Pray For Lexi!

Meet Lexi -- Our Princess

Alexis Noelle Thomas on her birthday December 5, 2009
Alexis Noelle Thomas on her birthday December 5, 2009

This Is A Very Sick Baby Girl

 Lexi Thomas, also known as our little Princess (and my beloved granddaughter), needs your prayers.  Only two very long days ago, Lexi was a little mischevious, beautiful and healthy two year old.  She was running and playing with her three year old brother, Christopher and her four year old cousin, Justin.  As I type, she is singing a song.  She loves to sing.  She loves to dance.  She loves to eat donuts, which she cannot right now as she is waiting to be rolled into surgery.  Two days ago, we found out that Lexi has a brain tumor.

The only symptom that Lexi had was that she had spent the last twelve days or so throwing up at least once daily.  Of course, she was taken to the doctor.  She was diagnosed with a virus.  The second time, she was given Ranitidine, a medicine for acid reflux, though she had not ever had a problem before these events.  The third time, she was taken to the emergency room.  Lexi's mother was devastated, of course, never dreaming that her baby girl had a brain tumor. 

While they will not be sure that Lexi's tumor is maglignant, they said they were pretty sure that it is.  They also said that they could not guarantee the outcome of the surgery.  She could come out just like her old self -- or not.  Or not is NOT acceptable. 

Please send a prayer heavenward for our darling baby girl.  There is not a doubt that I would trade places with her in a heartbeat, but I was not given that choice.  Please join our family and friends in praying for Lexi.  Lexi needs the ear of God this morning.  Please pray that the beautiful promise of a future for Lexi will be fullfilled.  We love her so much

 

Born December 5, 2007

Halloween 2008

Mirror, Mirror on the Wall, there is no doubt who is the fairest of all!  (Says her Nonnie)
Mirror, Mirror on the Wall, there is no doubt who is the fairest of all! (Says her Nonnie)

Christmas 2008

Fall 2009

Halloween 2009

Lexi Recovering From Brain Surgery

The absolute saddest thing I have ever seen.
The absolute saddest thing I have ever seen.

UPDATE JULY 8, 2010

 I apologize to everyone for not keeping Lexi's page updated.  We have been on a merry-go-round for so long, but Lexi is going to get better!  As we knew at the beginning, it was, and is, going to be a long, long process.  None of it has been easy for Lexi, her mama or me. 

Lexi has such determination!  She makes me proud and she also makes me feel humble.  Many times in my life, I've wanted to give up on something because it was harder than I thought it would be.  Lexi is showing me that it takes hard work to get what you want, but also that the hard work pays off.  

She can sit and crawl now.  She has tried walking, but just does not have the balance yet to do it without help.  She is talking a little bit.  Her first word was "NaNa."  That is me!  She also says "Mama" and tries a few more.  She still has a long way to go, but she is getting there. 

She can color again and play toys!  It is just baby steps.  She is really about the same stage that Jaiden is (my baby grandson who just turned one).  I have no doubt that she will recover.  She has too much determination for that.

With new insurance in place, her therapy will be starting back up and we will be kicking it in gear for lots of appointments.  She is still, unfortunately, on a feeding tube.  She wants to eat so much!  The doctors will be determining soon whether that will happen before adolesence, which I pray daily that it does.  Right now, she has a paralyzed vocal cord that is stopping her from being able to eat without danger.  We pray that it will reverse itself as soon as possible. 

She knows she is not the same right now.  It is very frustrating for her.  Still, she is not going to give up and shows us that everyday.  She is still a sweet and loving baby girl who needs all the prayers she can get. 

Lexi is Getting Better!

My new haircut!
My new haircut!
I can color!
I can color!

UPDATE 2011-2112

During 2010, Lexi continued to improve. She learned how to walk again and was startihg to talk more plainly so that we could understand her. She even danced a few steps and was starting to sing and play with the other children. Then, in January 2011, we found out that her tumor had returned. It actually showed up on the October 2010 MRI, but we were not informed of it. By January, when we were informed of it, we were told it was inoperable. While we were seeking second opinions, on February 10, 2011, the tumor hemmorhaged, creating what is termed a brain stem stroke.

They wanted to count Lexi out, with some doctors, though none of them experts, trying to strong arm us into pulling the plug on Lexi. Two weeks into the stroke, they said that she was in a persistent vegetative state and would never come out of it. We declined to pull the plug, but followed their advice for Lexi to have a tracheostomy. We were then informed by another doctor of ritalin therapy to bring someone out of a coma. We took her home, still in a coma. We found that a persistent vegetative state until after a year in a coma or vegetative state. The doctor who prescribed ritalin added amantadine.

Slowly, Lexi came out of the coma. Almost a year later, she can sit by herself, but only for a moment or two, and can hold her head up a bit. She also can answer some questions by shaking her head. She is undergoing chemotherapy, which the tumor is responding to.

We do not know the future for ourselves any more than we do for Lexi. Having her has taught us to live one day at a time, while keeping an eye to the future. As long as Lexi is living, we have hope that she can somehow recover. There are amazing medical advances at work. There are also miracles and we continue to pray for one for Lexi.

