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Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Sunday, January 6, 2008

Day of rest..

For Alex this was truly a day of rest... He did get his drainage tubes out... They are talking about doing his spontaneous trials tonight... And maybe extubating again tomorrow..... I think that is all the news, he has had some wonderful visitors and we are so thankful to all the friends and family who have supported us yet again...

8 comments:

Anonymous said...

Thanks for keeping us posted. I check your site, think of you and pray for you many times a day. Good luck with the trails tonight.
love, Christina and family

Anonymous said...

We enjoyed seeing the pictures. I think it was great that you included one of the sleep rooms. It will give those who have not had the opportunity to experience them in person a little perspective on what they are like. We are keeping your guys in our thoughts and prayers!

The Quinney's

Anonymous said...

I am glad that Alex had a day to rest. I hope you did too!!

Anonymous said...

I hope this week goes well for Alex. My son, Cohen, will be up there from Tuesday to Friday receiving chemo. If you need an eating buddy or just someone to visit with let me know. You can email me for my phone number; ashee003@yahoo.com.
Ashley Wiley

Anonymous said...

I am so glad to hear that he had a restful day. We are thinking of you and love you!

Jen

Anonymous said...

one day at a time. he'll get stronger, faster, and be smiling and laughing again before you know it. ;-D

i'm going to be ut at primary's tonight to see my neice who had her surgery today. will you facebook or email me so that i can come and visit you as well?

Anonymous said...

I think there needs to be a fund raisor or something to build a few master suites for the parents staying at Primary's, you guys deserve it. What a wonderful hospital but the closet sleeping arrangements- yikes! luv mindy

Anonymous said...

I agree, it would be nice to do that. They do have the Ronald McDonald program that helps families with housing. It is a wonderful program. We have been praying for Alex and your family. Brin it was so nice to visit with you a few weeks ago and the
Spirit is definitely with you and your family. You can feel it in your home. If we can do anything, anything, please let us know, we'll be right there! Ben and Cheryl Herold