Sunday, November 30, 2008

A Little Update

So we got some of the tests back and we are more confident now that he doesn't have cystic fibrosis or Shwachman Diamond Syndrome based on the levels of pancreatic functions they could measure, but the doctors will still not totally rule them out. He did another sweat test and his results were even better than the first time, which is good.

We are still awaiting many tests results and if he can get over whatever he has had for the past several weeks, he will be rescheduled for his CT scan of his chest at least. We are going to try to hold off on the one of his abdomen because they said that one is like getting 40 xrays worth of radiation and so unless we think it will give us some answers, we will not do it right now.

He is tolerating his night feeds a bit better, but we had to cut back to half because the full amount was just messing with his system too much.

He had actually lost some weight when we went to his doc for the post-hospital checkup, but he has weekly checks in the office coming up so we are hopeful he will show some improvements soon.

Jayden is still bordering on going back in the hospital right now though. His breathing is labored and we can only kick up his medicines so many times in a row before it becomes ineffective. Please continue to pray he can regain some steady health at least.

Ethan has been such a good big brother. He loves singing songs to Jayden when Jayden is upset about his treatments and kept rubbing his head to make him feel better. Ethan is getting quite excited about Christmas too.

Hope you all had a great Thanksgiving!

1 comments:

Unknown 9:27 AM  

Hi! I am not sure if you have heard about the Shwachman-Diamond Syndrome support list-- families of SDS kids and SDS adults. To subscribe, send an email to shwachmansyndrome-subscribe@yahoogroups.com If you would like booklets on SDS sent to you, you can send your mailing address to shwachmandiamondamerica@embarqmail.com Shwachman-Diamond America is a non-profit that raises money for SDS research and education www.shwachmandiamondamerica.org

I have two boys with SDS and you can meet my family at: www.shwachman.50megs.com our family website.

We also have a blog with FAQs on the support list-- files of info www.shwachman.blogspot.com

you can email me and I can help you, too or add you directly to the support list. We have people going through diagnosis on there...people with SDS and CF kids ....many people end up staying becausethe folks are so friendly. My email: catholicmomof3@gmail.com

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