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.

Monday, July 16, 2007

Wee Wee Wee all the way home!!!

Or was it wha wha wha.... Alex hates riding in the car and so we usually feel very rushed to get our screaming baby home. He came home on Thursday and is doing much better. It seems that the c-diff wasn't completely out of his system and came back. We did catch it very early and we were glad not to have him in the hospital for too long. Friday home health came and he looked much better. Saturday he went to visit the pediatrician. Sunday Jeff was put into the Elders Quorum, 2nd counselor...... Today we went to see Dr. Sue the Cardiologist. Tomorrow the developmental specialist Susanne comes. Needless to say we have been very busy. I am excited to have him doing so well. Dr. Sue said that he is looking great and his heart looks very good. He weighs 10 lbs 3 Oz's and is now in the o4Th %( hey that is on the charts) and is 24 inches long..65% He will be tall and skinny. We talked a bunch about how Alex spent so much time in the hospital and wants to hold off the second repair as long as possible unless he totally needs it and I hope it is a little way off so that he can get even bigger and stronger and over all the little weird viruses. Ry is doing well she is as busy as ever and I don't blame her although is does make me a little crazy. She peed on me last night. She has this habit of climbing in bed with us and she didn't have on a diaper we both woke soaked. So at 2:45 am I was taking bed linens off and washing them and she was crying which woke Alex. After much running about we finally settled down again. In the past 48 hours I have washed Alex's entire bed linens twice and mine twice including my duvet and coverlet. Been vomited on and peed on. O the joys of babies...... We love it.


Terry said...

I am so glad that thigns are going good. He is so special! I wanted to thank you for letting us be a part of this time. You guys are the best! And we all love you so much!! The Gammon's

Anonymous said...

Oh, what a fun way to be woken up. I love it when the kids climb into bed and have little tricks up there sleeve. I am so glad that Alex is home. Hopefully all is well with him for a while. Please let us know if there is anything we can do for you guys. It sounds like you could use a break.
Lots of love,

Jennifer said...

I have heard that peeing on someone is the highest form of flattery in some countries... just kidding. Although I am sure that getting out of bed to change your linens multiple times is a drag, it sure beats sleeping at the hospital- don't you think?! We are so glad that your "new normal" is kicking in.
We love yall.

The Patton's said...

We're glad your home again!!!!! Dr. Su is the best...he really cares about each one of the kids he treats. Alex is in good hands, the longer between surgery's the better scar tissue starts to become an issue as well, hopefully he will stay healthy the rest of the summer. Brinley is also in the process of doing the potty training thing,shes doing quite well...but as you know things happen in the most unexpected times...soooo extra clothes are a must anytime we leave the house. I'm tired of cleaning brown finger paintings in the carpet............!?@!? We love her very much and couldn't live life without her, she makes our lives complete.


Nora Mair said...

I was peed on two weeks ago and I swear a parent only lets that happen once. At least those are my famous last words. Oh it sounds so busy and exciting too--Glad Alex is home and getting bigger.