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Comments 98 comments

cosette 6 years ago

she is adorable! all my best wishes go out to her, and to you at this very difficult time ;_;


wordscribe41 6 years ago

You and your family will be in my thoughts today. What a beautiful child. I hope the surgery is successful and she makes a full recovery. I'm so sorry your family is going through this right now. I don't think I can express to you what's in my heart as a mother of 3 young children myself. Hugs to all.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Thank you both so much. Lexi is in surgery right now and has at least an hour to go. They called out to the waiting room and said she was "doing well." Please keep up the prayers! Wordscribe, I know what is in your heart as the mother of 2 and grandmother of 4. Before 2 days ago, I was very fortunate that we have never had any health problems in our family. Still, like you, as a mother and grandmother, my heart always went out to others who had sick children.


Tom Cornett profile image

Tom Cornett 6 years ago from Ohio

Beautiful little girl with a just as beautiful smile. In our thoughts and prayers.


TINA V profile image

TINA V 6 years ago

Your granddaughter is very pretty. She is so blessed to have you as her family. I hope and pray that she will be able to surpass this trial at a very young age. We will include her, you and your family in our prayers. I just want to share this bible verse in Luke 11:9, "Ask and it will be given to you."


lorlie6 profile image

lorlie6 6 years ago from Bishop, Ca

Lexi is absolutely beautiful, Connie. My prayers will be strong for her recovery and for your family today and for days to come.

Laurel


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware

Anxiously awaiting word Connie. She is totally precious and adorable!


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Thank you all for your prayers and well wishes. Lexi is out of surgery, but the next 48 hours are quite critical. We still need your prayers! The tumor "appeared to be very malignant," according to the neurosurgeon. Lexi, if all goes well, will be facing chemotherapy, but she is too young for radiation, according to the doctor. Part of the tumor was "in her brain stem" and we are not sure what that will mean for her as far as future disabilities goes. She has not woken up from the surgery and the doctor will access her when she does. Please continue to pray that she will not have any "deficits" as the doctor called them.


K Partin profile image

K Partin 6 years ago from Garden City, Michigan

I wish you nothing but the best. You, your family and little Lexi will by in our thoughts and prayers. Please keep us updated. K.


Gevena  6 years ago

I am anxiously waiting to hear how Lexie is doing,thanks for keeping us posted,I know this is difficult for you and your family.Connie,she favors you big time!!!!Of course she is much cuter!!!!God says when we ask Him for something we must beleive He will give us what we asked for with one condition,we must ask in FAITH withuot doubting(James 1:6)So keep praying and do not doubt that you have the request you have asked for.I'm praying and I am not doubting!!!!!


JasminRace profile image

JasminRace 6 years ago from United Kingdom

Beautiful, best wishes we are all praying for you x


Faybe Bay profile image

Faybe Bay 6 years ago from Florida

My prayers are with you. Please let us know how she is doing.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

As of 11:00 p.m., Lexi still has not really woken up from her surgery that actually started at 12:36 p.m. Before she was completely over the anesthesia, her heart rate went up, indicating that she was in pain. They gave her morphine. The good news is that she moved her legs and arms, thank the Lord! She also, at one point, lifted her hand to her forehead to scratch it, indicating that she still has coordination. That was wonderful, eliminating two worries and scenarios that could have happened. Some of the others are not being able to swallow, talk, etc. We are taking one hour at a time as the next 40 hours are critical. Please continue to pray for her. She needs all of your prayers. I am so grateful to you all.


De Greek profile image

De Greek 6 years ago from UK

I shall light two canddles for Lexi. One from me and one on your behalf. Your stong love will help her htrough this. Pleae let us know how she is in due course. Our family prays for you


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Please continue your prayers! Lexi is having a few initial difficulties, as well as a few encouraging signs. I mentioned a couple on my last post of the latter. She has been largely unresponsive to even a penlight in her eyes, but she has been under strong medication. In the middle of the night, she had a response when they turned out the lights outside her room. She also once seemed to recognize her mother and lifted her hand a bit toward her. Her oxygen level went down and they discovered that her throat is swollen (she is now on oxygen and the level is back up) and then, later, unfortunately, the area around the brain stem (where her tumor was located) has also swelled. The doctor says now it is a matter of days instead of hours in terms of learning what kind of "deficits" may have happened due to the tumor removal. I greatly appreciate your lighting candles for us, DeGreek and your continued prayers are greatly encourgaged.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware

Connie, Lexi sounds every bit as strong as her Nonni, so I am feeling confident that she will continue to respond as her small body heals and the strong meds begin to wear off. I know you are terrified but keep positive and patient as the next long days pass. Thanks for taking the time to post to all of us worrying about you all. It's amazing how much she resembles you~


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Thank you for your encouraging words, Dar. We are all terrified and you know my heart is breaking....


krisvia 6 years ago

Connie, we carry this burden of grief with you all. We love your baby, even though we have never met that sweet girl. We are crying our hearts out to God, her Creator, and the one who knows her best. Our prayers are for perfect health in Jesus Name. We love you all so much, Hug Kara for us, and tell her we love her, Kristy


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware

I know it is my friend, how could it not when you see at close-up range what is hard to see from a distance- your precious grand-daughter in such a state. We will take it one minute at a time and look forward to seeing pics of Lexi gradually gaining energy and strength. Hang in there dear friend and thanks again for posting the latest pic.


