We're back

We are back, the roads were so bad yesterday that we had to stay an extra day....but thats OK because the MRI looked good!!! I am so happy! Alyvia is still going to have to have an MRI every few months to make sure the tumor isn't growing back, but the longer she can go without it coming back then the better her chances are that it won't come back.
I was really nervous with Livie being put under by general anesthesia, but she did really well....she didn't stop breathing....the whole day, yippie! (they placed the IV and took her blood when she was under....so that was really nice.) We also got to see some of our old nurses and techs from the NTU. We don't really miss the hospital, but we do miss the awesome nurses and techs we had, including the ones we didn't get to see yesterday. So here's a shout out to all our old nurses and techs.....WE MISS YOU GUYS!!

Alyvia had a pretty good trip to the hospital (I hear those are pretty rare) so that was really nice. We also got to stay with "Granny Goose," Livie's great Grandma and we had a really good time. Thanks Grandma!!

On a sadder note, when we were at the hospital I ran into a family I had met in the PICU. Their little boy was almost 2 and they found out he had a brain tumor....his was cancerous. Those kind of tumors are called "cancer of the soul" because the cancer spreads and it spreads with a vengeance. Their little boy, Carson, had gone through 4 rounds of chemo and his little body just couldn't go through anymore. When I saw his mom on Monday she said that the cancer had spread so much that there was nothing more they could do for her little son.....the cancer is killing him.
I can't help but think we could be in a similar situation with Alyvia. I don't understand why these things happen. Life really is a gift and we just have to enjoy each day we have. My heart goes out to Carson and his family.

MRI

We are going back down to Utah, Alyvia has an MRI early Monday morning. It is a follow up MRI to make sure that the tumor isn't growing back. Alyvia's tumor was the lowest grade and not cancerous, however, they can grow back. Hopefully not this soon (actually hopefully not ever!) if it does grow back soon then it would most likely be treated with chemo or radiation. Hopefully we won't ever have to go there.

I am a little nervous...Livie has had numerous CT scans (they only last a few minutes, but they don't show as much as an MRI) an MRI lasts 45 min to an hour and Livie will have to hold perfectly still in a tiny enclosed space....yeah right. So she will need to be sedated...but Alyvia does NOT sedate well and usually sedation causes her to stop breathing (which happened during her last MRI and she had to be "bagged" in the middle of it...needless to say we didn't get any MRI results.) This time everyone is aware of Alyvia and her "issues" with breathing so Livie will do the MRI under general anesthesia. Everything should go well, I just get nervous. I guess it's because I still remember the MRI when the doctor came in and said that Alyvia had a tumor in her brain stem. In an instant our lives were changed forever.

We are sooo grateful though, that the tumor in Alyvia's brain stem was not cancerous. After everything that has happened to Livie, it has really given me a new perspective on life. Which is why I love this quote: "When you arise in the morning, think of what a precious privilege it is to be alive -to breathe, to think, to enjoy, to love." Marcus Aurelius

Doing really good

Alyvia just got done with OT and her therapist was really happy with the progress Livie has made. Alyvia is where she needs to be for her age, her mentality and motor skills are where they should be. She is doing really good.
I had read horror stories about people with cerebellar mustism.....how it usually takes up to a year to re-learn everything and even then they still aren't the same as before.....
We are so happy that Alyvia is back, she is a normal 2 1/2 year old. We didn't know if she would ever be herself again, but she is. Her vision has returned and is doing great. Her hearing is fine (She will have to have it tested throughout the year since she had spinal meningitis) and her mentality is fine. I can't believe what a miracle it is that Livie is doing so well. That she is back to her regular self.
I really took a lot of things for granted before all this happened. We are so thankful that Alyvia is still here and that she is doing so well!

Livie with Great Grandpa and Grandma, Charles and Itha.

