Wednesday, October 1, 2014

Headed to Boston soon...

Once again sorry for the long overdue update, sadly we can’t get any local internet providers at our new house (we are quite good a picking the place right out of service areas) J so it’s taken me awhile to find time to get on a computer.  

Lilliana is currently doing fantastic after a little rough patch. She was having a really hard time at school and then got a horrible ear infection. So after a round of antibiotics and much back and forth with doctors and her school we decided that half days are best for her. Now she goes from 8:00 till 10:30 J it’s perfect for her as she gets to be there for the bulk of the learning time and just misses lunch, recess… She is so much happier and LOVES school again vs being a ball of stress and anxiety.  Her school and teacher have been fantastic and super flexible. 

We made the shift to Children’s Hospital in MN and we have been BEYOND impressed. They are so on top of everything and it has made my life so much easier. Our first meeting with Dr. Dummer was exactly what we needed. She was kind but blunt and HONEST about the severity of Lilli’s health. She agreed that we are at the transplant point and that we need to be evaluated ASAP by Boston. The bad news is that things are really not looking so great for her chances to be a candidate but she agreed we NEED to hear it straight from Boston. 

We had an apt there yesterday and she recommended Lilli see a physical therapist and occupational therapist and see if her “delays” are just her personality/ preferences or if there is a physical reason for her avoidance.  We will also be seeing an infectious disease Dr to discuss Lilli’s immune issues (lack of spleen, PLE, etc.)… Which is something that in hindsight probably should have been mentioned the day she was born! 

Children’s has been in constant communication with Boston and we are knocking off the pre-transplant checklist here while we wait to get booked in Boston.  On Oct 14th Lilli will be having a CT scan of her heart and veins and also a liver scan. 

The current plan is still to get to Boston this October. We are awaiting word of when they can fit us in. 

As a mother I feel like I just know that Lilli will not be a candidate and after tears, anger, and sadness I feel like it might be for the best…. I want Lilli’s life to be normal. I want her to spend the time she has happy, at home, and not feeling worried. No matter what the evaluation shows I know we will be OKAY. 

We know from the last trip to Boston how extremely expensive it will be… gas, lodging, food, etc. We will try to get into the shared family housing close to the Hospital during the transplant evaluation process and then if she is a candidate we have been generously offered a family to stay with while we wait for a heart. 

I have set up a Go Fund Me page for those of you who would like to help us with this finical burden at: