Young Lexi and her Granma Connie need our prayers! Need a miracle!

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   Connie Smithposted 13 years ago

   Lexi is out of the hospital and doing well, considering the circumstances.  She hasn't been all that active the last few days, but she was diagnosed with that same virus as she had in September: the adenovirus.  Fortunately, she does not have pneumonia, which she did the last time, but lots of secretions continuing. 
   
   We bought her a new stroller a few weeks ago from "Let's Go Strolling" in Tampa.  It is actually a jogging stroller. We were looking for something to give her legs support, that worked for a bigger kid and was easy to push.  The company sent special longer restraints after the first ones were a bit tight.  This stroller is great as it allows us to bring her out with the family in a more upright position, where she can see, if possible -- due to the harness type of restraint.  I have been very vocal about getting her out of the bedroom and out around the family. 
   
   She had her EEG and the docs say Lexi has had some hearing loss.  Again, they say she cannot see.  However, not only did they say that last year -- and it wasn't true -- one of the nurse's said that the test is not a true indicator of blindness.  It can be wrong.  Still, I am a bit worried, as both of her eyes cross most of the time, whereas before, one was a bit off.  On both, it is much worse when she is sleepy.
   
   Here is a picture of Lexi in her new stroller.  She got to actually go for a walk with her mommy and her big brother, Christopher.     
   

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      Woman Of Courageposted 12 years agoin reply to this

      Wow, I am so glad to see Lexi enjoying outside with her big brother

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   Zsuzsy Beeposted 13 years ago

   Connie, thanks so much for the update. How great to see that Lexi can get out and about now.
   Keeping you all in my thoughts and prayers.
   Take care

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   Patty Inglish, MSposted 13 years ago

   Getting outside is a big step in activity, even passive activity - and the air (fresh, I hope) will do her good in fighting off repeat infections.
   
   And let us not accept a bad report. Our report is from the Lord.
   
   Cheers and Amen!
   
   Patty

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      Woman Of Courageposted 12 years agoin reply to this

      Amen.

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   Jen's Solitudeposted 13 years ago

   What a great idea to get a stroller that allows her to get out and about! I think we will be able to keep our own charts on how she is doing and get a more realistic view of how she is progressing as time passes. Like you mentioned, right now her eyes are crossed, let us see if they improve with time. Maybe the virus is playing a part in her recovery since her body is trying to fight the infection and deal with the other problems as well. As the infection heals so may the eye problem.
   
   Being around family and participating in everyday activities sounds like a great plan to me. I applaud your efforts my friend, keep up the good work! Thanks for the picture and the update!

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   Zsuzsy Beeposted 13 years ago

   Keeping you all in my thoughts and prayers.

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   Zsuzsy Beeposted 12 years ago

   Hope everything is going smoothly.
              in my thoughts and prayers always

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   Connie Smithposted 12 years ago

   Hi all.  So sorry I haven't posted any news of Lexi for so long.  We have been busy trying to get help with nursing, physical therapy, speech therapy, supplies....the list is endless, and then on top of that, Lexi requires a great deal of attention, of course. 
   
   The good news is that we finally got approved for 4 hours of nursing care a day.  We had to fight for it and the only way we got it was by contacting a wonderful lady with the Florida state Agency for Healthcare Administration.  Therapy is crucial to the recovery of any stroke patient and she should have been getting physical therapy for the last couple of months. Fortunately, we have finally gotten approval for a few visits. Just by me working with her, her neck is strenghtening and she is able to hold her head up by herself for a minute or so, but I worry that I will hurt her.  I think she will show a great deal of improvement if they give her additional visits with a professional.
   
   The nurse this morning was witness to Lexi opening up her mouth when I told her to -- a very important advancement to assess consciousness.  I could never get her to do it when someone was looking before, lol.  I have continued to brush her teeth every morning (whenever I was able to get at her, so it has remained a most familiar routine for her.
   
   She had a real EEG (the other was to access vision and hearing). Her brain is "slow" but the neurologist (our new one)is not ready to give up on her.  He is a very knowledgeable older doctor, Indian by birth, who takes his time with each patient and you can tell he likes to educate the parents. In the only two visits we've had (about 20 min while looking at the EEG while it was in progress), he has spent close to two hours with her.  He is not ready to give up on her, so we are on the same page.
   
   Lexi has another MRI scheduled for Tuesday so we are anxiously awaiting that to see what is going on in that little baby head.  In the meantime, here are a few pictures.
   
   This first picture is Lexi with her prayer shawl, sent to her from the Pine Grove Missionary Baptist Church in Pennington Gap, Virginia.  Each lady in the Prayer Shawl Ministry prays for Lexi over the shawl as she does part of the crocheting, then passes it on. According to the card tied to the shawl, they "ask the Lord to give you many blessings of healing, strength, peace and courage."  It is very beautiful and the love and prayers woven into those threads makes it very special to us. 
   