fortunerep profile image

fortunerep 6 years ago from North Carolina

Words cannot begin to tell you how sorry I am about Lexi. Things always can never be explained. Please know that she is in my prayers, do you have an address where people can send get well cards? An abundance of cards would help make things a little brighter.

hugs

dori


aishsebastain profile image

aishsebastain 6 years ago from IRELAND

sure evrything will be fine


am i crazy profile image

am i crazy 6 years ago from Sunny California

I will keep her in my prayers.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Thank you all. Dori, I will post an address on Monday, though your continued thoughts and prayers are the most important thing to me. Lexi's lungs collapsed yesterday and she had to be put on a ventilator. However, we are extremely grateful that it was due to collapsed lungs and not the brain stem, which controls breathing, among other basic, but most important things. Each milestone is a mini miracle to us, leading up to what we hope is the greatest miracle of all, Lexi getting her life back with all her functions intact. She has shown some additional promising signs. One is that her brain swelling has not gotten any worse and tomorrow is the "peak" day in which the swelling typically starts to go down. Please pray that it happens for her.

She also actually pointed this morning to a stuffed animal at the end of her bed. Due to the vent, her little arms are restrained, but she was able to point. She has always pointed with her middle finger, so I knew that it was a deliberate movement on her part. According to the doctor, that means she has shown "purpose." She has also shown some coordination by fluidly lifting her hand to scratch her head, recognition of her mother and reaching out to her to be held (heartbreaking that it wasn't possible) and has communicated some wants or dislikes by shaking her head yes and no. Each little milestone is a miracle to us and we hope that it continues.

I have said that your thoughts and prayers for a little girl that most of you do not know is so comforting and uplifting to me. It helps to give me the strength I need to be strong for my daughter, knowing that so many are praying for her. Please continue to pray for her. She has a long way to go.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware

Hi Connie,

Hoping to read that Lexi is holding her own and even better than the last time you posted. I know Kara and all of you must be exhausted, but that with each improvement you notice, you receive an energy lift as you endure these difficult times.


a friend indeed 6 years ago

Know that everytime I think of her I pray for her,small steps are good,she will be fine she just has to go through the healing/recovery process and that will be filled with a lot of ups and downs,I know because I have been there!!! Be encouraged and whatever you ask God to do believe (spelling?) in the name of Jesus, He will do,remember we talked about this,you must have faith,I do I really do.


Zsuzsy Bee profile image

Zsuzsy Bee 6 years ago from Ontario/Canada

My thoughts and prayers are with you all.

all the best

Zsuzsy


Ashley (Connie's daughter) 6 years ago

My mom is in the hospital, in the same hospital as are sweet little girl Alexis. My mom was having a pain on her left side, so she went to the ER and they wanted to keep her.. Please all Pray for my mom to get better, and for our sweet little girl. THANKS FOR BEING THERE FOR MY MOM, SHE LOVES TALKING TO YOU ALL!!!


manic monday profile image

manic monday 6 years ago from USA

So touching! I wish you and your family the best. Hopefully your mom and daughter will be fine!


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware

Oh Ashley, I was afraid that might occur. So much for one family to handle right now. Please tell Connie to take it easy and concentrate on getting better so she can get back on track. I am glad if she has to be hospitalized, she is at least in the same hospital as Lexi.

Thanks so much for letting us know Ashley! Please give your mom a hug for me!

~Dar


pinkylee 6 years ago

she is absolutely precious! i hope she recovers soon and is back to her old self again just as soon.. **HUGS**


torimari profile image

torimari 6 years ago from Pennsylvania

You and Lexi are in my thoughts. :)


Ashley (Connie's daughter) 6 years ago

I love you Mommy!!!! I hope you get better soon! REAL SOON!!!!!


De Greek profile image

De Greek 6 years ago from UK

Courage!


Sage Williams profile image

Sage Williams 6 years ago

Connie and Ashley- My thoughts and prayers are with you. I can't even imagine what you are all going through. Lexi, is an incredibly beautiful child.

Please God! "Give Lexi the strength to pull through and help her grandma too."

Love and Hugs to all of you,

Sage


sree1987 profile image

sree1987 6 years ago from India

You stole my heart and made me emotional .

Cute child.

Don't worry . All the fellow men in hubpages are brothers and sisters from various nations and cultures.

We will pray for the child and also wipe the tears of her mom virtually from here. God will bless both with long lasting life.

Sree


Gevena 6 years ago

Oh Connie,I knew that you were not totally well and I was hoping this wouldn't happen.Please take care of yourself so you can help take care of Lexie,and you will need to help take care of her when she comes home,your daughter will need her mom to be well,I need you to be well,wish now I had came to Florida,at least I would have been close to you and your family.Know that Lexie,you and your family are being seriously prayed for, may God continue to strengthen and heal you both.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

This problem is not from doing too much. This problem is left over from my recent stay at Miami Valley Hospital in Dayton, Ohio. I have a large hematoma in my side, not visible to the human eye. As I complained about the pain at the hospital, they checked for a hernia and told me to check with my doc when I went for a follow up. I decided to go to the ER since I was already at the hospital for Lexi, so that I didn't have to run around getting tests here and there from my doctor. The ER is one stop shopping, so to speak. They then did a CT Scan and found this. I balked at being admitted due to Lexi, but they said I was in danger of bleeding to death if I didn't go in, so, of course, I did. I can't risk not being around to help with Lexi!

