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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, December 6, 2007

What we found out...

Well we got a call from Dr. Su today. He was so apologetic for having us ride the roller coaster. We understand to some degree and we know that they have Alex's best interest in mind. As well as the rest of our little family. He talked with the surgeon and they came to the conclusion that it would be best to wait until the first week of January. It will be good to have Alex home with us so that we can enjoy the holidays as a family. He also said that we needed to be careful not to get Alex sick, but that we could enjoy our families homes and a couple other outings if needed. So we will be careful but still try to make memories with him. I haven't totally made up my mind about it, but I was thinking of taking the kids to sit on Santa tomorrow. I think Ry is really at an age when she is begining to understand and I would love to have her remember fun and happy things. She is loving the season and all the bustle that goes with it. I collect Nativities and She has taken all the baby Jesus's to watch over. I have to round them all up and place them back with their appropriate families each time. Today we made a paper chain that counts down to the day. At the top we put a big yellow star. We wrote Christmas Day, Jesus's birthday, Gracie comes and Santa comes on it. She is so excited. We really enjoyed the achievement day carollers the other day. Thank you. I don't think I ever posted this, but all of Alex's stool samples came back negative.. Good thing too, I hate C-diff. He still has his little flare ups but I think that it is just because he is just about to break two little bottom teeth through.....

5 comments:

Terry said...

Sounds like you got some answers. Sorry I haven't called all week it has been CRAZY!!!! I love all the pictures. It looks like the ginger bread houses went great! I miss you lady!!! LYL!

Jennifer said...

Ok... January is good... getting to be with family over the holidays is better... and no C-diff is great! Can we still play or is that bad?

Andrea said...

Our girls sound so much alike! I'm so glad to hear about Alex. He looks so cute in all his photos. We went to see Santa at Fashion Place and he was really great. Andrew didn't sit on his lap and Ashley just wanted to stand by him. It went really well. And they have lots of Purell.

Mindurs said...

Alex will be home for Christmas - that is good! Yes, I agree Ry is at a good age for Christmas - enjoy!

Tami Acord-Nelson said...

Hey Brynn, what is the C Diff? Thatch has had some serious colic and I cant help but feel like there is something they are missing. I swear he has had 4 bouts with the Rotavirus. I have had him to the gastrointerologist and we put him on Prevacid and he gave him Levsin (which I have not filled) but my mommy radar just keeps saying its not right.