   
   
   This picture was taken yesterday.  It is Lexi during her physical therapy session.  Though not quite as advanced, it reminds me of a picture I took last year of Lexi in rehab....
   
   
   
   What I love about this picture is that it shows her determination.  You can see it on her face.  It was taken last year and is the first time that they had stood her up to walk.
   
   
   
   This is the nurse and my other daughter, Ashley, who was learning how to change the trach.  Everyone who takes care of Lexi has to know how to do it. 
   
   

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      Woman Of Courageposted 12 years agoin reply to this

      Hi Connie, I am very happy Lexi is getting 4 hours of nursing care a day. It's such a blessing. I hope you had a pleasant Mother's Day.

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   rebekahELLEposted 12 years ago

   Thanks Connie for updating. I'm relieved to see she is responding, and that you have a doctor who will not give up. That's great news about finally getting daily care. It's sad to hear you were not receiving before what should have been offered.
   I'm sure having a nurse in for 4 hours daily will help a lot.
   
   You are certainly a wonderful example of what it takes to be a mother (and grandmother)! I hope you all enjoy Mother's Day.
   
   Best wishes and many warm thoughts coming your way.
   
   
   

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      Connie Smithposted 12 years agoin reply to this

      So sweet, Rebecca.  I love the flowers and the nice compliment.  Hope you had a great Mother's Day.

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   Zsuzsy Beeposted 12 years ago

   Connie what awesome news. Thank you so much for taking time out of your so busy schedule for this fabulous update.
   Lexi looks like a sweet little sleeping beauty in her pink cloud. Keeping you all in my thoughts and prayers.

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      Connie Smithposted 12 years agoin reply to this

      Thank you, Zsuzsy.  So very kind of you to start this thread and continue to care about Lexi.  She is such a fighter, so I just hope that she can keep up the strength to get better.  Keep your fingers crossed that her MRI is good news on Tuesday.

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    Jen's Solitudeposted 12 years ago

    What a relief to see that you have updated us. I was starting to get concerned, but totally understand why you can't update as often as before. Thanks for the pictures of Lexi and my favorite update was that she opened her mouth when you asked her to and someone else was present to see it! (smile)  Your new neuro sounds terrific. I think we learn so much when we find doctors willing to take the time to explain details to us. My neuro does that so I know how important and helpful it is.
    
    The nurse and the physical therapy is also good news. I wish you didn't have to work so hard for these services, but I'm also glad you have it in you to do what it takes to get Lexi the best care possible.
    
    Keep up the good work and positive attitude it surely seems to me that she is slowly improving which is reason to rejoice!

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    Patty Inglish, MSposted 12 years ago

    Thsi is more like now - 4 hours nrusing care a day. Sorry you had to fight so hard to get it. Lexi looks positve to me, so keep on pushing for healing. Best thougths and prayers continue. A child deserves every chance to live.

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    Connie Smithposted 12 years ago

    Thanks, girls.  I have a heavy heart right now after hearing the MRI results.  We haven't seen the pathology report, but saw the actual MRI.  It appears to the doc that the area around the brain stem looks much better, but that is what we need to see the path report for to know more. The doc says that the pathologist who does the report is better able to determine that part.  The bad news is that the tumor has grown 30-40% since the February MRI.  Unfortunately, one doesn't have to be an expert to see the difference in that. It is obviously very agressive and the doctor just doesn't think that anything at all can be done.  Still, she already ordered the discs and will send that, along with the report, to St. Jude so that they can take a look at it.  I will update when we get the actual report.  Keep praying.  Lexi needs that miracle.

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       Patty Inglish, MSposted 12 years agoin reply to this

       Exasperating, but it's not over. I want to grab that tumor out by the roots and stomp it until it is liquified and then evaporate it with a death ray. So, some doctor watching over Lexi should yank it out, burn it up, pour Holy Water over her head, apply a prayer cloth, and do whatever else is necessary. Best wishes on the long road.

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          Dorsiposted 12 years agoin reply to this

          I agree! I want to do the same.
          
          Prayers going out to little Lexi.

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    Zsuzsy Beeposted 12 years ago

    Sending you all giant bear-hugs. Stay strong. Keeping you all in my thoughts and prayers daily.

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    Lisa HWposted 12 years ago

    ...and yet more hugs, wishes, hopes, prayers from here, Connie.  A day hasn't gone by since this thread first showed up that I haven't thought about Lexi, you, and her mother.

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    habeeposted 12 years ago

    Connie, I just sent up another teary-eyed prayer. I can't imagine what you and your family are enduring.

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    schoolgirlforrealposted 12 years ago

    prayers being sent!