Lexi is now off pain medication (for about 4 hours) in anticipation of being removed from the tube. The feeding tube will stay in, but she is not being fed anything either. As soon as the medication wears off, the vent will be shut off to make sure that she can breathe on her own. If so, the vent will be removed today.

They try to do everything to make sure that the tube will not have to be replaced. There has been no other real cognitive progress to report as Lexi has been too drugged up due to being on the tube. We are still ever hopeful and faithful that Lexi will not have any lasting damage to her brain. Please continue your prayers for her.


jill of alltrades profile image

jill of alltrades 6 years ago from Philippines

I'm praying for you and Lexi.

She is very adorable!


resspenser profile image

resspenser 6 years ago from South Carolina

I have 3 grand daughters and can hardly imagine what you and Lexi are going through. Prayed for you both. God bless you.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

I have fabulous news this morning!! Lexi is on the lowest level of her vent and actually breathing room air instead of oxygen! Her vent should be able to be removed this morning. What a blessing! Our little girl can breathe on her own. Once all this happens, the doctors will be able to better access her for any problems that might have occurred from the removing the tumor from the brain stem. I am still expecting a miracle. I believe that since she was so intelligent with the tumor in her brain stem, that she will be even more intelligent without it. Please keep praying. God is hearing us!


rebekahELLE profile image

rebekahELLE 6 years ago from Tampa Bay

she is so adorable. how precious is her life. I look at her name often at my desk and send her warm and loving thoughts of healing. I didn't know she was in Tampa! I have heard nothing but good about St. Josephs. Continuing to keep Lexi and family in my heart. {{hugs}}


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Unfortunately, Lexi has never been able to be removed from the tube. Her gag reflex was not there (making a trach possibly in the near future) and she was not responding at all to the penlight when shown in her eyes. Great news this evening, though, as she has thrown up twice, showing that she does have a gag reflex. The doc says that yesterday, he would say she was at "30%, but today at 50%" showing a good improvement. My daughter did a google search on her sedative and it said that many people, older than Lexi had a tough time coming out of the sedative and that the average was about 36 hours. That is wonderful news for us and gives us the hope we need to keep our faith in her recovery.


resspenser profile image

resspenser 6 years ago from South Carolina

Praying for her tonight. Hang in there.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

We have incredible news! Lexi had her ventilation tube removed, along with her drain tubes. Unfortunately, she threw up, leaving the possibility that vomit went into her lungs, but I believe that they can suction some of that out, if it happened.

Also, unfortunately, my daughter did not write down the name of the cancer that Lexi had, but we will soon find that out. The absolutely incredible news is that it was a very slow growing cancer that she had from birth, but was totally encased in the tumor. That means that she will NOT have to have chemo at this time and of course, she is too little to have radiation. What they will do is do scans approximately every three months to see if the cancer has returned. The doc says there is a 25% chance of that happening. There was no sign of any cancer in her spine, spinal fluid or anywhere else. Of course, she is still mostly out of it and we do have to wait to see if there is any cognitive damage from the surgery. I think we have had a miracle! I give all the credit to God and to all of you who have taken a sweet little baby into your heart and prayed for her. God is listening.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Lexi had another setback. Her tube is back in, but she is hanging in there. What we just have to realize is that there are are no quick fixes and she is not going to be be better tomorrow, but that it is going to take time, lots of it. With lots of love, care and faith, we are going to get our baby back, but time is what heals.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware

Hi there Connie, was thinking about you so decided to see if you had posted an update.

Disappointing I know because we'd like Lexi to bounce back . . yesterday.

As you said though, healing takes time and as long as she healing, time will just have to tick by slowly, what matters is that she slowly but surely gets better.

She is still the toughest little girl I know and is from good stock so she will continue to improve.

Here's a virtual hug for you (((Connie))) hang in there Nonnie!


gmbaby 6 years ago

Hello Connie,I'm back in Dayton and still praying for Lexie even when I was out of town and so is my church and prayer group,I will also put her on The Gospel Mission's prayer list tonight.Healing after such a difficult surgery does take time and there are bound to be setbacks but keep the faith,she will pull through and Jesus will provide miracles for her,I'm believing that and I'm standing on that!!!


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Thanks, Gevena. The baby is not doing good. Her face has swollen up now. The doc is running tests, but so far, we are not sure what is going on. I am STILL in the hospital myself, but doing okay. I just have to get my Coumadin level to the right amount and I can get `out. I've been sleeping around the clock, trying to get enough rest so that the minute I get out, I can start taking care of that baby. She is probably wondering where I am.....Please don't give up on her. I am dying inside.


jill of alltrades profile image

jill of alltrades 6 years ago from Philippines

Connie, I checked back to see if there is any update about Lexi.

I'm praying for her and you.

I really hope and pray we will have good news soon.

God bless!


