Hello all, 

We wanted to write a quick note to say thank you for the outpouring of love and support. We feel so lifted up by our community and we couldn't do this without you. 

In the past week Rena has started two new pain medications that have made a huge impact on her comfort and quality of life. We are so grateful. For the first time in 6 weeks we are able to set Rena down without having her cry in pain. She has been enjoying snoozing and hanging out with us in her awesome P-Pod chair that we bought back in November with GoFundMe contributions. Now that Rena can sit on her own for periods of the day, we are able to more easily care for Peter, our home, and each other. Of course, we still love snuggling and rocking Rena much of the time. With these additions to Rena's medication regimen we are all sleeping better as well. 

At the end of last week we also transtitioned Rena from receiving Palliative Care to Hospice Care. This means that her care will now be managed at home through the Hospice team rather than by many different specialists through Lurie's Hospital. We are looking forward to streamlined care at home with Rena's comfort in mind. Rena's doctors feel that given the speed of disease progression we most likely have a few months left with her, but she may also be with us for another year or two. MLD is unpredictable. We are grateful that our Hospice team will be supporting our entire family and providing Rena with amazing medical care for however much time she has here with us. 

Last week we also decided on Rena's Make-A-Wish. Make-A-Wish will be making a donation in Rena's name to the MLD Foundation. We are so grateful for our community and how you all have provided for Rena's needs allowing us to purchase all of her equipment without taking the time to get everything approved by insurance and allowing us to pay for medications that are not covered without a second thought. We wanted to pass along this gift and felt that the MLD Foundation would be the best way to do this. The MLD Foundation purchases P-Pod chairs for children with MLD in addition to supporting MLD families in many other ways. 

Thank you all again for your gift cards, donations, offerings to help with Peter & Rena, prayers, kind words, etc. You all make us feel loved and help take care of us in many, many ways and they all mean so much. 

All our love,
Hannah & Christian