When will the roller coaster slow down? We are finally recovering from our last surgery with the vesicostomy. Now we are concerned about Daniel's skull trying to fill in again. I'm sure this requires some explaining. Daniel's intial problem , the encephalocele, caused brain damage. Evidently the part of Daniel's brain that should tell his skull bone to stop closing up doesn't work. Our neurosurgeon, Dr. J, (one of the best doctors we know) is going to review the CT scan we had done today at tomorrow's appt. with him. Daniel has several man made soft spots to keep his brain from having pressure in areas like his brain stem. When these openings start to fill back in with bone, fibrous tissue, or scar tissue he starts to have symptoms. Some of these include, Darth Vader type breathing, decrease swallowing, which causes major slobber production, uncontrollable gagging(because of the extra slobber), and less sleep than usual. Daniel is having all of the above. We believe we are only in the beginning stages of this. Daniel has this happen about every year to year half and Dr. J has to go in and remove the part of the skull or tissue that is causing the problem. We have now gone 1 year and 7 months, which is our longest stretch yet. Hopefully we will get some clear answers tomorrow.
In the mean time we are trying to catch zzzz's when we can. Daniel seems to like to stay up at night and be quiet and calm during the day when there are other things to do. So, if you can find a way to bank up on sleeping, deposit some our way, please.
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