One in a million...those are the odds of getting a tumor like Lizzie got, so at least we can say we're one in a million in something :)
Today has been good. Her fever is reducing, her heartrate is down to the 130s...still high, but much better. We saw the neurosurgeon and he is concerned with her lethargy and ordered a stop to her physical therapy at this time. He is concerned with her seizure risks, and just wants her to rest and recover at this time - we're okay with that.
A few people have asked some technical ?s about Lizzie's tumor - it is called a Craniopharyngioma - knock yourself out with google if you want to research it - it's pretty boring reading, but it does explain so much about her unexplained weight gain, thirst, frequent trips to the bathroom, vomiting and headaches.
It is also very depressing reading. I hate reading odds...they just don't leave much room for miracles. Her odds of recovering are great. Her odds at getting a recurrent tumor are low. The thing that has me down right now is that we thought that once the tumor was out she would start growing and developing normally. I have learned that a lot of these kids with these tumors removed also have their hunger cues removed as well and so they don't ever feel full. If this happens, they and their families suffer a lot with having to lock up food...it sounds like their whole world revolves around food and they struggle heavily with obesity.
This makes me sad. I feel like Liz has already suffered with teasing and other issues at school. The Lord knows what we and she can handle, so I'm just putting that in His hands right now, but I would appreciate your prayers that her thirst and hunger cues will remain intact and functioning.
We continue to be amazed at the love we are receiving. I told a couple people today that I just feel like I'm in some sort of utopia with all the showers of love and kindness we are receiving. Thank you for showing us how to comfort others in times of need - we can't wait to start paying it forward.
Subscribe to:
Post Comments (Atom)
5 comments:
I'm so glad her fever and heart rate are down! That is great news.
I might understand a little about the food issue. Our whole house is on lockdown. The fridge, freezer, pantry. But on a up note, it cuts down on my snacking, too. ;)
Hang in there. We love you!!!
So happy to hear that Lizzy's heart rate and temp. is coming down :) I knew I was witnessing a miracle for the last week. And we continue to pray for more miracles. Your little girl has brought a community closer in faith and we are still praying for all of you... Love you
Wade julie n boys :)
I am hoping to come see you soon. We ended up having strep throat here and I had to stay away. We never stop thinking of you guys.
It does sound like a good news day.
Love ya.
We appreciate your updates - your going to be medical doctors with as much knowledge that you are getting! You have great help there and concern for Lizzie. Glad that you were able to go home for a day to be with Spencer and his sister. Our prayers are with you and your family. We love you! Lynn & Cheryl
Thinking of you and your family every day. Laughing & Crying along with you. I agree with Julie about miracles...your family has definately been experiencing so many. Love and hugs to you all....Wendy & family
Post a Comment