Fatigue

We are tired. All of us.

Our life like everyone else's is crazy busy right now. I don't feel like we've ever recovered from the lack of sleep in the hospital. We are more emotionally fatigued now I guess.

Lizzie is doing great. She is walking well, can go up and down stairs unassisted, get up to the table by herself and a few other things she couldn't do when we first got home. She still needs help getting dressed and is still very easily agitated. We never know what's going to set her off or how she will do in certain situations so we just are prepared to leave anywhere pretty quickly if we need to.

To look at her you would never know she had surgery. Her scars are mostly covered by her hair, she walks okay and her face is almost back to normal - she still has some paralysis on her left side, but it's not that noticeable - we are working on getting that back. We chopped her hair too - it was a source of extreme stress to have her hair done so off it went and it was long enough to donate to locks of love so we were excited about that!

She is working in therapy twice a week and is tired of it. She gets so tired so easily and gets really frustrated at therapy because they push her to work hard - which is what they should do. She ended in tears with one of her therapy sessions this week and told me she doesn't want to go back, but we will :)

We are feeling more normal every day, so that's good. The only times I have broken down this week is when I've seen pics of the "before" Lizzie - guilt reined it's ugly head this week too. I just kept thinking about all the warning signs and wondered why I didn't figure this out before now. It's quite ironic...about 6 months before she was diagnosed, I googled "brain tumor symptoms in kids." They had me take this little quiz to see if Lizzie's symptoms fit the criteria and she only fit about 3 out of 10 so I figured it couldn't be that and didn't feel directed to pursue that line of thinking.

(A "before" pic taken in St. George a month before she was diagnosed - she loved this trip!)

The symptoms never seemed to occur simultaneously, so she would complain about her eyes hurting one day, the next day she'd have a headache and a few days after that she'd vomit...it just never seemed to make any sense, but now in hindsight it does and it makes me very sad. I used to think she was a hypochondriac because the pediatrician, the opthalmologist, the naturopath, and a myriad of other physicians could never find anything wrong and the fact that I thought it was all in her head (no pun intended) makes me sad too - I guess one of the biggest things I've learned is that our children are wiser than we often think and that we would do well to truly listen to them.

One experience in particular really bugs me. When Lizzie was 2 she fell out of our bed and hit her head on the wood sideboard. She immediately started violently throwing up and couldn't stop. I took her to the ER and by then her vomiting was slowing down. They checked her out and said if symptoms continued they would do a CT scan - oh how I wish we would have had a CT scan then. It makes me so sad to think that we could have found out about this 3 years earlier - it would have saved her 3 years of suffering. But we learned a lot in those years and were definitely prepared to find out about this when we did - the Lord's timing is perfect - that we know for sure.

Lizzie went to school this week on two days for a couple hours each time. She tires so easily, but seemed to like going. She didn't want to go on the third day we had planned because she was so agitated and tired that day. On two days a week we have a tutor from the school district come in and work with her - that is working great - Lizzie really likes her. We don't know what to do with school next year - we are considering holding her back and having her repeat kindergarten because I don't think she'll be ready physically or emotionally to go to a whole day of school, but I guess we'll just see.

(Playing on the tramp with the kids - Calli is still acting just like her hair looks...wild and crazy)

Thanks for everyone who has donated to our Primary Children's project - we are going tomorrow for an appointment and we'll take down what we've collected so far and then we'll go again on Saturday for another appointment, so if you want to donate stuff, we would love it! We are taking down tons of drinks, snacks and about 25 bingo prizes for the children, so we are pumped - thanks for everyone's generosity - we have been blown away yet again for how generous people are!