MRI

Alyvia has been having some 'episodes' lately where she'll just all the sudden loose her vision. She'll be fine one minute and then the next she can't see anything. At first it just happened once, but then it started happening more and one day it happened 5 or 6 times throughout the day...I was definitely bothered by this and so were the doctors, especially since Livie has been having more seizures lately. The doctor's biggest concern was whether or not the tumor was growing back or if there was scar tissue from where they removed the tumor that was causing these problems. My biggest fear is the tumor coming back. So when Livie started having these problems I was worried sick about it...
We headed down to Primary's and Livie had another MRI. She has to be put out with general anesthesia (GA) for an MRI instead of just regular sedation because for some reason the regular sedation makes her stop breathing...which isn't very fun! ha.

Livie did really well this time with the GA, this was her best time yet, I was so happy things went so well...and then I had to talk to the radiologist about what he saw on the MRI, I was SOOO nervous.........
He said the MRI looked unchanged since her last one and that there was NO sign of a tumor. She does have scar tissue by the cerebellum, but it is minimal. So in a nutshell, Livie passed!! The MRI looked good! PHEW!!!! I am so happy and relieved that there's no tumor!!!!

Since Livie has been loosing her vision, though, we had other appts throughout the day and one of the appts was with an opthamologist. He tested Livies eyes and said they are...... GOOD!! He said they appear healthy and she see's as a normal child should!! Another PHEW!! Especially since Livie did have cortical blindness when we came home from the hospital a year ago. She had her eyes tested then and they did not find any permanent damage (thank goodness!) but they were slow to respond and there was some misfiring caused from all the brain trauma she had...

So I was REALLY happy and thankful this weekend when Livie passed her MRI and her eye tests. What a blessing (:

Because no one knows why Livie is having the episodes she's been having, her neurosurgeon said we'll have to follow up with a neurologist, but he said her brain scan looked good (Yippie!)He can't explain why she looses her vision except that perhaps with all the brain trauma Livie suffered, sometimes her brain still misfires and causes these things to happen. The brain is so complex that who knows?? What I do know is that I'm SO grateful Livie is doing as well as she is and that there is no sign of a tumor. I know the tumor could come back at any time, I hate having that nagging thought in the back of my mind, the what if's. But I guess none of us really know. Life is a precious gift that, sadly, can be taken from anyone at anytime. We have to live each day as it comes and I am definitely very thankful for each day I have with my Livie Bug!! What a wonderful start to 2009, hopefully this is a sign that this year is going to be a good, healthy year for us! (:

**I learn more and more about brain tumors everyday. When we first found out Livie had a tumor in her brain stem I hardly knew anything about brain tumors except that they were bad. I have since learned a lot more about them and thought it might be interesting posting some facts about them...

First, what does the brain stem do??-The brain stem is in charge of all the functions your body needs to stay alive, like breathing air, digesting food, and circulating blood.Part of the brain stem's job is to control your involuntary muscles - the ones that work automatically, without you even thinking about it. There are involuntary muscles in the heart and stomach, and it's the brain stem that tells your heart to pump more blood when you're biking or your stomach to start digesting your lunch. The brain stem also sorts through the millions of messages that the brain and the rest of the body send back and forth.



*Livie's tumor was located in the brain stem underneath the cerebellum, when the neurosurgeon operated on it, he said he had to lift up the cerebellum in order to get to her tumor.

**Brain Tumor Facts
About Brain Tumors
-A brain tumor is a cluster of abnormal cells growing in the brain (in Livie's case, the brain stem) caused by cells reproducing themselves in an uncontrolled manner.

-There are more than 120 different types of brain tumors; some are malignant (cancer), many are benign (non-cancerous).

-Brain tumors are difficult to diagnose; their symptoms often mimic other diseases.

-Brain tumors are the leading cause of solid tumor cancer death in children under the age of 20.

-Standard treatments include surgery, radiation and chemotherapy.

-Because of their location, most brain stem tumors are inoperable. **We are SO lucky that Livie's was able to be operated on.
-Most brain stem tumors are malignant (cancerous)

-The cause of brain tumors is unknown.

