westonsmom
New member
O.k. I don't know if I can help, but I will try. First, Weston has a G tube and when he was first born he was on TPN and lipids for months in the hospital. Is Zoey on anything through her G tube? Or just the TPN/Lipids? I am assuming that she must be on something through the G tube if she is throwing up? I don't know how old Zoey is, but Weston was having a huge problem gaining weight when he was on G tube feeds because of the formula they were using. He went to Elecare after months of headaches for us! Elecare is completely broken down and has no milk product. They thought he may have had an allergy to milk and that is why the other formula wasn't working.
As far as support...Is there anyone near you who would help? I know it is hard to ask but you need to find someone to help you out. You need to keep yourself sane and happy. I would ask the social worker at your CF clinic about other programs you are eligible for. Every state has a different program for medically complex children to help with medical benefits. I know in RI it is called the Katie Beckett Law. Ask about something like this.
I wish I could help more. Does your husband have partial custody at all? You need a break. I am so sorry for what you are going through. I will pray for you to get much needed support!
As far as support...Is there anyone near you who would help? I know it is hard to ask but you need to find someone to help you out. You need to keep yourself sane and happy. I would ask the social worker at your CF clinic about other programs you are eligible for. Every state has a different program for medically complex children to help with medical benefits. I know in RI it is called the Katie Beckett Law. Ask about something like this.
I wish I could help more. Does your husband have partial custody at all? You need a break. I am so sorry for what you are going through. I will pray for you to get much needed support!