Young Lexi and her Granma Connie need our prayers! Need a miracle!
Here is a miracle for all of Lexi's faithful followers! A little while ago, she sat up for over a minute by herself! As she was wobbling, you could see her putting her hands out for balance and trying to correct herself. She has also been rolling around in the floor, turning over on her tummy, scooting forward a few inches and trying her best to get on her knees! She has been doing that for a week or so. We are having trouble keeping her in her chair for her two hour chemo ingestion (by G-tube...) because she does not want to sit in the chair. She wants on the ground to move. We have a good size gymnast's mat, and we put her on that and she just works and works at trying to crawl. These are major advancements, but the sitting....well, that is really big. After the first surgery, from the time that she sat the first time, the next thing we knew, she was sitting in the floor playing toys. Here is the picture of her sitting tonight.
It has been a long time since I've given an update on Lexi. She has been totally off the ventilator for over a month and doing very well breathing on her own with just a bit of oxygen to aid her. She also has been continuing on with her own personal physical therapy program. She can now sit up by herself! She gets on her hands and knees and angles around until she is sitting. She still doesn't have the balance that is necessary for regular sitting, but she is working on it. Since that is something that can be worked on, I complained to the state about Lexi being denied physical therapy through her insurance company. Within two weeks, she was approved. She is now getting physical therapy three times a week, so we hope to see more improvement. She also has been moving along in other areas. You may remember that she loved her flavored "lipsticks" before her stroke. She now takes one and "applies" it to her lips! She is also rolling a ball with her therapist and actually reaching for it and pushing it. As always, she is just an amazing child. She is still on chemo, but the tumor has quit shrinking. That is not so good news, but the doc says that doesn't mean that it is not continuing to kill cancer cells. We are still hoping that, at some point, that she can have surgery and have a real chance at life. She is a beautiful little girl who has been fortunate to have loving friends like all of you. We do believe that your prayers, positive thoughts and wishes, have been beneficial in Lexi getting to this point. Below are a couple of pictures, one showing Lexi putting on her lipstick and the other showing Lexi playing with the ball. She has come a long way.
To all of you that continue to care about Lexi, I am sorry that I haven't updated lately, but there hasn't been much going on. Lexi has continued to show signs of improvement cognitively. She now will reach her arms around for a hug and pull you down for a kiss. That is priceless. She is also sitting up better, still trying to pull up on the sofa, but hasn't mastered that yet. She is a trooper though and keeps on trying.
However, I write to today to bring you some FABULOUS NEWS!!!
We were quite worried two months ago when it appeared that Lexi's tumor had started to grow again -- just a fraction of a fraction of a millimeter, but still. You can imagine how anxiously we awaited this latest MRI to see what was happening. Lexi's tumor is starting to show signs of necrosis in the MIDDLE of the tumor as well as fluid holes in the tumor, meaning (according to the doctor) that parts of the tumor have DIED. I have never given up hope and neither has Lexi who continues to show us everyday that indomitable spirit to live. Please continue to pray for her and/or send out those positive vibes into the universe. Lexi is not out of the woods, but this is the best news yet!!!
She has already received miracle after miracle as most of you know that in January of 2011, we were told she had a "zero chance of survival" and less than a year to live. In early March of 2011, after her tumor bled, which was called a brain stem stroke, we were pressured to pull the plug because they said she was in a "persistent vegetative state" from which she would never recover. She went on the ventilator in July of 2011, but came off of it a year later. She continues to breathe on her own with just 1/2 liter of oxygen to help. In Feb. 2012, she was called "quadriplegic" by one of her doctors, but yet she can now sit up, get on her hands and knees, crawl and pull up a bit on the sofa. If she had the balance needed, she could do that, plus stand. She does have the strength and muscles for it.
All of those are miracles in my mind as is Lexi's will to live. Here is a picture taken in December of Lexi during a therapy session. She doesn't sit on this bench on her own of course, but it does show how far she has come!
Dar, your words -- and those of everyone else who have been kind enough to post -- give me some comfort. I know that you are speaking from your heart and from your knowledge and you always know just the right words. There is a picture that I have of Lexi that I may have even posted here. She is coming home from the hospital after her long hospitization for surgery back in early 2010 and then for rehab, about 2 1/2 months total. She had gone from not being able to grasp an object, not being able to sit or stand, them thinking she was blind and more. She was going home! She was so happy, she was clapping. I look at that picture and I see the trust in her eyes that she had -- expecting us to take care of her. Yes, we did try, but we trusted the wrong people. We were still under the impression that doctors were God-like, that they knew everything, that we should look to them for the answers (like they told us to do), that she didn't need chemo, that radiation was out of the question and that they were going to keep a very close eye on Lexi's MRIs. She has fought so hard and yes, though I would give my soul for her to live, I know it just doesn't work that way. I have begged God for that as well as that miracle and neither have been forthcoming. Thank you for trying to make me feel better. I do know that no one could love my sweet granddaughter any more than I do, but it doesn't make it any easier to lose her. I will be lost without her, there is no doubt.
Thanks to all who have posted and who are praying for Lexi. She went back on the old chemo last night for one last ditch effort, thought the doctor doesn't think it will help this time around. We definitely do not want her to suffer, but we are going to pray for that miracle until Lexi takes her last breath. Here is that picture that I was talking about. It was taken in May of 2010.
and here is one taken just a few days ago. She is still our beautiful little baby girl.
Thanks, Zsuzsy, and my heartfelt thanks to everyone who posted such kind and loving thoughts for Lexi and our family here. I have often said that I am amazed by the outpouring of love and generosity here. It is especially significant to me when Lexi has another grandma who, a year ago, moved from Mississippi to a town 30 miles north of us, and has yet to come to see her. The day after we found out that Lexi's tumor had grown so big, this woman posted on her Facebook page about it being her dog's 14th birthday and that he liked cupcakes! She is always going on about being a "Christian" and talking the talk, if you know what I mean. The grandma's parents -- Lexi's great-grandparents -- live about 15 miles from us. They are still active and go to places like Las Vegas, but have never come to see her. In the past year, she (grandma) has posted such things as "so lucky I have my parents so close to me!"
I had the best grandmother in the world. Even when I was much younger than Lexi is now, she was constantly talking about having "goodness" in my heart. It was a little easier when I was a child to turn away and to forgive and forget. All those lessons get thrown out the window whenever I think of this situation and that "devil" my grandmother always told me about worms his way in. I admit that I have thought more than once about "outing" her on Lexi's Facebook page. The lady has a lot of friends on there who follow Lexi.
Besides the lessons that I learned by my own grandmother's side, having people like you, who love Lexi from afar, has given me the strenghth to keep that "devil" at bay. She is the poorer for not having known Lexi. Yet, I am only human and as the clock ticks, I admit it gets harder to do. I thank you all so much for your support. In the light of Lexi's own family members, your loving light shines like a beacon. Thank you, Zsuzsy, and thanks to you all.
Lexi is holding steady. She is moving her arms a bit more, but not able to turn over or readjust her body at all. She is still being a bit more vocal, letting us know when something hurts. She is getting a tiny, tiny bit of morphine twice a day because of that. Before this latest development, Lexi would not let us hold her and hasn't for a long time. She just wanted to be on the floor on her mat where she could move about if she wanted to. Now, she wants to be held and we are trying to take turns so that she gets held much of the time, especially in the evenings. Here is a picture taken yesterday of Lexi and her mommy:
- Alise- Evonposted 12 years ago
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