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    Connie Smithposted 12 years ago

    I am constantly amazed by the love and concern you all have shown for Lexi.  I seriously have so many relatives that have never even inquired.  So strange, don't you think?  Trying to do everything humanly possible, we have now started Reiki.  Her speech therapist performs Reiki, so we are trying it.  We also have taken her to an acupuncturist who treats strokes. She is having 5 sessions.  We are going to organic formula and trying our best to get her some physical therapy.  The company who our insurance company hired doesn't have anyone available.  In the two sessions that she had before, she did so well and is actually moving so much more, trying to roll over and holds her head up so much better.  We need some results here -- and fast.  Monday, we are going to the ENT to try to get that trach removed.  Hope it is possible.  We want to see if she can talk.  Sometimes, it seem like she is trying and she did say no that one time.  We need to know!!!  Our 12 hour nursing shift starts tomorrow....I won't know what to do with myself.  I'm afraid to start school again because I don't know what is going on.

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       SomewayOuttaHereposted 12 years agoin reply to this

       ...glad to hear the updates on little Lexi..
       
       after reading your comments about 'you'...that's a tough call...what to do?...it's difficult when your focus has been on Lexi and your surreal world...
       
       ease yourself into some breaks for yourself since there will be a nurse for 12 hours each day I assume...it's hard...but take one step at a time forward for you...it'll help you gather your strength/energy and relieve some of the stress...because no doubt you have been under tremendous stress that you've probably become accustomed to unfortunately...it's easy for me to say this when i'm not in the middle of your world...
       
       my words may not make complete sense to you right now...i'm trying to plant a small seed for you and hope you recognize it...but trust me on this...take those little breaks no matter how difficult it is...and just focus on that small step you take 'today'...not tomorrow or next week or next month...that's too far ahead and difficult to see....just the now

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    Zsuzsy Beeposted 12 years ago

    Connie still praying for that miracle. I believe good things come from Reiki and am totally for everything organic.
    It will be so nice to have a few moments that you have just for you. Hope you will be able to get a bit of rest in then.
    
    Tons of on-going good thoughts and prayers for you and the rest of your family.
    
    Thanks for taking time out of your busy-busy day to keep us updated.
    
    Best wishes my dear, take care

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    Jen's Solitudeposted 12 years ago

    I will be looking for your update Monday. We will be in Delaware, but I will have my laptop so will still be able to keep up with this thread. Just wanted you to know I am thinking about you all.

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    Zsuzsy Beeposted 12 years ago

    Keeping you in my thoughts and prayers.

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    jill of alltradesposted 12 years ago

    Connie,
    I have not been very active in HP lately so I only saw this thread now. I am thankful to read whatever small improvement there is.
    Anyway, my heartfelt prayers go to Lexi and to you too!
    God bless!

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    Connie Smithposted 12 years ago

    Sorry to keep you waiting for that update.  I wrote a long paragraph last night and then, poof, it disappeared.  That is so annoying.  My cursor jumps arounds and does crazy things (like deleting the whole thing) and I don't know how to fix it.  I haven't taken the time to call customer service, so I have to live with it right now. 
    
    We got the report.  It is a radiology report, not a pathology report.  I used the wrong terminology.  Though it is not at all certain, there may be two other small tumors.  They could also be left over blood, so we are not going to worry about that right now.  Lexi is having another MRI next Wednesday, only of the spine this time to make sure that it has not spread to the spine since the last spine MRI several months ago. 
    
    We have again consulted a neuro-oncologist with another hospital.  She is one of those that we consulted before Lexi had the hemorrhage.  She is with All Children's Hospital of St. Petersburg, which just became a John Hopkins affiliate. If the MRI comes back okay, she will present everything to the tumor board at All Children's on the 31st.  She is not quite as doom and gloom as the other doctors.  As my daughter pointed out, she is more knowledgeable about the tumor in general, though the others are fine brain surgeons.  She is the cancer specialist.  Again, we go into a wait mode, just the new norm for our lives. 
    
    In the meantime, we are continuing the acupuncture, with several sessions a week, which we feel has brought Lexi to a little more awareness.  She will be getting her cap and speaking valve soon and her new speech therapist is convinced she said "hi" yesterday when she covered the trach with her fingers.  I wasn't in the room at the time, so I can't say.  We are still trying to find a physical therapist in home or out and are having a real hard time finding one with an opening.  It is obviously true that physical therapy is a growing profession that will have job openings.  I keep reading that.  We started Lexi on a new organic formula today, so we are hoping that will help as well.   We continue to have problems getting our new 12 hour shifts staffed.  One nurse came yesterday, said the agency lied about the complexity of Lexi's case and left 10 minutes later, after calling and cussing at her boss...the nurse today, only available from 11 to 4, didn't know how to change the trach (overdue by two days!) so my daughter and I did it while she watched....if I had time, I have more material to write hubs about with issues like insurance, hospitals, nurses, and on and on.

