Young Lexi and her Granma Connie need our prayers! Need a miracle!
- Alise- Evonposted 11 years ago
0 Thank you for your prayers, Dorsi! You are so sweet! We are doing our best and just loving Lexi while we still have her. I know from experience when my husband died that no one can ever be really prepared for death, even when we know it is coming. I just plan to take one day at a time and try to stay busy learning new things. I am only taking two classes this semester at school: Advanced Adobe Photoshop and Advanced Adobe Illustrator. See how you have touched me? You gave me something to hang on to that is going to make me have to get out of bed and go somewhere. Also something that I totally love doing. I am in awe of Photoshop and the world of creativity that is available through it. I have also learned Adobe InDesign and Adobe Dreamweaver. Someday, I plan to write an e-book and I am in the middle (still) of working on my website. It is coming along, but slowly. Doing this art also inspired me to go to a group paint class with some girls from my daughter's church twice. Here is my second painting ever....I painted my first picture in 1978 as a present for my grandfather. Now, I realize that he just was being a grandfather, but back then, I thought he really liked my artwork. He had everything I had ever done hung on his wall, lol.
Hey everyone....is anyone surprised that our little girl is still with us? She is just an incredible little girl. Her will to live is just amazing. I seriously thought that we were going to lose her today. Her oxygen levels went down and she was barely staying in the safe range on over four liters of pure oxygen (as opposed to the concentrator). She had dipped down into the seventies several times over the night last night and into the day. Her fingers had started to swell also. She was breathing very shallowly even with the vent and she was very pale. Kara started getting freaked out because she doesn't want her to suffocate. The doc had said that, because Lexi is on the ventilator, that eventually her heart would just stop. Kara took that quite literally. Kara said she might as well had taken her off the vent previously if she was just going to suffocate anyway. We had declined home Hospice care, because if we used them, we would have lost our nurses, who love Lexi so much. We couldn't do that to our nurses or to Lexi. However, none of our nurses have been Hospice trained and do not know the procedures that surround the death of a terminally ill patient. The ventilator also complicates things. Since Lexi can't communicate, it is very hard to know just what is going on and we have to rely on the heart rate to predict whether she is anxious or in pain. We so hope she is not! We've given a few doses of Morphine, but mostly the lowest dose -- a fourth of what she could have if we felt it necessary. As I said before, the doc says there are no pain receptors in the brain. Most brain cancer patients who feel pain do so because of the pressure of fluid build up as opposed to pain from the tumor. Lexi has had a shunt since her stroke two years ago and it pumps out the fluids so that is not an issue for her, thankfully. Her eyes are still terrible and we have had to tape them shut. It sounds worse than it is. I just taped her cheek to her forehead with enough tension that it made her eye shut all the way and today I got eyepads so we don't accidently pull Lexi's lashes out. Her eyes were blood red and you could tell that they were as irritated as they have ever been. That was with eye drops and ointment every half hour or so. Even taped, though they look a bit better, we are still have to remove the tape and put drops in every half hour or so. I think her eyes are just getting drier. I just took this picture of her. As you can see, she is still wearing her beanie. Her temp is close to normal now, but WITH two blankets still on and the hat. She normally just has on a diaper and she always kicked a blanket off. She never seemed to get cold. Now, of course, she can't fight us over it and without those blankets and the beanie, her temp would go too low again. Sorry that I practically wrote a book here. I guess I am trying to make up for lost time....here's our little girl:
- Alise- Evonposted 11 years ago0
Thanks. My rant is concluded. I even feel bad about it. But, hopefully, maybe some good will come of it. Stranger things have happened. And I just happen to know for a fact that there is at least one angel that frequents this site.
The above post seems to have disappeared. So posting it again. All is well.
Update: I see that my other post has returned. It's a miracle!
And just to confuse things further... Some days I do believe. And some days I don't.
I appreciate all the concern, but Paradigm's post did not upset me in the slightest. If we do not know why an educated and knowledgeable writer doesn't understand what the word "community" means, it is because community has gone by the wayside in this modern world of ours. When my father died in the middle of Tennessee, within hours, people were carrying in hams, pies, pots of green beans, paper plates and more. I remember how my nieces and nephews from the Philadelphia area were just astounded by all that. It showed me something too. Though I had lived in the same house for years and knew a few neighbors to say hello to, the lack of community in my neighborhood became glaring when I saw what a real community was that day. I became very wistful for those older days when I had lived in a community like that. A few years later, my husband died and not so much as a napkin was brought in by my "community." I've faced it. The closer we live to each other in the suburbs, the more alone we are. I've lived in my current neighborhood for three years. I don't even know the names of the people who live next door. No one comes out of their houses anymore except to get in their cars to leave. It is a sad commentary on modern life.
