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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.

Sunday, October 5, 2014

The ultimate catch up 3rd edition

When last we left off things were somewhat status quo. As the weeks have progressed Alex's body has declined. One indication of this is where his liver sits in his abdomen. If it's lower in his body that's bad.. It is normally measured from rib cage to bottom of liver. It is more prominent, easy to find and measure when it isn't happy as well. Alex usually measures a 5-6... Two Thursday's ago, it measured at 8-9. We upped his Diurel (diuretic) to the highest dose. This with instructions to have a blood test on the next Monday to make sure his body wasn't getting too dry. Also with a caution that we have upped all his home meds to maximum and the next step would be hospital intervention. In other words, it would be wise to keep a bag packed. We were also waiting to hear if Alex's body had responded to the treatments to lower his antibodies. Nothing had worked before. I was still hopeful but not 100% committed to believing this time would be different. Monday rolled around and our nurse Dylan came to draw blood. I waited for a couple of hours for the results. When I couldn't wait any longer I called. Everything was still pending. It wasn't until the next day that we heard that Alex's kidneys weren't happy. We backed off of the diuretcs. Still waiting on the PRA (antibody panel). On Wednesday we got the best news.... Alex's antibodies had indeed dropped, from 85 to 61. Of course I had a million questions but there weren't any answers yet. Our team knows how much I worry and wonder and wanted to deliver the good news but hadn't had even a minute to plan beyond telling us. Bless them... I jumped around like a lunatic. I squealed, called daddy and all around was fit to be tied, in a good way. 
 Last Thursday at clinic, we rechecked his kidneys which were back to being happy. We thought he could have freedom to eat sodium but he ballooned up. 
Those are some puffy eyes.. Back to watching his salt intake. He was so miserable that all he wanted was to sleep off his sodium hang over. 
We are doing daily weight checks in order to see if he retains fluid. If so we can cut back even farther on his sodium. Even though it's the only thing that tastes good right now. Good thing Heart Momma Jill had my back and found some Ramon recipes with much much less sodium. 
He has been better since Thursday.. 

Now that we've caught you up on Alex. 
Here are a few shots of Ry's birthday party. 
A huge huge thanks to Jordan for letting me borrow the decorations. 



We played some French games and some English games. Pass the parcel was a big time favorite. As was this game^... I can't remember what it's called in French but it's similar to Down by the banks.. 
We also had some American French food and had a dance party. 
The kids had green ribbon week at school. The event kicked off with crazy hair day. Even if Gator can't be at the school he still wanted to do his crazy hair too. 
Here is Ryleigh. She loves the idea of crazy hair day. But this Diva doesn't really want crazy hair. 

Gator wants controlled chaos.

The little girls didn't want crazy hair at all...just cute. 
Ry and I ran the Witches Brew HaHa and totally enjoyed it. We didn't even cry. We must be getting better at this. 
Getting ready was half the fun. 
We had an incredible conference weekend and celebrated this little girl. Which deserves its very own post! 












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