-Often, the damage done by brain tumors is due to their size. Because the skull is bone, it cannot expand to make room for even a small mass growing within it. As a result, the tumor presses on and displaces normal brain tissue. This pressure may damage or destroy delicate brain tissue. Many of the symptoms of a brain tumor are caused by this pressure. Sometimes, a tumor may cause blockage of fluid that flows around and through the brain. This blockage can also create increased pressure. **The very first time we saw Livie's neurosurgeon, he said that she had so much pressure from the tumor blocking her spinal fluid that he would have only given her 2 more weeks to live before she would have died from it.

-A benign growth may become malignant (cancerous). In some tumors, a lower-grade tumor may recur as a higher-grade tumor. **Livie's tumor was low grade.

-Tumor grade indicates the degree of malignancy

-Brain stem tumors make up 10-15% of tumors

-Operating on the brain stem is very risky because it controls so many functions

-More knowledge about brain tumors has been gained in the last ten years than in the past hundred years.

Jingle Bells

We had a good Christmas. Livie was so excited that, even though, we were at Grandma's house Santa still found us!

Christmas Eve par-tay

Livie's first reaction after she came upstairs and found all the presents Santa left. She kept saying, "I just can't believe this!!"

We always get matching pj's from Santa :) And of course, while we stayed at Grandma and Grandpa's house we got to help out with farm chores!!

I'm going to miss the Christmas spirit that December brings...and just maybe I'm also going to miss threatening Livie that she better behave or she'll get a lump of coal from Santa, haha. I know, thats horrible of me, but it totally worked on her!!

It was a lof of fun watching Livie get excited about Christmas, it really was like a first Christmas for her and it turned out to be a great one!!

Blessings

I am very thankful for this time of year. I love Christmas time and the spirit it brings.
This is kind of like Livie's first Christmas...last year we had just gotten home from the hospital and she wasn't able to do much, she couldn't see and her brain still wasn't working, and the year before that she was too little to really understand what was going on.
So this year has been a lot of fun watching her get excited for Santa to come and teaching her the real reason we celebrate Christmas- Christ's birth.

I am sooooo thankful that Livie is here to celebrate this Christmas with us. I am thankful for all the progress she has made in just a year. She's been through a lot this past year and Livie has grown up so much.
It has been a very hard year for Livie and me.
I have been faced with circumstances that I never, ever imagined I would be faced with. And because of it I've had to make some very hard decisions.
Even though its been a crazy year, I feel like I have grown so much and learned a lot. Without the bad you can't experience the good and I have been very blessed to experience the good. Alyvia really is my biggest blessing. Because of everything we've gone though I feel like we have a very close, special bond. She has an amazing spirit I'm so grateful Heavenly Father chose me to be her mother.

I am also thankful for all the love and support we have gotten from everyone this past year. THANK YOU.

I try to stay positive, but sometimes I feel a little frustrated and down with some of the things that have happened, so then I count my blessings and realize that I really am very blessed. I wanted to list some of my blessings:

10. Family. I have an awesome, loving family. Including both my mom's and my dad's side.

9. My brother, Logan, who is serving a mission right now.

8. My friends. I have some really great friends, especially from my old ward out in Groveland, they are amazing people.

7. The scriptures. They contain so much history and really are the word of God.

6. The power of prayer.

5. Modern technology

4. I know I already said family, but... my parents. I am close with both my mom and dad. I'm thankful for all they've taught me. They are both incredible people.

3. My testimony. It has definitely been tested this past year, but has really grown as I've depended on it.

2. My sweet Livie bug! She is my greatest joy.

1. Our Savior, Jesus Christ.

I hope that everyone has a MeRry ChRistMas!!! And here's to the new year, may it bring us all good health and happiness!!


.....................................................................................

This last weekend we had a Christmas party (a private party at Rumbi's grill, it turned out really cool) with my mom's side of the family. We don't see each other a lot so it was fun seeing everyone. And I could never find Livie because she was always off playing with one of the cousins. Which she used to never do, she used to always be glued to my side, so it was nice seeing her playing with the kids :)



Goofy family picture

Phillips family, minus Jojo...Ashley...oh and Logan too. haha, we're looking kind of small!

Thanksgiving Recap

I am a little slow in posting this...

We had a great Thanksgiving with the Phillips family. I love coming from such a big, close knit family!!