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       SomewayOuttaHereposted 12 years agoin reply to this

       wow...thanks for the update...can't believe you two had to show the nurse what to do...that doesn't feel good does it?...on the positive side - you know what to do.......the system isn't perfect is it...work it...that's what you are doing...keep on workin' it....thinking about you and your family

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    Lisa HWposted 12 years ago

    Connie, I just happened to see this.  With what you're going through I can't imagine how you can even manage to think to write even a few lines.  I guess the facts that Lexi is being seen by such specialists, and the fact that the latest person isn't quite as discouraging, are things to hang onto as you keep taking it day by day.  I know this is a strange thing to say, considering the awful thing Lexi is dealing with, but in so many ways she's a lucky little girl to be so extraordinarily loved and cared for.  (I know you don't need me, a stranger, to say that.)
    
    

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    Connie Smithposted 12 years ago

    Truthfully, Lisa, I would rather know you than some of the family and friends I do have.  I don't really consider any of you strangers.  I actually know most of what I need to know about all of you who pray for Lexi and keep up with how she is doing.  You have loving, compassionate hearts.  You have empathy for your fellow man.  You have a special love for children.  You have taken a little girl -- that you have never met -- into your hearts and hold her there still.  You can never be a stranger to me.  In my heart, I call you all friend.  Some of you, like you Lisa, have sent a card, which is more than many people I have known for years have done.  You ask about her.  It is more than a lot of my large extended family has done.  You have all given me strength and a reason not to give up, not just on Lexi and her condition, but in humanity.  I hold you all so dear in my heart.
    
    One of the very beautiful things about the internet and the people we meet there is that we judge them solely on their merits, not having to worry about that wart on the end of their nose (airbrushed out for the pic, you know!).   We have to leave a great deal of natural prejudice (in looks, size, age, hairstyle, fashion) at the door.  Each of us who write at Hubpages actually put a lot of ourselves out there, too.  We probably know each other, really, as well as many of our acquaintances do that we meet on the street.   Not many of my so called friends and family follow my writing, or have bothered to read any of it at all.  I know all of you haven't read all my work here, as I have not read all of yours, but none of us write anything here that doesn't take a little bit of us with it.   I count all of you as friends, if not mine, then of Lexi's.  .

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    Zsuzsy Beeposted 12 years ago

    Thank you again for taking the time out to keep us updated Connie.
    As Lisa has said it already, Young Lexi is lucky to have your love and strength fighting for her.
    
    Continued prayers and good thoughts coming your way.

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    Jen's Solitudeposted 12 years ago

    Hey Lady,
    
    Thanks for the update. Of course I get upset every time the medical profession makes matters worse for you. Sending unqualified nursing staff is just the latest. I am glad you all are equipped to teach the professionals how to care for Lexi.  (sarcasm inserted) I am encouraged that you all will be consulting with a specialist. Hoping of course she will have something encouraging to offer and we will all be able to rejoice in the news the next time you update.
    
    Take care of yourself!
    
    Love Always,
    Dar

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       Connie Smithposted 12 years agoin reply to this

       At this point, we are ready for anything (except trips to foreign countries for untested cures...).   Next week, Lexi is going to go to some treatments in a hyperbaric chamber.  While that is not for cancer, it is a treatment for stroke. 
       
       btw, your Clydesdale hub got edged out by one of my for-profit series hubs, lol.  Up until a couple of days ago, it has been the most popular by far.  Also, Ms. Sarcasm, as I said before I did go to the Lucy and Ethel school of nursing lol.  While that should make me qualified to teach nurses how to do their jobs, poor Lexi has suffered due to being the only willing patient.....seriously, I actually made our newest nurse (who is an experienced pediatric nurse) show me how she did the trach suction and I trained her on how I wanted it done, lol.  Not that I am an expert, but I find that, like any other profession, experienced workers sometimes take shortcuts and it is just not acceptable when it comes to Lexi.  After watching Lexi's eyeballs pop out of her head one too many times when someone has gone too deep, I decided that I will take charge.  It won't happen again if I have anything to do with it -- at home or at the hospital.

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    Jen's Solitudeposted 12 years ago

    Well you have proven that if you don't step in, Lexi will suffer. I am glad she has you making sure she doesn't suffer any more than is necessary.  I sure am hoping she will be able to talk in the future. Seems like that would lift her spirits as much as it would lift your spirits and her mom.  Until then Ethel, or are you Lucy? Keep on doing what you are doing I have complete and total confidence in you!!! (smile)
    
    Let me go click on my Clydesdale hub a few dozen times, I don't like the fact that it is now getting beaten. LOL

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    Zsuzsy Beeposted 12 years ago

    In my heart and thoughts always. Continued prayers and good wishes coming your way.

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    Connie Smithposted 12 years ago

    Thanks, Zsuzsy.  I don't really have anything much to report.  Lexi has not started her hyperbaric treatments, still getting acupuncture (she is there now) and has had a couple of speech and physical therapy sessions, finally.  She does amazingly well and each visit, we see an improvement. 
    
