On Sunday Eli had quite a busy day and was the star of a music video being made by the band 8TH day for RCCS. Hopefully no one should ever need them but for us RCCS has been a lifesaver with their help with insurance. Without them Eli would be on a lower grade insurance waiting sometimes hours sometimes weeks or months for treatments that BH we don’t wait ever for approval for.

Eli over the last few weeks has drastically lost weight and it is very concerning to us and unfortunately the DR in CHLA doesn’t seem to be on the same page as us anymore and we are now looking to change DRs. The responses to concerns, questions and issues can take vital hours or days sometimes and its unacceptable to us. To be inpatient for many days at a time and to get chemo daily for a week and not hear or see the DR once check in on him to us shows a lack of caring.

Monday morning Elis home health nurse came to draw his blood and since the DR didn’t order it stat instead of knowing results in a few hours we didn’t get them until we called instead of being called and found out this morning TUESDAY how very low they were and took Eli right in for both blood and platelet transfusions. BH Eli was able to get direct donor “yidishe” blood as always arranged by Bikur Cholim.

There is nothing scheduled right now as far as treatments go and because TPN made Elis liver numbers go thru the roof and therefore not allowing or being eligible for some treatments we are trying to avoid that and hoping Eli will get his appetite back and gain weight the natural way.

We are hoping to see Eli gain some much needed weight and strength as we continue doing everything possible to get Elimelech Ben Basya bsoch shaar choley yisroel get what he needs and deserves a refua shelayma.