My sister stayed with me over the weekend, it was great having her around

Granny Goose came to our Thanksgiving feast. Livie LOVES her Granny Goose!

Livie loves playing with her little cousin


Mom and her Livie bug!!!





Then over the weekend, we had to go see the much talked about film...Twilight. 'Us girls' went, we had a good time!

THEN...My sisters and I, Livie and our other 'fourth sister' Kassidee, went shopping in SLC. We made a girl trip of it and had a lot of fun!!!!

My beautiful sisters!

We went and ate at the Melting Pot, it was delish!! I had never been there before. Its a really cool place with lots of yummy fondue and REALLY good dessert!!

*siSters! beSt friends!!

We also went to the Mayan and ate there (another first for me)

It was another really cool place to eat at. They have cliff divers (who just may happen to be buff, scantily clad men diving and doing cool tricks off the cliff... what's not to love there ;) hehe

Livie thought Carl's Jr's was the best place to eat at since they had a play pen and since she got her mom to go inside it with her!!

All in all, we had a great Thanksgiving/weekend, spent with family, friends, food and fun times!!

Better!!

Sorry its taken a while to update... First I want to say thank you for all the love and support, it means more than any of you will ever know(: Livie is doing much better, luckily we had a short hospital stay. Livie has continued to have an on and off fever, but no more seizures (thank goodness!) All her lab work came back negative...so we don't really know what she's fighting. The Dr's biggest concerns are the spinal meningitis or the brain tumor, luckily it doesn't look like either of those two are coming back.

We are just happy to be home! I am keeping Livie cooped up in the house for awhile until she's completely over whatever she has. She's not loving it, but because she has a weak immune system she seems to pick up every bug, so we're just being careful and laying low...and watching lots and lots of Dora!!! (:

Seizures...

Yesterday started off as a good day, I even ran into a few people who asked about Livie and her health and I told them that she is not 100%, and she may never be, but she is pretty darn close. She is doing very well, especially as of lately. Well...I think I may have jinxed us. Right after that Livie had a seizure (she hadn't had one for 6 months) and she had a really hard time coming out of the seizure. For some reason when Livie seizes, she stops breathing (something else that had
really been improving) Even after she came to and started breathing on her own, her eyes were still deviated and she couldn't speak or walk, it took quite a bit of time for her to come out of it.
And even then she just wasn't acting right. I didn't have a very good feeling about things...

A little while later after Livie fell asleep she woke up and started acting...crazy. She was not making sense. She started twitching and acting incoherent, yet she could talk and sit up. Right as I decided I needed to take her to the ER Livie had another seizure, one like she's never ever had before. It was one of her worst ones, it was awful. She went unconscious and stopped breathing. I couldn't get her to come to. Now as bad as this sounds, I am used to seeing my child stop breathing and pass out, she usually starts to breathe on her own as she comes to, especially if I give her a few breaths. But this was not the case this time. I just knew something wasn't right. Livie was unconscious and not breathing for quite some time, panic started to set in. Nothing was working, I could NOT get Livie to come back. I was in a full panic, I called 911 and they dispatched an ambulance, meanwhile I was giving Livie mouth to mouth. She just laid there, purple, unmoving and so lifeless. I got that horrible, awful feeling that is every mother's worst nightmare...I honestly thought my sweet girl was going to die.
And I didn't know how to save her.

Finally, after what felt like hours, for some reason- I like to call it God, Livie sucked in one deep breath of air!!! It was one of the happiest moments of my life. She only took that one breath of air, but it was enough for me.

Needless to say, Livie got her very first ambulance ride (who would have thought with all her medical history she's never had an ambulance ride!) to Portneuf (I decided to go there since my, er, experiences with Bingham have not been great to say the least. I wasn't let down, I was very happy with Portneuf and their nurses, they did a great job!)

Alyvia's been in the hospital since. She's had a fever of 104.8. But with lots of tylenol and motrin we're trying to keep the fever down and figure out whats causing the fever, hopefully nothing too serious. (If the seizures keep up then Livie will have another MRI done) The Dr said that in dealing with an uncommon child like Livie and her extensive medical history, it would be best to keep her for a while and observe her. He didn't like that she had 2 seizures back to back. I didn't like any of it.

