Bits

* It was dark and we’d just gotten home from dinner and the store. I had my phone in one hand and a used cup in the other. I was watching Izzy and tossed the cup into our large outside trash can. I walked inside and noticed that I was still holding the cup. Yep, you got it – I tossed my Iphone into the trash! Makes me wonder….where’s my mind??!!!

* Nathan is doing SO MUCH better. He is BACK to his happy smiley self. I can’t tell you how wonderful it is to see him feeling well again. We decided to take him off his diet so we could fatten him up – he lost a ton of weight in the hospital. He’s been eating like a pig! He wants to eat EVERYTHING! Today he had ice cream and pancakes – two huge nono’s – he was sooo happy! Already I can see cheeks forming. Hooray!

* Today I decided to blow off his daily therapies and we had a lovely chill out day. After school we went to the park and walked and played in the playground. Then we went to Coldstones for ice cream. We got home and played on the Dynavox. Then we jumped in the pool. Afterwards we went to dinner and then to the store looking at patio furniture. It was a perfect day – he was sooo happy! I loved forgetting all of Nathan’s “extra” needs and just doing what we’d be doing if he didn’t have special needs.

* One terrible thing about Nathan’s recent illness is that he completely lost all of the progress he’d made in therapy in the last year or so. He can’t sit any more, his trunk is jelly again, and his head super wobbly. I’m not sure how this happened – but it sure is sad to lose everything he worked so hard for over a very long time. We are back at square one – but at least we are appreciating his health and state of mind.

* Looking back on Nathan’s recent illness, it makes me furious as most of it was hospital error. He was admitted due to dehydration. Then they failed to give him potassium, even though that’s medicine 101 when someone is dehydrated and vomiting. The low potassium gained him 3 extra days in the hospital, as it messed with his heart and knocked him out for 2 whole days. They waited 3 days to treat him with antibiotics, which meant he continued vomiting because he still had the infections in his body. So of the 6 days in the hospital, probably 4 could’ve been avoided with proper medical care. Which is the reason I HATE going to ER and why I don’t trust doctors. I am trying now to set up home health care so in the future, if Nathan gets sick, we can manage it all at home. I am working with his doctor so we can have a nurse set up an IV, test his vitals, etc etc. In the end it was his pediatrician who noticed the negligence at the hospital, took over his care, and fixed all of their mistakes. So what’s the point of taking him to the hospital when she can manage his case from home? Next time I am not risking my kid’s life by taking him to the hospital.

* I was looking back at last year and I realized that, after receiving 50 HBOT treatments, Nathan’s health improved considerably and that’s when his cognition started taking off. He barely got sick for several months after the treatments. I have started trying to figure out how to take him back to Irvine so we can do another round of 40 hbot treatments. Hopefully we can do this soon!

Speak Your Mind

*