Young Lexi and her Granma Connie need our prayers! Need a miracle!
- Alise- Evonposted 10 years ago
0 This month is very hard for us for many reasons. Lexi -- Alexis Noelle -- is a December baby. She just passed her sixth birthday on December 5. To watch her lay there and not be able to enjoy it for the past three years is extremely hard. She can't even sit up but we laid with her and snuggled with her all day. She lost her first tooth, a bottom one, on her birthday too. One of her nurses pulled it because we were afraid it would come out and she would swallow it. Now, there is another one loose on the top.
I had a moment last week at Toys R Us. It wasn't just about Lexi, though it started out like that when I saw the cutest little princess dresses to play dress-up in. She would have worn hers out! As a two year old at Walmart, instead of crying for toys, she was saying "Shoes! Shoes!" She has always been our little diva princess.
After I worked through the heartache of the princess dresses, I just got very sad about all the little kids who weren't able to have toys this year, whether sick or just having parents who can't or won't do for their children. It was a bit overwhelming.
Lexi and I have been doing a lot of snuggling and she is STILL communicating with me in her own way. She will make little noises in her throat when I come around and if I lay beside her, she will arch towards me. How amazing is that for a little girl who has cheated death over and over?
We haven't had an MRI since last June and I guess we won't be having any more though I would love to see what is happening in there. She is doing very well under the circumstances. She takes Tylenol and Prilosec and a few breathing treatments. She is not on heavy duty meds and though some days she breathes better than others, she was doing very well with the lowest amount of oxygen that our machine delivers.
My daughter has been feeling very bad about keeping her alive on the vent, but we've been through that before. She has a "Do not Resuscitate" order in place but she was already back on the ventilator. She was given the six weeks last March or so and though she doesn't see the doctor any more, the doctor stays in touch with my daughter. Yes, she is a bit amazed at Lexi's still being with us considering that she said in June that the tumor had all but taken over Lexi's brain.
Still, as I said, I feel Lexi in there and I know, without a doubt, that she know who I am. She responds to me differently than the others. Of course, I have been taking care of her since she was six months old. I thank God all the time that I decided to take a year or two off to watch my grandkids while they were little and couldn't talk. I read too many horror stories! Otherwise, I would have missed having this strong bond with her. People kept telling me to get a life, but I do not regret one moment of it then or since Lexi's illness. I just regret that she hasn't been able to enjoy her little life like she should have.
Here is a picture of her on her birthday:
- Alise- Evonposted 10 years ago0
Sorry everyone. I hadn't realized that it has been so long since I posted. There isn't really anything new to say. Lexi is still hanging in there and, as far as we can tell, hasn't deteriorated in any way. She hasn't had an MRI since the last one in May or June right before the doctor said it was time to stop all treatments. They don't want to give her any more MRIs because she has to be sedated for them and that could make things worse, I guess. My argument to that is that she doesn't move. She does cough sometimes so I guess I get it but it is very frustrating not knowing what is going on and she can't tell us. She moves sometimes to lean in to me to let me know she wants me to cuddle with her. That is the only way I know she still knows me and that her condition doesn't seem to have changed much.
Though she occasionally has to be on a higher level of oxygen, she is pretty stable there as well. We are still keeping her bundled up as her temperature still fluctuates a little too much.
We are spending a lot of time with her. We changed her nursing hours so that we had more quality time with her and cancelled a couple of days of nursing. I also work one overnight shift with her a week instead of having a nurse. We are starting a few shifts back up now as my daughter, Kara, started working with a diet supplement company called IT WORKS. It is one of those party type businesses that you go up the ladder by getting others to join under you. She can also sell through a web site as well, but they seem more intent on their people getting more people than actually selling the stuff...It is helping to keep her mind off of things so I have really encouraged her. She hasn't made any money yet, but she is all excited about it. She is getting out and meeting people and that can only be good for her.
I also have started back to work. I have been a real estate agent since 2003. I never really left my office but took time off (for several years...) and am trying to make some money before we go down the tubes. I've sold one condo (back in November) and have an offer on the table now. I also am trying to work with an old associate who is doing pretty well right now so that I can get back to business. Kara and I do need to make money but we also need to get back to work for ourselves for when Lexi goes.
I have really been writing some articles in my head and hoping to get going with that again. Do any of you do that? I was just being pulled in a lot of different directions with Lexi, doing my share and more with her and also dealing with my other grandchildren. My other daughter finally moved out with my 8 and 4 year old grandsons. Though I miss them, it was just too chaotic around here and I am more and more feeling the need for peace and the ability to do what I want to do. It sounds selfish but it is really hard to have creative goals when kids are running around the house. Now I have a little time to myself and, of course, still haven't done anything but those articles in my head....
Thanks to you all for sticking with us. As always, I appreciate you and you will never know the comfort you all have given me, especially in those dark days right after Lexi's stroke. Back then, I felt pretty alone and you were all I had to keep me going. Words can not express how much it meant to me.
This photo was taken overnight last Friday when it was just me and her hanging out together. I will always cherish those moments.
