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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.

Wednesday, July 31, 2013

How its been going

Well no news is good news. It means I have been so crazy busy being home that I haven't had any time to update.. May has had a few things that I have felt uneasy about. We have such wonderful friends. Bro Gee came to look/listen to her. She sounded a little junky and her incision looks slightly infected. I took her to the doctor as soon as the clinic opened on Monday and she has an ear infection and popped through two teeth in the process of healing from surgery.  
Airing out her incision.. 
16 total visible stitches 
Kinda looks ouchy
We got the stitches removed last Thursday... The whole....come in any time to get them removed, thing is tricky. I left feeling frustrated and a little forgotten. The stitches were out and that is what matters. It was just an off day I bet. Well May continued to have labored breathing, a low grade temp and just really clingy. She fussed any time I put her down. Neighbors brought in meals. At first I didn't think we would need it. After all May is six months, I am not trying to recover myself. But what an absolute humbling experience. I am so thankful. Because May has hardly let me do anything. I scramble to do house keeping while she naps. So having those wonderful meals brought in was so incredible. Sleeping has been an issue... Let me say, seeing every hour tick by in the night gets old really fast... My brain needs time to reboot and 45/50 minute increments is just not cutting it. Glazed eyes is the new look. I also called pulmo to find out when she can ditch the oxygen... We will discuss it in August when we see them again. The night after I talked to them I had a very strange dream. It was short, I dreamt that both Gator and May needed oxygen this winter and we were hauling around two tanks, gear, concentrator at home. Well, I asked my Ped if we could get a handicap  placard for our car. She told me no, that I was buff enough to carry two tanks, the diaper bag, and the baby in her carseat... I cussed her out.. It was sort of comical because our doctor is amazing and I am not a huge cusser. I really don't even like yucky sounding words like moist... Moist is that place between your toes or behind your knees on hot days... 
I digress... 
Funny stuff, those crazy dreams. 

So after a nice visit to the clinic she is on an antibiotic which we hope will also kill off any infection in her incision. It is coming apart a little I can see the desolvable sutures. ( I will take a photo tomorrow when she's awake) so I am still slightly concerned, just not that much. There really isn't much that could be done. 

I have pictures of the kids first days of school.. 
Tomorrow! 


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