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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, October 18, 2017

September 12 & 13

I really really had a bad mommy moment, look at her little eyes. I had taken MayLee to STEAM club (Science, Technology, Engineering, Art, Mathematics) that morning. Then took her to preschool. Ran to pick up Alex to take him back to see the Doctor about his lip results, and got a call from the preschool teacher that May wasn't feeling well. The results of Alex's test was all good news. His lip needed more time, it is common for anti-rejection medications to cause mouth sores, a condition that was only worsened by the baseball injury and then the healing time dragged on and on. And he was also clear of Aspergillosis, a huge relief to us all. So I ran him back to school and then went and picked up MayLee and ran her to the pediatrician. Rapid strep came back positive and well, since it runs rampant in our home. I had Asher checked as well and sure enough an ear infection later told me that he at least would need to be treated. May also had a bit of pneumonia in her lungs (common with other illness to have because of her weak lungs) On the way home we got a phone call that Eden wasn't well. I picked her up from school and she and I headed to the instacare so that we could both be checked at the same time. Me negative, her positive. I was sure it was only going to be a matter of time. Yup, Alex started complaining of his throat hurting and we took him to the pediatrician. He needed the antibiotic shot, it hurts really bad right in the rump. Oral antibiotics make his c-diff return and I would rather he be sad at me for a minute instead of deal with months and months of stomach aches and the runs. Strep is hard on our family. Later that Sunday, daddy nearly fell over while standing during a meeting and went to the doctor who sure enough diagnosed strep. Ryleigh and I washed our hands, till the skin was raw and had minor aches but think we come out unscathed. If I had known to keep her home I would have. 
 That little bit of pneumonia makes her breathing freak out. So she gets to have treatments to open her airway.  MayLee also needs a little day time oxygen whens he isn't well. Most things we can do at home. I like having just enough experience and just enough medical equipment to keep us out of the hospital. 



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