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.

Thursday, January 3, 2008


Well it is a new day, and hopefully Alex will start getting better. After a long night I am sure Alex is in for a hard day. He was having a hard time as the sedation was wearing off and kept thrashing, and moving, they had to parilize him once, which gave him about an hour and half of good rest. We really hope that getting him off the ventilator will help him calm down, who wants something down their throat anyway??? We will keep you posted as the day goes on. They did tell us this morning that except for the coming out of sedation things were great last night.


Clifton and Melinda said...

We all hope that everything goes well today. We are praying hard for your little family. Please let us know if there is anything we can do to help with Ryleigh. Love you guys!! I know my mom is praying too!

Love, The Anderson's and Luthi's

Jennifer said...

Man, what a strong little boy he is. We will just keep on praying that all continues to go well.
Love yall
The Englands

Terry said...

Sounds like he is doing really good. He is such a good boy. You are all in our prayers.
Love The Gammon's

Marti said...

Me and Nic were talking the night before his surgery and thinking of everything that could happen. Nic said, "You know, as much as could go wrong, that little boy has a lot of fight in him!" It is so true! He is a fighter! We pray for you guys!

Esther said...

still praying, but beginning to breathe little sighs of relief.
so glad things are going well.

Mindurs said...

I am glad to hear his first night went well! Alex is such a trooper! Sending our love!

Sara said...

Sounds like things are going well. I just wanted you guys to know that I work pretty close the PCH and if you need anything or if you need me to take Ry home one evening I can. Please call me. 401-6064 or 867-6064.

Anonymous said...

glad to hear everything is going good. Ellie kept asking to play with "ry-dee" today so we called a couple of times. we didn't know what you guys were doing so we went to your blog and found out. (some friends we are. - sorry. we really do care a lot about your family and what is happening, if you need anything call us anytime)
If you need us to watch (play with!!!) Ryleigh let us know. I know Ellie is dying to show ryleigh her new Barbie house so they can play barbies! Your in our thoughts and prayers!
love, Missy and Ellie