    I was waiting for Lexi's report on her latest MRI (on the spine) from Tuesday, but it doesn't look like we will be getting that today, after all.  The good news is that we are getting regular 12 hour nursing shifts and they are actually staffing it.  The bad news is that I am not crazy about 2 of them (out of 3...).  As my daughter said, "Which ones have we liked?" (out of all of the ones we've had from the different agencies.) Defensively, I say that I've liked 3, but really, until yesterday, I've only really liked the nurse we had when Lexi first came home, lol. We can't get her back because she lives too far away.
    
    It is very hard to have strangers in your home for 12 hours a day, telling us how to take care of Lexi and constantly giving pointers....it really drives me crazy. I keep telling them that Kara and I have somehow managed to keep her alive....
    
    My daughter gets a good laugh, but she always makes me do the dirty work -- like telling them that they aren't welcome to come into the exam room at the dr.  After all the hassles we've already had, we want to make sure that we are in control of Lexi's medical decisions without outside interference.  Believe me, it is not easy to maintain.
    
    I hope I don't sound ungrateful, because we are happy for the help and we do need a break.  Imagine, though, strangers coming in who you don't know, with no idea of their background, experience or their personalities to deal with for 12 hours a day.  At the risk of sounding like a control freak, it would be nice to have more control over who comes in....lol.
    
    Not that I'm any better at hiring.  When my youngest was 3, I had a lady come in for her and my grandmother.  Three months later, I realized that some things were missing.  It turned out that she was a MAJOR klepto and a drug addict, who was keeping my grandmother's pills for herself.  That was very scary, and I can't help but think of her.  That lady's husband had a great job, she lived up the hill from my house, her son was an honor roll student and she was an LPN.  I'm thinking Nanny Cam here.

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    Connie Smithposted 12 years ago

    We got the MRI report soon after I posted yesterday.  Lexi' MRI of the spine came back and there is no indication that there is any cancer in the spine.  We now have to do a spinal tap to ensure that, but at next Tuesday's Tumor Board meeting at All Children's Hospital, they will be discussing Lexi's case.  Her neuro-oncologist from All Children's, Dr. Stapleton, seemed to think that there was some hope as long as it had not spread.  We are now anxiously awaiting the hour for this meeting.  Please pray for good news.

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       Aficionadaposted 12 years agoin reply to this

       Praying fervently!!

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    Zsuzsy Beeposted 12 years ago

    Connie, keeping my fingers crossed that the news is great. As I said already you all are in my thoughts and prayers always.
    Give squirt a humongous hug from me please.

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    earnestshubposted 12 years ago

    Just looking in to see how things have progressed.
    
    I wish you all the luck in the world.

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    Jen's Solitudeposted 12 years ago

    Your update sure is good news. Once the spinal tap agrees with the MRI it seems we can all exhale a little.  I have experienced a nurse coming in our house a couple of hours once a week or so, when my mom was first diagnosed with diabetes. It was a giant pain in the neck. My sister told the nursing agency not to send one of the nurses back. My mom never could adjust to it and just tolerated their visits until she improved.  My nurse who set up my IV's for Solu-medrol was fantastic. Having a stranger in my home for 12 hours everyday is beyond my mental comprehension. You are doing great to deal with it! I am so relieved that the specialists will be discussing Lexi's case. I anxiously await your next update and am anticipating more good news!

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    Connie Smithposted 12 years ago

    No news yet on the meeting of the tumor board.  Poor Lexi has been covered in electrodes for the past 3 days for an in-home EEG to test for seizures (coming off in the morning).  An office test didn't show any about a month or so ago, but they have since accelerated and there is no doubt that she is having some -- some moderate, but also a few that were a bit more intense. 
    
    Poor baby.  We haven't really been able to hold her or get her out of the bed.  We are afraid those electrodes will fall off.  She looks like a little garden gnome with a big sock thing on her head to protect all the wires.  It comes with a little black box and a video camera for recording, so she is really being monitored.  Anxious for their diagnosis and treatment plan also....

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    cindi hposted 12 years ago

    Oh Connie, My heart goes out to you and your precious family. I am so sorry you have friends and extended family that show little compassion or empathy for your situation. Some people just don't know how to deal with their feelings but I am pleased you have found solace within these pages from countless strangers. If I could ever meet you in person I think I'd hug you to death!! All my love and prayers are with you daily and although I don't check in as often as I'd like, know that you and Lexi are in my thoughts each and every day.

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    Jen's Solitudeposted 12 years ago

    Me too Connie! Is she sleeping through it all or do you think she is annoyed by the added hardware? I will keep tuned to this channel to read about their reports and what you make of their assessments, meanwhile continue to be strong, I am sure Lexi draws strength from her mom and Nonnie!

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    Connie Smithposted 12 years ago

    Thank you, cindi h  I wanted to reply to all with this:  It is true that both my daughter and I have friends and family who have never reached out to us about Lexi in any way.  However, we have many friends and family who do ask about Lexi all the time. We have even made some new ones through all this. 
    
