Nicholas on CPAP today, mommy's brave warrior, it lasted from 11am to 4pm.
The doctors took off your ventilator today @11am & put you on CPAP which allows you to breathe on your own while still having the neccessary air flow. Mommy was very hopeful, wishing & praying that your breathing will improve. In the doctors words, you were extubated.
However, at 4pm, blood tests showed that you have retained too much carbon dioxide and they will have to put u back on the ventilator. Mommy was naturally very sad .... well as the nurses and doctros say, you may have a chance again.... yes .... let's pray for that.
In the meantime, mommy is praying for your chest walls muscles to become stronger so you can start breathing without the ventilator which goes all the way into lungs via your mouth or nose & where oxygen is pumped to you. With the ventilator, the chances of respitary infections are very high ....
God please strengthen Nicholas's chest wall muscles and lungs. 
Nicholas's mucus and saliva being removed from his mouth because he is not swallowing well.
Dr also updated that the prelim muscle biopsy results are out and it is pointing to be either SMA, myopathy or myotonia.... mommy's world seems to be crumpling over n over again.... but I am still praying that the doctors diagnoses are wrong! Please....
I occurred to me that god is using you little Nicholas to teach mommy alot of survival and also strength. You are so tiny n fragile, but with a strong fighting spirit. Fight on my little warrior!!! mommy is with you...
Daddy, Mommy, and Nicholas It pains mommy to see all this needles and tubes in your little body. My little fighter.
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