So Livie's in the hospital recuperating and so far she is doing good. Hopefully we'll get to go home later today, as long as there's no more seizures.

It was a scary night last night and once again I'm reminded just how fragile life really is. I am so grateful for all the progress Livie has made. Even though she has done so well, her brain is still not healed 100% perhaps it never will be, but I cannot complain, Livie has made leaps and bounds of progress this past year, more than any of the doctors thought she ever could. She really is my miracle. I do not know what I would do without her, she is my life and light. I love her sooooo crazy much. And I am so thankful that she is still here with me.

A little of this...a little of that

We have been tagged...
Tag!

The rules are-
1.Link to the person that tagged you and post the rules on your blog.
2.Share 7 random and/or weird facts about yourself.
3.Tag 7 random people at the end of your post and include links to their blogs.
4. Let each person know that they've been tagged by leaving a comment on their blog.

Ok here we go, Tara tagged me....and since this blog is pretty much for Livie, I'll do half of it with my weird quirks and the other half with her weird quirks.

Megan:
1. I absolutely HATE spiders and creepy crawly things, but I have a weird fascination with snakes and lizards. I would love to have a pet snake. (My brother and sister do and snakes actually make great pets!! ;)

Cute little lizard we found at Lake Powell

Playing with Shayla's pet snake, Billy Bob

2. I don't ever, ever drink soda pop. Simply because I don't like it, I never have. It hurts my tummy.

3. I have to have my toe nails painted at all times. Not my finger nails, just my toe nails. I don't know why, I just cannot go without toe nail polish, my toes just feel naked without it.



Alyvia:
4. Livie has a blanket that her Grandma Phillips gave to her when she was just a small baby. This blanket has turned into her lovey and we don't go anywhere without it. Livie sleeps with it every night and takes it with her everywhere we go.


5. Every night to get Livie to go to sleep (haha, yes, she still sleeps with me)I have to hold her knee. That's right, her knee. I have to 'hold it tight' until she falls asleep, she'll even wake up in the night telling me to hold her knee. I don't know why she likes me to hold her knee, but she does.

6. Livie does NOT like it when things move...like the curtains or blinds, she freaks out and starts crying. Even the necklace hanging off my rear view mirror, if I turn a corner and the necklace moves, Livie screams.

7. Last, but not least, okay I will admit it, Livie kind of has some OCD going on...she has to put her toys in the correct spot every time, whether its on the closet or on her bed, it has to be in the exact right spot every time. Every night she goes into her room to make sure everything is in its correct spot and if its not than she'll put it where it goes. If you try to stop her, she has the ultimate freak out.

Now I tag: Katie S, the Gray gang, Cassie H, Skylin H, Meggan B, Steff C and Emily W.


Another Tag!!
Here are the rules:
1. Go to your pictures.
2. Upload the 4th photo from the 4th folder.
3. Post (explain?)
4. Tag your friends.


I love this picture!! This is Livie and her uncle Caleb (my little bro)on our family vacay at Lake Powell. I love that she is holding his shorts, and her little cheeks hanging out are pretty cute too!! (;

Now I tag Summer D, Erin D, Jenny C, Sheyann B, and Becky S

Well we haven't been up to too much lately...
Livie has been LOVING preschool. She goes twice a week and looks forward to it all week long. She is the youngest one in her class, but she keeps up with all the other kids. I'm very proud of her. She has learned her ABC's and knows all her colors now. Its so fun to watch her learn and grow, but kind of sad at the same time too...my baby isn't a baby anymore. When did she get so big?!!

Livie's first day of preschool


My big preschool girl!

We also went to my Uncle's 50th surprise birthday party. It was a lot of fun and Livie found some little cousins to play with. This was a big step for Livie because she's always been too needy and shy to go play on her own. I've always had to just hold her. But she played and loved every minute of it.

Livie and her cousin, Jadey.

Haha, silly girls!!

My sis and I

Livie, Jadey and Jordyn

My cousin, Andrea, and I

Halloweenie!!

We had a pretty fun Halloween this year, Livie had a Halloween party at preschool and then we went trunk or treating. She thought it was pretty cool that she got SO much candy!!


My cute little witch!


Rawr!! (She was scaring me)

Love my lit witch!