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Thanks, Jill. I'm sorry that I haven't updated. With 3 grandsons 4, 3 and 9 months, and running back and forth for Lexi, I have been so busy. My mother also was in the hospital and has been in a nursing home for rehab physical therapy for a few weeks. It has been crazy, especially since my mother still does not know Lexi is even sick as we felt she was not strong enough to know. We are telling her on Thursday morning.

Saturday morning, I woke up to a more aware Lexi, which put a spring in my step and a smile on my face. I felt that she was "back." That is, before it was like there was no one home as she seemed totally unaware of her surroundings. Not that she was able to focus long, but she did focus for short periods. Also, she stayed awake all day long where before she was sleeping most of the time. She was zoned out a lot, but awake never the less.

Today, she had to have a spinal tap to reduce some spinal fluid and she was not happy, but she is now crying a bit (more like a little baby) to let us know when she is unhappy about something. That is music to my ears that she can communicate her needs a bit.

They say as she becomes more aware that she is going to be aggravated a lot as she can't do what she did before. She still has a feeding tube in, so can't eat or drink and of course, she can't talk. She is back to shaking her head a bit for no, but just starting that again.

When I am with her, I swab her mouth a lot as I have been in the position of not being able to drink and my mouth was so sore. I try to keep it hydrated and she seems to like it and opens up her mouth for it. She is starting to again look like the little Lexi we know and love. We want her back so much and we thank God for answering all your prayers up to now. We appreciate it so much.

She has a team of incredible pediatric neurosurgeons that still say that they expect a full recovery, though it will take a long time, more like a year or so. We can wait as long as she gets better. Keep praying for her, everyone, as she is not out of the woods yet. Thank you all!


rebekahELLE profile image

rebekahELLE 6 years ago from Tampa Bay

I've been thinking about you and Lexi and couldn't find any recent news in the forum. I'm happy to hear she is making progress! I hope you will all be able to enjoy a holiday weekend. thanks for posting this!! blessings ~~


lexi123 6 years ago

hey my name is Lexi :p


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Thanks RebekahELLE, Lexi is still having a problem with swallowing, so as a result is still having to be suctioned quite often. As she becomes more aware, she also becomes more agitated, as we were warned she would do. It is heartbreaking when she cries for hours and we cannot console her, but she is kicking up a storm (good) and starting to move her arms and body a bit. Yesterday, I put a little stuffed doll of a cartoon character that she used to love on her bed and she managed to get turned around enough to kick it and kick it right off the bed. She does NOT want to have anything to do with anything she used to love, like Dora the Explorer videos....We think that is because she gets frustrated because she can't interact with them like she used to. It is sad, but she is very slowly moving along. She is only down to her feeding tube, and every now and then, some oxygen, due to the secretions. We have always had someone with her around the clock: either myself or Lexi's mother. We are both getting very tired, but are hanging in there.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware

Hi Connie, I too was searching for an update and was glad to see I just missed this posting. Thanks for taking the time and energy to keep us up to date about Lexi. It is encouraging to read of Lexi's anxiety, as it is a sign she is getting stronger. I'm so sorry it is taking so long, but I know you will both be there for the duration and feel strongly that Lexi will get stronger in a big spurt once she is past this initial hurdle.

Continuing to keep you all in my thoughts!


graceth0mas profile image

graceth0mas 6 years ago from Philadelphia, PA

Awwwww... Connie, I will be praying for cute Lexi. I'll ask my kids to do the same (you know, children are closer to God than us adults). I have a 5-month old baby girl and I'll be devastated if something bad happens to her or any of my children. God will make a way. Lexi seems to be fighting too so I guess she's a strong one.

I pray you be well yourself. Lexi will need you around when she can stand up and go back to playing.

God bless.


charanjeet kaur profile image

charanjeet kaur 6 years ago from Delhi

Connie, this hub is one of the most touching journeys I have ever read. I am so glad that she is slowly recovering. She indeed is one of the adorable and brave grandkid you have there. Will keep you in my prayers and my wishes for having inner strength. Be strong and this tough phase will surely pass by.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Thank you all for writing. Lexi is out of P-ICU finally and in a regular room as of last night. Tomorrow will be the one month anniversary since the surgery, so we are glad that she has moved forward a bit more. On Monday, April 12, she will be moved from St. Joseph's Children's Hospital to Tampa General for extensive pediatric rehab. We are hoping that will help move things along a bit. She still can not eat, drink, sit up, stand or talk (though I thought she said "Na-Na" once or twice -- my grandbabies call me Nonnie). We are still expecting a full recovery but know there is a lot of work to be done before that happens.


thankful 6 years ago

So glad improvements,though slow,are happening.I continue to pray for you all.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Hi all, things are looking up for Miss Lexie! She is now at Tampa General Hospital for her rehab. On Sunday, I was holding her and I touched her feet to the ground. She actually locked her legs! I was so excited. She WANTED to stand. After I put her back in my lap, she kept moving her bottom like a baby does when she wants down. I put her down a few more times so she could touch the ground. Even holding her, I only allowed it for twenty or so seconds at a time because I didn't want to tire her (or do anything to mess up her physical therapy). Needless to say, I was totally thrilled. I had to call the tech to come look lol. She is also shaking her head a bit more to let us know when she doesn't want something. She is still kicking and kicking -- very agitated. As she progresses in her therapy, I am sure that she will be more calm. At least we can see that she has the motivation! Thanks all for being there for us.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Lexi is coming along, though slowly. Again, she has had some back steps, but she is slowing moving forward. She rolled over on her knees and held her head up a few inches off of the mattress for almost a minute. It seems sad for a 2 year old, but it was very exciting! She just changed from a nasal feeding tube to a stomach tube. That has helped her tremendously and I think we will see some real improvements this week. Unfortunately, they think that she has a vision problem and cannot see. They will be running tests soon to find out for sure. I always thought she was just not focusing, but now I am worried that she might be blind. They say that it can be temporary if she is blind, so please, please continue to pray for her. She is a precious child! Thank you all so much for caring about her.