    I didn't mean to imply otherwise, except to highlight the wealth of genorosity of love, empathy and support that you all bring.  I will always be in awe that all of you, none who know Lexi personally, have been so generous in heart for a little girl you've never met.

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       Woman Of Courageposted 12 years agoin reply to this

       Connie, I am continually praying that God give you strength in the midst of the situation. Lexi will pull through this.

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    cindi hposted 12 years ago

    Connie (and all hubbers for that matter) I  think that is what makes life so beautiful. The unexpected kindness and support of strangers. I believe there is a blessing in every tragic event but we don't always see it at the moment, Sometimes it takes years to see the good that came out of a bad situation, and when we finally see it, that is when we begin to heal.

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    cindi hposted 12 years ago

    Connie I just finished watching the most exciting video on a Dr. Stanislaw Burzynski. You have to see this!  It sounds very promising. He's done research and has tremendous results with his approach to curing cancer, all kinds, especially rare cases of brain cancer in children. Please check him out:
    
    https://www.burzynskimovie.com/index.ph … amp;id=110
    
    This is a free video which is only available until June 20th

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       Connie Smithposted 12 years agoin reply to this

       Thank you for posting the link, cindi.  Please see my general reply.

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    Zsuzsy Beeposted 12 years ago

    In my heart and thoughts always. Continued prayers and good wishes coming your way.
    Giant sized bear hugs to young Lexi once the hardware has been removed and added strength to the rest of you.

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    Connie Smithposted 12 years ago

    Lexi gave us a scare with a little old blood in her stomach.  She is in the hospital in ICU, but is not in a bad condition.  She keeps running a fever (she tested positive for the rhinovirus) which will probably keep her from coming home today, but she is not in any danger right now and will probably be home tomorrow. 
    
    She had another MRI since bleeding is alway worrisome and it showed another 20% increase in the size of her tumor since last month's MRI.  The good news is that two tiny spots that they thought were tumors on the last one did not even show up on this one. 
    
    We also saw the Burzynski movie and sent all of Lexi's MRI's and medical records to them.  Unfortunately, she is not currently eligible for treatment there.  The FDA clinical trials would be all she would be eligible for anyway, due to her age, and she has to be in a bit better shape.  She has to be totally off of oxygen (she is normally on a half-liter...a very small amount, but she needs it) and recovered from her stroke.  We have a ways to go with that, so it is out, at least for now. 
    
    Our current plan is at least one round of chemotherapy, maybe two, hoping to stop the tumor from increasing while give Lexi a chance to further recover from her hemorrhage.  One of the reasons that I haven't posted is that we were a bit at odds with the plan.  I HATE chemo and personally do not see poisoning her little body and making her sicker.  I wanted to go ahead with the surgery.  Unfortunately, it could be a point of no return and could give Lexi a poor quality, but long life.  In my head, I do not want that, but I admit to extreme desperation at this time.
    
    I am trying to accept the plan and do know that the hyperbaric chamber (which is helping her, no doubt) and the acupuncture that she also goes to, help with the side effects of chemo, so hoping that it works. 
    
    While she is too sick this week, she actually nodded her head last week when I asked her if she wanted me to hold her.  She had also nodded to Maria, one of her speech therapists a few days before, but I didn't see it.  When she nodded at me, there was no doubt at all, so I can see the hyperbaric is working.  She also has physical therapy and the two speech therapists.  Unfortunately, she can't even attempt to talk right now, due to the trach.  I personally think her cognitive level is higher than the docs think but that remains to be seen.  Her EEG came back showing her brain functioning at a higher level than the shorter EEG just two weeks earlier.  This is a child who has a strong will to get better.  I just hope she gets the chance.  Keep praying for her, please.

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       Connie Smithposted 12 years agoin reply to this

       Btw, the blood that was in her stomach was probably from her trachea (say the docs) and, most likely, caused by people who were sticking the tube down too far......

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    ExoticHippieQueenposted 12 years ago

    Connie, all I did this morning was sit at my breakfast counter and log into my hubpages account, with my 10 month old granddaughter playing nearby. I want you to hear how we all become connected.  I have 5 grandchildren altogether. I thought I would look at the forum, since I am new and wanted to jump in and look around...............and then I came across your hub.  Instantly, I was drawn in by the request for prayers. I have spent I don't know how long reading the posts all the way through, getting to you know you, Lexi and your family.  My heart goes out to you all, especially poor sweet Lexi, for the suffering she is going through when she should be playing with her little friends and watching Dora the Explorer! It is so hard to understand and accept these things as they happen to us and our loved ones in this life. How fortunate for Lexi that she has such a fierce warrior grandma and mom to fight her battles for her and make good decisions. I understand that from my own experiences with one of my children who went through many surgeries as a baby. I will be praying for Lexi every day for healing and comfort, and for you and yours for strength and continued hope.  God bless and keep you all!                Amy

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       Connie Smithposted 12 years agoin reply to this

       Thank you, Amy.  I've said this before....we put so much of ourselves in our writings here at Hubpages.  We often do not realize how much we of ourselves we are giving out to others.  After reading your comment and  just one of your hubs, I have had a major glimpse into your life and who you are.  I am happy to meet you and I thank you so much for the kind thoughts and prayers for Lexi.

