I am so happy for you and Silas!!!!
YAY!!
I did shed a tear or eight!

6/24/2008 8:17:16 PM

FIRST!!!

6/24/2008 8:25:59 PM

SECOND!!!

6/24/2008 8:27:08 PM

[Edited on June 24, 2008 at 8:36 PM. Reason : ?]

6/24/2008 8:36:26 PM

so what happened?

6/24/2008 8:36:51 PM

something about some results about something for her baby

..i think

that's what i saw her say something about hoping for earlier

6/24/2008 8:46:55 PM

bttT-cells!!!

6/24/2008 9:08:13 PM

the babies immune system is functioning better then they had hoped and the family is out of the woods medically?

6/24/2008 9:20:17 PM

In a nut shell:

Quote :

"Duke University Medical Center researchers have developed a combination immune suppression and thymus transplantation technique to save infants born with complete DiGeorge Syndrome, a fatal genetic disorder. Babies with complete DiGeorge Syndrome have no thymus, a gland important in the maturation of T cells -- specialized immune cells that help protect the body against viruses, bacteria and other pathogens. The thymus teaches T cells to fight infection while not attacking the infant's own tissues. "

http://www.sciencedaily.com/releases/2004/08/040804083624.htm

My son is finally up for his transplant on Tuesday.

[Edited on June 24, 2008 at 9:24 PM. Reason : THANKS, AMNA!!!]

6/24/2008 9:23:33 PM

6/24/2008 9:44:11 PM

6/24/2008 11:19:43 PM

it was my prayer that helped

just sayin...

6/24/2008 11:20:05 PM

7 tears is sincere. 8 is just overdramatic.

6/24/2008 11:21:06 PM

yay!!! then we can have the tww sleepover

6/25/2008 1:25:58 AM

should've taken him to House

6/25/2008 1:27:39 AM

I wasn't aware of what you were going through with your son.
I am so incredibly happy for you.
You and him (and your husband) will be in my prayers as you tackle this issue.
everything helps make you AND the little one stronger....

6/25/2008 1:29:27 AM

this is the first ive heard about this.

im very happy for your good news, Erica i can only imagine how stressful this has been.

and will continue to be, for some time....

peace and strength

6/25/2008 1:33:52 AM

Good luck bb.

6/25/2008 1:47:00 AM

I'm very happy for your and your child.

6/25/2008 6:13:48 AM

good luck!

6/25/2008 6:20:47 AM

My Positive thoughts are being sent yall's way....please keep us updated!

6/25/2008 6:25:50 AM

6/25/2008 8:57:13 AM

thats is so awesome. im so happy for your family. good luck with the transplant!

6/25/2008 9:01:42 AM

WOW...That's cooler than a pool in the north pole with ice cubes in it in the middle of december during an eclipse...Best of luck to U.

6/25/2008 9:21:56 AM

Oh my goodness!!! YAY!!! CONGRATULATIONS!!!!

I didn't realize that he had a genetic disorder. I thought you meant something about his lip. But this is sooooo awesome! I'm SO glad you found a match for your baby boy!

I hope all goes well with the transplant!

6/25/2008 9:57:45 AM

Quote :

"yay!!! then we can have the tww sleepover"

Seriously. Silas and I have basically been under house arrest since we brought him home from the hospital because he has to be kept in reverse isolation. I have missed people! I love my husband, but I get tired of seeing his ugly mug. :-P

THANKS EVERYONE!!! We've been packing things up this morning waiting for them to call and let us know that his room is ready. I'll probably be on TWW a lot because we'll be in the hospital at Duke for the next month or so. Not a lot to do other than play on the wireless.

6/25/2008 12:32:37 PM

wow, we learned bout digeorges when studying t-cell maturation, congrats on getting the treatment. Its awsome that there is a hospital so close with the ablity and experience to treat your son.

6/25/2008 12:51:07 PM

any updates?

6/27/2008 12:45:00 PM

wow how'd i miss this??

AWESOME!

6/27/2008 1:31:04 PM

We got settled into our room at Duke Children's on Wednesday. They spent all day yesterday trying to get some kind of central access and eventually had to resort to doping my kid up on ketamine and benzos in order to get him to hold still enough for them to put in a femoral line. This morning they started ATG infusion and will continue it over several days. On Tuesday morning they will do the transplant.

Silas is quite the flirt and has all the nurses wrapped around his little finger. Right now the little guy is asleep after a spending the morning macking on the ladies.

6/27/2008 2:48:07 PM

Awesome! I'll keep your son and family in my prayers. I hope that it all goes well.

6/27/2008 3:00:15 PM

any news?

7/2/2008 9:20:11 AM

Surgery was yesterday after spending three days of ATG.

He was a little wild thing when we took him back to the OR. He was grinning, squealing, and playing. When he came out of anesthesia he was grinning and "talking" up a storm. He absolutely won over the doctors and nurses. And surgery could not have gone better. The muscle was nicHe had a little morphine for the pain last night, but this morning you wouldn't know that the little guy had surgery. It's actually a little awe inspiring that something so important and life changing has happened and he doesn't have a clue.