jill of alltrades profile image

jill of alltrades 6 years ago from Philippines

Wow! I'm so happy for Lexi and you! Thank God!

I really hope and pray that it will all be good news from now on.

God bless!


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Thanks Jill. The rehab team seems pleased with Lexi's progress so far, in spite of the medical setbacks. Her back seems to get stronger every day, though she still can not sit up yet, she is working on it. I am so looking forward to the day that she is back 100% and I have faith that it is going to happen.


your friend in dayton 6 years ago

Hi Connie,haven't heard any news about Lexie and was wondering how she and you are doing.Please keep us posted,I know you are overwhelmed at this time and we love you and are praying for you ,Lexie and your family.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Sorry, babe. I have been overwhelmed. I've also been ill myself, with another very recent bout of pneumonia and a major flare up of fibromyalgia. I've had some much needed time to myself (couldn't be around the babies with pneumonia!) and am feeling much, much better. The stress has been almost unbearable, at times, but as you can see, Lexi is making major improvements.

I am trying to maintain a lower level of stress, not only for myself, but to help Lexi, too. She IS going to get better. Time is what Lexi has to have now. Please continue to pray for her. She has a long way to go.


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Great news! Lexi had an MRI and she is still cancer free!!!! She is doing good, starting to string a few words together to make short sentences. She still suffers from nerve damage from the surgery which makes her look and talk similar to a stroke patient. One side of her face is slack compared to the other and her eye on that side doesn't work quite the same. Still, the doc said that he has not given up hope that those nerves will repair themselves and of course, she is now getting more therapy. The surgery has not affected her intelligence. They say that she is more advanced (in what she knows) than many children who have never had a brain trauma. Asking her to point to various animals, people doing different tasks, she gets them all right. Still, her recovery is ongoing and she needs your prayers! Please do not give up on Lexi. She has courage and determination that is unbelieveable, but she needs your help.


Zsuzsy Bee profile image

Zsuzsy Bee 6 years ago from Ontario/Canada

Connie, so glad to hear that Lexie and you are doing better. You, Lexie and your family are in my thoughts and prayers.

kindest regards Zsuzsy


Connie Smith profile image

Connie Smith 6 years ago from Tampa Bay, Florida Author

Thanks, Zsuzsy. Though Lexi continues to recover from her brain surgery, she has been a very sick little girl these past few weeks. She has been in ICU for viral pneumonia. She is out of ICU but no end in sight yet for going home. Doc this morning said she was a bit worse. Still, better than she was last weekend, so I am going with that. She is so tired of being prodded and poked, but her courage and determination to get through this has really been inspirational. Please keep up the prayers and thank you so much for caring about Lexi.


Connie Smith profile image

Connie Smith 5 years ago from Tampa Bay, Florida Author

Lexi is back home again and doing so much better. She is still on oxygen 24 hours, but think that another few days will be enough and she will just be on it sporadically at night like before. Trying to get her set back up for her therapies: physical, occupational and speech (the most important!). Lexi is still on a feeding tube and no end in sight right now for it. She has a weak swallow. We have called in another speech therapist that comes to the house at least one a week to supplement the other one at the hospital. She is better than the hospital speech therapist and I think Lexi is already making better improvements with her. Right now, eating is the number one priority for us. We want her life back for her and she has sobbed to eat. It is so sad.


Zsuzsy Bee profile image

Zsuzsy Bee 5 years ago from Ontario/Canada

Connie, how great that Lexi is home. I always believe that being around familiar stuff makes recovery a bit easier. Please give the little squirt a giant sized bear hug. She stays in my prayers.

regards Zsuzsy


Connie Smith profile image

Connie Smith 5 years ago from Tampa Bay, Florida Author

Thanks, Zsuzsy. Lexi is really moving along, no thanks to her insurance company or her therapists. We have hired a home speech therapist to come in one day a week and she has made strides with Lexi that have totally eluded her outpatient hospital speech therapist. She really is starting to talk so much more. She has been able to walk holding on to something or holding my hand, but leaning heavily. I have noticed within the past few days that she is not leaning so much, but using her own balance and strength to walk. Just today, she stood up and took about 12 steps! I think if she wouldn't get in a hurry that she could walk. Right now, it is just too new again. It has been a long hard road, but hopefully there is an end in sight. She is still on a feeding tube, which is why the speech therapist is so, so important. Our home therapist is helping so much and I think that she will be able to eat again within a few months. I pray for that daily. It is so hard for her to see others eat and drink when she cannot. So, so sad for her. I appreciate your prayers and also those of everyone else here who has prayed for her. Her continued existence and determination to recover are the result of those prayers. I will never forget.