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    Jen's Solitudeposted 12 years ago

    Connie I think you will be able to do what is best for Lexi even though you are feeling desperate because at the base of everything is your love for her and for what is best for her. When you must decide between such extreme choices there is no way you can make the decision quickly. No doubt you will go over the pros and cons a number of times. In the end you will all make the decision that is best for Lexi. I have no doubt about this. So weigh your options and take as much time as they allow before you all come to a final decision.
    
    Thanks for the update I was getting concerned. Now with Lexi in the hospital I am glad you were able to keep us up to date. I hope Lexi is home soon and that you all have confidence in your final decisions concerning her care and treatment, for what it is worth, I sure trust all of you to do what is best.

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       Connie Smithposted 12 years agoin reply to this

       Thanks for your faith in me, Dar.  I am trying to get on board with chemo.  It's hard.  We always have differing opinions from the professionals, which makes it tougher.  Though, in the beginning, we agreed that her quality of life was very important to us -- I ran a group home for residents with mental challenges and do not want her ending up in one with an IQ of 50 -- but I am desperate and wanting to keep her at all costs right now.  Even though I've been pretty strong through it all, my strength is zapped for the moment and it is making me feel that desperation.  Time is not on our side and I just feel that the docs have allowed any window of opportunity to close.  My own position is that, as we wait for improvements in cognitive level, the tumor is growing ever larger and has the chance to spread even further.  We've already had that scare of two possible small tumors (but didn't show up on latest MRI).  Yes, I feel frustrated and scared.  Their reality and mine are different.  I want Lexi to have a chance and I see no chance with inaction.  It is making me crazy.

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    Jen's Solitudeposted 12 years ago

    As well it should make you feel crazy, my dear friend. Feeling powerless to change the situation easily leads to desperation. You will be able to endure it though.I know you don't even want to consider the consequences, but that is only natural. Give yourself time to digest all this and remind yourself that you are very tired mentally and physically which is why you are feeling so torn. One of my favorite scriptures centers around your love for Lexi, "Love bears all things, believes all things, hopes all things endures all things. Love never fails . . ." That is why you will be able to do what is best for Lexi - you have just that type of love for her. As we all "hope all things" with you, we will keep a positive frame of mind. Life forces us to adjust and if and when you need to make an adjustment you will. Until that time arrives, continue to believe that your love for Lexi will enable you all to do what is best for her. I totally believe it!
    
    Love,
    Dar

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    Connie Smithposted 12 years ago

    Lexi had to go on a vent last night.  In spite of her lungs being clear and just having the rhinovirus (the virus of the common cold) and a small bacterial infection in her trachea, her carbon dioxide levels were too high.  She wasn't breathing out properly, making the levels go up.  Her mother is with her and says that, after the night on the vent, she is acting more herself.  One of the problems that we faced was that, when she had left the hospital the last time, they had counted her out, saying she was in a vegetative state and would never improve.  Well, she has, however slightly, and they weren't understanding that her condition (extremely lethargic, etc.) wasn't normal.  In addition, though she has been fighting all these respiratory problems, has a history of respiratory problems and her pulmonologist is at that hospital every day, we had to ask for an consult.  Does that make any sense?  No more than having to ask for a neurology consult two weeks after her stroke at the same hospital.  It is maddening, but no other hospital wants her, due to the complexity of her problems.  Last time we tried, they put her in an ambulance and sent her to St. Joseph's anyway.... it just cost extra for the ride.  If she ends up going for chemo, we should be able to move to All Children's since they will have all her records in their system (she will have to be admitted for 3 days the first time).  Tonite, I will be with her and hopefully, she will now be improving, since they finally know what is wrong with her. 
    
    Dar, thanks for your encouragement.  We do spend a lot of time "what iffing."  What if we had taken her to a different hospital the first time?  What if we had taken her for a second opinion the first time? This is a big one:  I think I am so good at research, yet I didn't really research her type of tumor, etc.  What if I had really done my research?  It makes me ill to think about it and what a difference that might have made to her current condition.  We jut relied on the so-called experts at hand.  Of course, now we realize that the opinions of the doctors are within the scope of their own limitations at their facility and that there was other options out there.  Personally, it makes me feel like I failed her.  How can I do research and write if I can't even help my own?  That has been a dilemma for me and I am trying to work through it.

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    Aficionadaposted 12 years ago

    Oh, Connie, I'm sending big, big, big hugs to you.  {([!!])}
    
    You do know that your "what iffing" is really just a measure of your love for Lexi.  Everyone who loves will always have some sort of what-ifs, in every kind of difficult situation, no matter how big or how little.
    
