Bli ayin hora all has been going as planned and well over the last month + since the last time I sent an update. On 3/3/14 was the final day of the treatment plan which was when Eli finished the last cycle of Accutane. The side effects of it which were dried throat and chapped lips etc are finally getting better.
Eli has been in school basically full time and is BH doing very well. He is catching up on all the learning he has missed and continues to impress us, his teachers and everyone by his level of knowledge and maturity. He feels physically stronger and is able to get around on his own with little or no help.
Over the past month we have begun to reduce the TPN from its initial daily dose of 12 hours nightly down to 8 hours a night and now its down to 8 hours every other night “halevay vayter”. The goal is to get it in the near future to zero at which point beezrat hashem they will remove Elis central line.
The reason for this update is that this week we need some extra tefilos as starting Monday morning and continuing until Thursday morning each day Eli will have a scan/test/procedure. Monday morning is a CT scan, Tuesday is MIBG injection, Wednsday is MIBG scan, and Thursday is the bone marrow procedure. We look forward to beezrat hashem continued good results on all the above mentioned tests and we should have the results by the end of the week on all of them.
In the meantime as always please have Elimelech Ben Basya in mind a little extra this week as we go for these scheduled scans. Please also have Ben Zion Ben Rus and Chana Tova Bas Esther Shoshana both who are also fighting this terrible machla.