Zsuzsy Bee profile image

Zsuzsy Bee 5 years ago from Ontario/Canada

Connie what awesome news. Lexi the strong little trouper... I bet hearing her little voice is a relief in itself. Strength to you, Lexi and the rest of the family, you're almost over the hurdle. Thank you for posting those fabulous pictures of Lexi too. She's looking really good.

my thoughts and prayers are with you

Zsuzsy


Connie Smith profile image

Connie Smith 5 years ago from Tampa Bay, Florida Author

Thanks, Zuszsy. Lexi is making so much progress that just since I replied to your comment, Lexi has started walking! She actually walked from one room to another!!! Every giant step in her road to recovery has taken place when another kid is around. Her brother stays with my other daughter and little cousins his age thru the week so that he can go to pre-school -- something we started when Lexi was so sick. His school is not close to our house, so we let that continue after Lexi got out of the hospital. Fortunately, won't be much longer as we are moving closer. When he is home, she really tries harder to be able to do what she used to. Still, with her bout of viral pneumonia and her 3 week stay in ICU only little over 6 weeks behind us, we are a bit paranoid about him bringing home illness, which he did with the virus. It was the common adenovirus -- common, but very dangerous to Lexi. We try to balance the need for her to be with him and our paranoia over the illness. It is difficult. Last visit to ICU, at one point, they were standing by to vent her. The doc was talking about IF she came off the vent, not when, so it is all very scary and reinforces that paranoia we have over protecting her from illness. Unfortunately, small kids catch everything at school. Lexi's illness has affected us all, but hopefully, it is not going to be much longer before life returns to normal for us all.


gmbaby59 5 years ago

Love you Connie,we are praying for Lexi.


Connie Smith profile image

Connie Smith 5 years ago from Tampa Bay, Florida Author

Thank you so much! Lexi is doing so well, it is hard to even comprehend that there is another tumor growing inside that sweet little baby's head. She continues to show progress with speech and activities. She is very coordinated for a child who couldn't hold an object in her hand last May. I have two wishes....that she have a chance in life for a life and that she can eat actual food. I want her to eat, but of course, now, that her life is in danger again, that is secondary to her survival. Please continue to pray! I believe that God is listening.


Dorsi profile image

Dorsi 5 years ago from The San Francisco Bay Area

I'm so sorry. What a difficult thing to go through. Your family sounds amazing, Lexi is a darling and my thoughts and prayers go out to all of you.

She's a little fighter, for sure!


Connie Smith profile image

Connie Smith 5 years ago from Tampa Bay, Florida Author

Thank you, Dorsi. She is a fighter and very determined to get her life back. It breaks my heart. Today, she was pretending to eat a play cookie, because she is still on a feeding tube from her first surgery. She has come so far, now here we go again. We are having better news and several doctors think that her new tumor is operable. She will probably go to St. Jude, who has extended an invitation for Lexi to go there for her surgery and radiation therapy. We are only waiting for new MRI results and a last round of opinions from all the experts before it is decided. Please pass the word. Lexi needs all the prayers she can get right now.


skye2day profile image

skye2day 5 years ago from Rocky Mountains

Connie I landed in the forum which I rarely go to and it was no mistake. I am on it with the prayers precious sister. Jesus will keep you under the shadows of His wings and give you and yours strength. I pray for Lexi that Our Lord Heals little princess inside out from head to toe. In the Name of Jesus Christ. I am standing with you. You keep close to Jesus connie. Read scripture to strengthn you ok. GOD is a GOD of miracles. I am lifting you all on High. We do not always understand, God knows our hearts he understands. May God Bless you and yours Connie. Love n Hugs.

Linking out to my fb and twitter Power in Prayer.


Connie Smith profile image

Connie Smith 5 years ago from Tampa Bay, Florida Author

On Thurday, February 17 at 10 am(this morning), we are meeting with the doctors. We do not know what they are going to say. Thank you for the prayers and for lifting us up. It is very difficult right now.


Wendy Krick profile image

Wendy Krick 5 years ago from Maryland

In my prayers!


Joy56 profile image

Joy56 5 years ago

My thoughts and prayers are with you.


Connie Smith profile image

Connie Smith 5 years ago from Tampa Bay, Florida Author

Thank you, Ladies, all prayers are greatly appreciated. Lexi is not good right now. She is in a coma, at home now, but she had a hemorrhage of her brain tumor. It is not good, but we are praying for a miracle. Please pray for a miracle for Lexi.


cindi h profile image

cindi h 5 years ago

Connie I pray this hub proves to be the miracle you need!! Lexi will remain a part of my daily prayers. God Bless and Be strong!!


Paulette 5 years ago

We know how you feel. Our 15 month old Alexandria - Lexi for short has a brain tumor. Her 2nd mri is friday, 7.29 and we pray that the tumor has shrunk or stopped growing because if it hasn't, she will need surgery and with surgery there is a 60% chance of blindness because her tumor is growing from her optic nerve. Our prayers are with you as our hearts go out to you because we know exactly what you are going thru.