The definition of community is a group of people that live close by OR who come together in some way for a common interest. That doesn't make this group of commenters a religious one, but a CARING one. While many have sent up prayers for Lexi, there are some who have just sent out positive energy. We like that too, as negativity has no place here in this forum, or for that matter, in any of our lives. Unfortunately, we see negativity all too often and we all face it daily in some way or another.
I really have been lifted up by the love and support of my Hubpages community of writers, thinkers, prayers, and well-wishers. The best and the brightest live here, the most caring in this little forum. In my darkest hours, I have felt your love and concern and have known that I was not as alone as I felt here in this little "community" that I live in.
Habee is right, I have never asked for money and though there have been plenty of tough times over these past three years, I have never wanted my granddaughter to be turned into a commodity with football raffles, merchandise sales and all the other things that I've seen happen for other sick little children. I am proud that we've never had to do all those things, though, if we were in danger of losing the roof over Lexi's head, I am sure I would have changed my mind. We have been blessed to be able to support her ourselves without turning her into Lexi Inc.
Lexi is definitely in her final days, so this thread will end soon enough. I am still amazed by her and her will to live. Her eyes are doing beautifully right now and she seems very comfortable. She doesn't respond in any way to us, except she can still move her legs a bit. I would give anything for her to be able to say "NaNa" to me one more time, but I am afraid that is gone as she goes deeper and deeper into sleep. Here is a picture of her this morning:
Hi Connie. Lexi is beautiful, as always.
You must be very proud that this thread has been running for years ... just shows what a brilliant job Lexi's done to stay with those she loves for as long as is humanly possible. I can't help but smile every time you post a photo, Connie. What extraordinary strength she has.
Personally I hope this thread stays up forever. Those of us who took the time to read every post from beginning to end have learned a lot about one amazing little girl and her fabulous family. I suspect we've also learned some interesting things about ourselves and each other.
We'll keep coming back to support and encourage you, Connie, for as long as you need us.You just described how I was feeling yesterday. I was pretty ticked-off with God and people in general myself. And I unfairly took it out on this thread. However, I am now back to being the kinder, gentler paradigmsearch.
No Hubbie Award for paradigmsearch this year...
- Alise- Evonposted 11 years ago0
Okay, I just read your request for suggestions on how to make Lexi's photo show 'special' for her. Here's my thoughts to start the think-tank process ...
You obviously have many beautiful photos of Lexi. Would it help to include little 'quotes' from the many people she has touched during her short lifetime ... and how far away we all live? You could either add the individual quote in a little box on individual photos of Lexi, or intersperse the photos with text graphics that show what we say and where we are.
Lexi obviously has friends and family in Florida and Ohio ... but she also has a lot of other friends spread across the world.
My quote would read:
Your beauty and strength knows no boundaries, Lexi.
LTM, Australia
May the truth be known, Connie, it is probably way too much work. Maybe someone has a better idea. I will try and think of another idea but that's the best I can offer right now.I love these. Thank you very much! There has been no change, except Lexi's eyes have drastically improved. Her temperature is still fluctuating between 95 and 100. Occasionally, we have to raise her oxygen level for a short period quite high, but mostly, she is still on the very minimum. She is just something, isn't she? Every morning when I go in, I say, "Oh, thank you for giving me one more day."
Hi Connie. So Lexi is still choosing her own path in her own time. That's great. Are you still in touch with her doctors? They must be in awe of her strength. I know I am!
Lexi is not going to any doctors at this point, but we are keeping her comfortable. Her fabulous pediatrician left the practice so we aren't doing anything there. Fortunately, her neuro-oncologist is staying in contact and if we need something, she is right on it. For instance, Lexi has a recurring ear infection and the doc ordered the ear drops. At the last appointment -- whenever that was -- that she said there was nothing more she could do for Lexi, we asked how long she had. She replied that, maybe with another patient, she could give an estimate, but Lexi was already way out of the ballpark and had, at that point, been with us far longer than anyone ever thought possible. She amazes us all.
Here's her pic today. Yes, they all look the same these days...poor baby, but I still try to get a picture every day.
- Alise- Evonposted 11 years ago0
Hi all. Your prayers are working. Lexi is still going strong. I guess for Halloween, we should have made her the Energizer Bunny. However, I just now thought of it, so it is too late. Anyway, she was quite adorable as this:
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