    Please remember that.  And also remember that "even if" different decisions had been made or different research had been done, there is no way of guaranteeing that the outcome would have been better or even different.  Other (unknown) factors could have come into play that could have changed the outcome for the worse.  Those are things that we really just don't know.
    
    Sure, here among friends, let your hair down some and admit to your uncertainties and even go crazy a little bit to vent when you need to.  But then, as you always do, suck it up and carry on so that you can keep being the wonderful granma that you are. Many Lexis in the world don't have the advantage of someone as knowledgeable, capable, devoted, and assertive as you to be their advocate.  She is blessed.  Those of us out here who don't even know you are blessed and inspired to see all that you are doing for her.  Most of us couldn't do even half as well as you have done and are continuing to do.
    
    Be good to yourself, so that you can keep being good for Lexi and her Mom.  I'll keep on keeping all of you in my prayers.

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       Connie Smithposted 12 years agoin reply to this

       Thanks for your encouraging words.  I guess it is probably human nature to think the what-ifs.  The good thing is that I am usually pretty good at working through my mental issues, lol, but it takes time sometimes.  I know in my heart that we've done our best (at the time) and hindsight is always 20/20.  Unfortunately, that doesn't make Lexi all better. 
       
       The good news is that she is off the vent and hopefully going home tomorrow or the next day.  When I mention it to her, she starts moving her arms and legs.  She's ready.

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    Zsuzsy Beeposted 12 years ago

    Connie with each one of your updates my heart goes out to you. It has been such a long haul for you all, which has made you all so tired and that is what brings on the 'what-ifs'. As you said you've done the best that you could and if there were any blame to be set anywhere it most likely would have to be at the feet of the professionals who kept and keep delaying action.
    Hindsight being what it is, there is nothing to do but storm onward in great strides with your decisions concerning her care and treatment. 
    Lexi is a real little trooper, her strong will-power, your love and determination, the enormous strength you and your family are working with and the will of God have brought you this far. You know you will choose the best way.
    With Lexi in the hospital I hope you have the opportunity to take a little breather to build up some more of that ever needed strength.
    
    A big enormous hug to you and your daughter. I can only imagine how hard it is for her not to be able to fix her baby in one quick swoop.
    
    Daily prayers and good thought coming your way
    
    ZsB

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    Jen's Solitudeposted 12 years ago

    Connie, is Lexi home now?
    
    The bigger the challenges the more we second guess. It is human nature and we have to deal with it when it bothers us the most. I try to remind myself that if I had known the outcome of a certain problem then of course I could and would have made different decisions. That is why knowing we truly love others who are sick and suffering is such a big deal. It is what motivates us to do the best we can for them. Even medical professionals have to face the fact that they cannot always handle every situation the way they would like to handle them. We learn about our limitations in such situations, yet the love endures.
    
    Your love for Lexi is more than just words, doing the best you can is what matters most. You have done that and more, my friend!

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    Connie Smithposted 12 years ago

    Thanks for the encouragement, girls.  Zsuzsy, I was truly moved by your kind words and Dar, you know you can always fix me with your common sensible words and advice.  Not sure if those words go together, lol, but they work for me in this instance.
    
    Yes!  Lexi is home!  She is very "junky," meaning she will need suctioned every 10 minutes all night long.  Just like when we brought her home the first time, she requires around the clock care with someone awake for it.  The first time, they had told us that we didn't need to stay up, but we did (need to).  For one, we were afraid that, if we went to sleep, we wouldn't hear her machine beeping if her oxygen levels went down.  After a while, she did so much better and though she still needed us in the night sometimes, not to that extent.  Her dad usually has stayed up till 4 am (he is a bigger night owl than I was -- these days I am asleep when I hit the pillow) and then, since we got the nurse, Lexi's mom or I were on duty for those two hours, but we were able to doze.  We are hoping a day or two will help her enough so that she can get back to hyperbaric oxygen and on to chemo. Here is a picture of Lexi today getting wheeled out of the hospital: 
    

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    cindi hposted 12 years ago

    Dear Connie,  I've started and deleted this reply at least 1/2 dozen times, I'm am wordless. No words can express the despair in my heart for your situation. Not knowing the outcome of a particular situation is agonizing and draining and though we've never met Sweet Lexi, I'm sure all of us who have been following her progress feel a bond of some kind that we can't quite explain. Please don't ever give up hope and don't torture yourself with the "what ifs". What if connotes regret, and you have nothing to regret. You and Lexi have been fighting the odds from the very beginning, you are putting in 150% effort and doing everything possible to 'fix' her, there is no regret.
    Always in my thoughts and prayers--every day!!

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       Connie Smithposted 12 years agoin reply to this

       On Facebook, someone posted that Lexi seems to bring out the best in people, but I tend to think she seems to bring out the best people.  Thank you, cindi, for being one of them.

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