Connie Smith profile image

Connie Smith 5 years ago from Tampa Bay, Florida Author

So sorry to hear this, Paulette. Even though Lexi's tumor was not at the optic nerve, they say she cannot see. We think she can see sometimes and maybe not at others. It looks more every day like she is not going to make it, though we can never give up hope until she takes her last breath. My advice to you is to NEVER take one doc's (or group's or HOSPITAL'S) opinion. I say that the doc's (who are usually afiliated with the hospital) are only as good as the scope of their own services they provide there. Too late, we found that there were many opinions that differed from our own doctors and these were with the top 10 brain centers in the country (unfortunately, our hospital was not one of them). I also encourage you to do your own research and never, ever just listen to what they say without researching it on your own. If we had, Lexi wouldn't be in the next room dying a slow death. I will add your own little Lexi to our prayers. My heart aches for you and your family.


lovelypaper profile image

lovelypaper 5 years ago from Virginia

Bless her little heart. I'm so sorry for what you and your family and Lexi have had to go through. My prayers are with you.


Connie Smith profile image

Connie Smith 5 years ago from Tampa Bay, Florida Author

Thank you. We appreciate all prayers for Lexi. She is an amazing little girl.


Eric Newland profile image

Eric Newland 4 years ago from Dayton, Ohio

This is such a sad, yet amazing story. That picture after her surgery hits close to home; I have a few very similar ones from my own daughter's heart surgery.

I'll be praying for you and Lexi. Wishing you the best.


Connie Smith profile image

Connie Smith 4 years ago from Tampa Bay, Florida Author

Thank you, Eric. Lexi's story is not over and yes, it is amazing! She is an amazing child who hasn't given up, in spite of all the set backs she has faced in her short life. She truly encourages me to believe that all things are possible and that she is going to get that miracle we all pray for.


habee profile image

habee 4 years ago from Georgia

Connie, I think of Lexi every day and pray for her every night. As a grandmother, I can't imagine what you're going through. Please give little Lexi a hug from Holle, Lexi, and Audrie!


Connie Smith profile image

Connie Smith 4 years ago from Tampa Bay, Florida Author

So sweet of you, Holle. We are all just a moment from despair. That is why we need to count our blessings every day and enjoy our time together. We never know what the future holds. A while back on FB, Lexi's mom posted that she had thought life was so bad before, but after Lexi had her stroke, she realized that things had not been so bad after all. In order to get through all this, I just make sure I do not lose sight of that and so I have to cherish the good in every day and thank God that we still have Lexi in our lives.

As you may know, in order to keep moving forward in life while going through all this, I went back to school. Friday, I have to give a tribute speech. I decided to honor my own grandmother, who has been gone for twenty years now. Just today, I was thinking about her legacy and how, through the person that I am, the lessons that she taught me as a child and how I try to pass that on, just how far a grandmother's influence can reach through time. I thought that was pretty cool and I can see that Lexi and Audrie have a grandmother who I can tell is going to be influencing them in some of the same ways.


Debby Bruck profile image

Debby Bruck 4 years ago

What a precious, sweet, beautiful little girl and what she has to endure is unspeakable. The latest news indicates we must prayer a little harder now. http://hubpages.com/forum/topic/65717 We hope there will be a miracle. blessings, Debby


Connie Smith profile image

Connie Smith 4 years ago from Tampa Bay, Florida Author

Thank you for your kind thoughts, Debby. Lexi isn't giving up and neither are we. Any time spent with her is a blessing itself. She really is amazing.


Rolly A Chabot profile image

Rolly A Chabot 4 years ago from Alberta Canada

HI Connie... you have all our prayers here in Canada... I will forward this onto the chain of people I have throughout the net. It is so hard to think of what she has endured so far...

Hugs from Canada


Connie Smith profile image

Connie Smith 4 years ago from Tampa Bay, Florida Author

So very kind of you, Rolly. Lexi continues to improve slowly from the stroke. Both her legs and upper body are strong enough to hold her up, but she doesn't have the balance to do it. Otherwise, I believe that she could sit and even stand on her own. She still shows determination and so, we continue the fight. We appreciate all prayers and loving thoughts for Lexi.


Nitin Pillai profile image

Nitin Pillai 3 years ago from Mumbai, Maharastra, India

How is Lexi now? Is she fine?


Connie Smith profile image

Connie Smith 3 years ago from Tampa Bay, Florida Author

Thank you for asking, Nitin, but Lexi got better, then her tumor returned. They didn't tell us about it right away and by the time we discovered it, it was inoperable. While waiting for a second opinion, she had a stroke that caused bleeding on the brain stem. That was two years ago and she has been a sick little girl ever since. I hate to say it now, but she is now in the dying process. She has a week or two at most, I think, but maybe just hours. It is hard to tell because she has been a fighter. They've discounted her before and said she only had weeks to live more than once, the first time almost three years ago. Still, it is very close this time and it would take a full blown miracle this time around. Please pray that she doesn't suffer any more. It is time.


Sunshine625 profile image

Sunshine625 2 years ago from Orlando, FL

I'm so very sorry for what you and your family have been through. Bless your beautiful granddaughter.


Connie Smith profile image

Connie Smith 2 years ago from Tampa Bay, Florida Author

Thank you. She passed away on March 9, exactly four years after her original brain tumor diagnosis. We were so blessed to get to keep her for so long.

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