- Alise- Evonposted 10 years ago0
Hi Connie. Are they serious about suggesting sedation during an MRI? I know an MRI can be noisy, but is that likely to stimulate Lexi enough to move?
Like you, I'm certainly wondering what's going on inside her body. Seems the doctor's prognosis was far from the mark. Perhaps it might be worth considering the sedation just to gather some facts, but I'm a long way removed and it is easy to ponder from a distance.
Hope you get some good sales through quickly. I fully appreciate that looking after Lexi comes with a price. I greatly admire your efforts.
Hi all...thanks for hanging in there with us. Things are pretty much the same as the last time we checked in. Lexi is doing very well under the circumstances. She is still having trouble regulating her temperature so she now has quite the hat and blanket collection from people sending them to her. She recently got several more from the Level Green Church in Keavey, Kentucky. Keavey holds a special place in my heart as the final resting place for my husband in Locust Grove Cemetery. It was an emotional gift.
Lexi has been needing quite a bit more oxygen than before so that is different. Can you believe that the medical supply company, Univita, who supplies the oxygen actually instituted a limit on how many oxygen tanks can be replaced at once? Lexi has a machine but she also has tanks for emergencies and for times when the manufactured oxygen just doesn't get it for her. She has had ten tanks for over two years for situations. Several days ago, she went through two tanks just between 9 am and Noon. When we reordered, we had nine empties and they brought us FOUR -- their limit. As you can imagine, that didn't work for me, not only for Lexi who has people to stand up for her but also because of all the other people out there who might be going without enough, worried about trying to conserve until they could get a delivery on Monday (they don't deliver on the weekends...) Needless to say, they called to apologize and let us know we were scheduled for a Saturday delivery after a complaint to the state Agency for Healthcare Administration. Hoping no one else has suffered this weekend due to a silly rule where some warehouse manager is deciding how much oxygen the users in Florida need on a daily basis instead of medical professionals. It is seriously a never ending battle! I never cease to be amazed by how incompetent so many people are who work in various capacities in the medical industry. Of course, we've always thanked God for the many other people who are dedicated professionals and who have given Lexi excellent care. We try not to lose sight of that in our weariness over the fight.
Lexi got a new puppy! Well...it belongs to both Lexi and her brother. Mystery is a rescued puppy whose origins and lineage we did not know when we got her. Because of her mysterious past, we named her Mystery. Now we know a little more. She is a little southern belle from Walker County, Alabama, that was sent to the Suncoast Animal Rescue here in Tampa Bay. The vet thinks she is part Lab and part terrier. She is pretty good with Lexi and likes to lay with her. Of course, we have to watch closely as she has already chewed a cord on one of Lexi's machines...here are a few pictures of Lexi with her new pup:
A puppy! That's brilliant! I didn't realize Lexi has a brother. What's his name? Please send him my regards from the land down under.
- Alise- Evonposted 10 years ago0
My heart is breaking as I write to let you all know that my darling Lexi has passed away this evening, March 9, 2014, at 11:23 pm. What a coincidence that she passed away on the four year anniversary of her brain tumor diagnosis that occurred on March 9, 2010. There was a time when I felt all alone in my grief over Lexi and her illness, especially during those long nights that Lexi and I spent at the hospital during her many stays. I was so lost and afraid for her. Reading the comments here gave me such great comfort, especially those from far away since I knew we were covering the globe with prayer and good vibes. Thank you all for being there for me and Lexi. Here is a picture from March 6 that I took. She was just breath taking.
- Alise- Evonposted 10 years ago0
Perfect. Lexi deserved that tiara.
Thank you so much! It means a lot to me that Lexi is not forgotten. I miss her more than words can ever express. I really loved taking care of her. I am now trying to take care of myself. I am on a self-improvement plan that includes walking and dieting so that I can be healthy. There were many times during Lexi's illness that I just wanted to go with her but I did promise myself and Lexi that when she was gone, I would try to live. By that, I don't mean I am or was suicidal but to take advantage of my opportunities. I am a Cancer the Crab and have strong tendencies to just crawl into my shell and hide from the world. I have to force myself to get out. On Lexi's FB page, I have been posting a lot of pictures of her and talking about them. That helps a little but as a mother, I am sure you know we are devastated and always will be. We are hoping to start a charity called Lexi's Friends. Her mother wants to be able to help other children by providing interim physical and speech therapy and some supplies that aren't covered by insurance -- like the $50 in eye drops we needed weekly since Lexi couldn't blink. I recently joined a FB group of other parents whose children have ependymoma. I can't get involved with any particular child's illness right now as my emotions are still too fragile, but I do hope that some of our experiences help others be able to make the right decisions for their children. We do want Lexi to be remembered and do not want her to have lived in vain. If we can help others, that is not a bad legacy for our baby girl. This picture is Lexi on her last birthday, last December 5, 2013. She was a princess and this is how I picture her now. She was buried in a beautiful white dress and, of course, wearing a tiara. She was a little princess to the end.
- Alise- Evonposted 9 years ago0
Hi Connie. I do hope you'll put a link here to the charity when it is set up. One of Lexi's friends in Australia would be happy to make a donation to honour her.
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