's going on, because they are too young. I've been there, done that, not to the extent or length of time that you guys are.

my lone advice-make sure to get some time for yourself. Just a little, to recharge your mommy batteries. Don't feel guilty or bad for getting frustrated. It's normal, everyone goes through it. Schedule some "you" time every so often, so that as long as things aren't too crazy, you've got that respite. It'll do you wonders.
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Old 2010-03-26, 10:19am
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mewsicmama mewsicmama is offline
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First chance I've had to come back in here and check on this thread since my baby Brandon (he's 30 - lol) had his tonsils out and a septoplasty on the morning of the 24th. The last couple of days have been an endless parade of popsicles, gatorade, pudding - you get the idea. He just finished eating some soft scrambled eggs so I feel like that's a huge accomplishment. YAY!

Please give Conner a gentle cuddle from me Tamara. Once they are in your life they will always be your baby, no matter how big they get.

Much love,

Shari in southern California
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Old 2010-03-26, 10:45am
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LoriGreenberg LoriGreenberg is offline
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Continued prayers for you and your family coming your way Tamara!

And thank you for your enCOURAGING words as well.
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Lori Greenberg

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