Trekking Along

We're still here...it's been a rough couple weeks. Lizzie continues to take her baby steps of progress, but I guess for me, it's the whole accepting of the situation that has been hard.

I'm so grateful the tumor is out. I'm so grateful we still have our little Lizzie here on earth. And I'm grateful that her personality is coming back to us.

I've just been so unbelievably sad about the conditions she will struggle with and wondering what her quality of life will be like dealing with hypothalamic obesity. She has already had comments made to her about how big her tummy is, etc. from kids her age. I don't think they're trying to be mean, but it still is heartbreaking for us as parents. We talked and I told her that yes, her tummy is bigger than other kids, but that it's not her fault, it's a result of her tumor and what happened to her when they sliced through her brain. We're just trying to take the approach of honesty about things and then hopefully, armed with her knowledge, she will be able to face tough situations and mean kids with strength. We want to do things right and will soon be meeting with a pediatric psychologist to help Lizzie and us through figuring out our new life.

I feel like I'm coming out of the sadness of it all and Ben and I know without a shadow of doubt that whatever has happened and whatever will happen is the Lord's will and that is has a purpose greater than we currently know or can comprehend. There have been so many miracles in our life.

Lizzie's short term memory issues are pretty funny these days. The other day she went down for a nap and then woke up thinking it was morning...I couldn't convince her otherwise even though I talked about stuff we had done earlier that day...she was certain I was talking about the day before. The short term memory is also good because she gets over her sadness pretty quickly and seems to easily forget hard things that happen.

We finally decided that Lizzie having her own room needed to be a permanent thing and so we turned the toy room into a room for Spencer. He is glad to have his own room again - and Lizzie is glad to have a room of her own that is permanent. Calli on the other hand is not crazy about being by herself, but it's just one more adjustment we're dealing with...hopefully we can settle down a bit more now.

(The girls with Grandma Ruth on Mother's Day)

All the appointments we have each week are starting to wear us down a bit...hopefully things will ease up soon. At last count we are currently meeting with a physical therapist, an occupational therapist, a pediatrician, an endocrinologist, a neurosurgeon, a pediatric opthalmologist and soon to be a pediatric psychologist and nutritionist. We don't have appointments with all of them each week, but it feels that way sometimes! We are lucky to love our doctors and Lizzie is receiving great care.

This last week we, as a family, did a 5K benefitting the Brain Injury Association of Utah (BIAU) - it was really inspiring and fun...Lizzie walked about a quarter mile and did good. It was fun to be part of something like that. I'll post pictures soon - life has been crazy and I haven't uploaded anything for a couple weeks.


Life continues to be so good despite the hard times and our little girl is making progress - we are so blessed.

P.S. To the anonymous card-sender: thank you - it was so perfect and received on a very hard day - we appreciate you!