We will be in the hospital for another week while his incisions heal and we meet with other specialists while we are inpatients. Then we wait (for several months) for engraftment.

Right before being wheeled back to the OR.

7/2/2008 10:18:24 AM

yay! i'm glad surgery went so well

hopefully his recovery goes well, also.

7/2/2008 10:26:20 AM

that's awesome thanks for the update

7/2/2008 10:28:43 AM

yay

7/2/2008 10:34:30 AM

YAY SILAS!!!!

7/2/2008 12:24:53 PM

updates?

8/9/2008 5:28:24 PM

Wow, good luck to you!

8/9/2008 5:42:51 PM

8/9/2008 5:47:24 PM

We are just waiting.

Silas's transplant site healed up very well and there have not been any signs of graft vs. host or rejection. We are at home still on reverse isolation, but we have cheated a little bit by letting my brother and Josh's sister hold him. We're at Duke once a week for labs and infusions. Silas has a biopsy of his new thymus scheduled for September 5th to see if his T-cells have taken up residence. Doctors do not expect to see naive T-cells circulating and functioning until sometime in the Spring. So Silas will be on reverse isolation until then.

Silas is now 7 months old and it had been an adventure getting him this far. I do not have words for how incredibly blessed we have been because he is not only still alive, but healthy! And so very happy.


Silas earlier in the week with his occupational therapist.

8/9/2008 5:47:53 PM

you let a BLACK person in your home?!

8/9/2008 5:52:37 PM

I'll let ANYONE into my home as long as they suit up.

If he didn't look so much like me, I would swear that he couldn't possibly belong to us because he is the happiest little thing that I have ever come across. It's almost unnatural.



[Edited on August 9, 2008 at 6:57 PM. Reason : .]

8/9/2008 6:57:07 PM

hes adorable

i'm glad to hear that he is doing well, and i'll keep you, your husband, and silas in my prayers

8/9/2008 7:05:31 PM

he's adorable... so, what's the long-term prognosis? Will his immune functioning ever be at a "normal" level or will he always have to be isolated from potential germs?

8/9/2008 7:07:48 PM

I do not know any really long term prognosis because this is still very much research and their oldest transplant patient is now only 13 or 14. I know that 73% of her children have survived beyond their first year and that some of them go on to be healthy enough to go to school with other children. I believe that the functionality of their immune system just depends on the individual. Every child's body is different and goes on to respond to pathogens with variable success.

But Dr. Markert thinks that Silas is going to do "fabulously."

Thanks for the positive thoughts, everyone!

And if you are really curious about DiGeorge Syndrome and thymus transplantation, our doctor was recently on Good Morning America and Nightline.

http://www.abcnews.go.com/GMA/story?id=5377504&page=1

[Edited on August 9, 2008 at 7:22 PM. Reason : .]

8/9/2008 7:14:59 PM

Just curious...does Silas have any other problems associated with the DiGeorge Syndrome (I know heart problems are often associated with it) besides the thymus and cleft lip? I was curious about the syndrome and have been doing a little research on it since reading about Silas on here.

I'm really happy to hear he is doing so well with the treatment plan and I bet you guys feel lucky to be so close to Duke since they're the only hospital that has a treatment plan. Congratulations on the operation and I hope he continues to do fantastic!

8/9/2008 7:42:37 PM

Yes, my son has other differences. Some are associated with DiGeorge Syndrome and others are not so closely associated. But DiGeorge Syndrome is a spectrum disorder, so it varies from person to person.

He has what is known as atypical complete DiGeorge Syndrome without a 22q11.2 deletion.

-cleft lip and palate
-under-developed midface
-idiopathic seizure disorder
-atrial septal defect
-brachycephaly
-misshapen "ribbon-like" ribs
-"handle-bar" clavicles
-finger contractures
-overlapping toes
-GERD
-torticollis
-and a developmental delay

The impact DiGeorge has had on Silas has been entirely physical and for that we are eternally grateful. Many of these children are autistic, low IQ, or have other cognitive and emotional impairments.

[Edited on August 9, 2008 at 8:01 PM. Reason : .]

8/9/2008 7:59:46 PM

Can they do any reconstructive surgery on the cleft lip/ palate when he gets older? Please don't take that the wrong way... like I said, I think he's adorable... I'm just curious.

8/9/2008 8:02:33 PM

People have asked me that a million times, I am not offended.

They usually start the process at 2 months, but Silas was not medically stable at that time.

His lip will be done when he has his thymus biopsy in September, then they will close the roof of his mouth 4+ months later. He will likely have several procedures done throughout his childhood and adolescence to refine his appearance.

My husband and I are not too concerned about it. My husband had a cleft lip and I had a cleft palate. So we are old pros.

8/9/2008 8:08:42 PM