Hmmm

Since we've upped Livie's seizure medication she hasn't stopped breathing near as much. In fact she's only stopped once each day since (and not at all today...knock on wood.) She was doing it 3-5 times a day, so I think once is much better, now if we can just get it to stop all together.... I am just happy her episodes are decreasing, hmmm....maybe she was seizing and just needed more medication to help.

Everything else is going good, her walking is just about "normal," her balance is pretty good and she is running and jumping now! Alyvia had to re-learn all those things and has made a lot of progress with it. You almost can't tell she couldn't walk a month ago. She is living life and loving it!!

Walking like a big girl!!

Update

We spent all day at Primary's yesterday, but we are home now. I was a little worried that they would admit Livie....and I really don't think she would handle it well. She definitely remembered the hospital and was not liking it one bit. (She started screaming as soon as we walked in)
Alyvia saw her neurosurgeon after she had a CT, (during which she passed out) but her CT looks great! I am so glad. They thought that maybe Livie had hydrocephalus again,(fluid on the brain) but she doesn't, so that was a relief. I am so thankful that her brain looks good.
Then she saw a neurologist, and he didn't really know what to think about her breathing episodes. He ruled out "mad spells" (where kids just get so mad they actually hold their breath until they pass out,) I guess it's pretty common.
Where Alyvia does this all the time, even when she is sleeping, and she doesn't scream or give any warning that she's going to do it, she just gets this look on her face and then she turns blue and then she passes out, it's just bizarre. She is doing it at least 3 times a day now, and then last night she did it twice. She could possibly be seizing, since seizures come in so many different forms, but it wouldn't be a typical seizure....but then again nothing about Alyvia is typical. For now her seizure meds are being upped to see if that'll help.

Then Alyvia was supposed to have lab work done, it didn't go over so well...It was a 30 minute process...they poked Livie a few times (as she's strapped down to a bed with an oxygen mask being forced on her face) and they kept poking her, in the end they couldn't even get any blood, her veins are still too shot. It'll be a wonder if the girl doesn't need psychotherapy after all of this! haha!
We are going back down to Primary's in 2 weeks for more check up's....So for now we are just glad to be home and thankful that her CT looked so good.

Going back to see the nuerosurgeon

Alyvia's done well these past few days, she is off of her agitation medication and her walking is even better. Her breathing issues, however, are getting worse. She stopped breathing 3 times today and passed out each time. We still aren't sure why she does this. Sometimes she is only passed out for 10 seconds, and sometimes she is out much longer. She turns blue every time though, and it scares me to death every time she does it. Sometimes we have to use the bag and mask on her and sometimes she starts to breath again on her own. We still don't know if these are seizures or not...all I know is it is getting worse. Livie's pediatrician was pretty concerned so he talked to Livie's neurosurgeon down at Primary's and they both felt like Alyvia needs to be seen....tomorrow. So we are going back down to Primary Children's tomorrow where she will see her nuerosurg and have tests ran. I would be lying if I said I wasn't nervous. I am hoping and praying that this isn't anything too big and that we can figure out whats going on....but then again if it is something big, I don't think I want to know. (Ignorance is bliss, right?) Hopefully this is just a little bump in the road. It hasn't stopped Livie from making daily progress and she continues to be her Livie self, and for that I am grateful.

Good News

CHEESE!!! My happy girl!


She found this hat in her diaper bag and thought it was pretty cool!

Getting a love


Alyvia hasn't had anymore big breathing issues, yay! The doctor also thinks that Livie was having a seizure when she stopped breathing the other night. She came home on a seizure medication and we made sure that she is gettting enough of it in her system. She has had a few small breathing episodes, but I didn't even have to use the bag and mask on her, she recovered pretty fast. At night time her SAT's have been staying up and she stays oxygenized, so that's good.

She is starting to walk really well now, her physical therapist is only coming once a month now. He was quite impressed with the progress she has made. (OT is down to once a week now.)

I still can't get over how well Alyvia is doing. She is just so happy now. I knew she was sick before all this happened, but even I didn't realize how sick she really was. I imagine she must have felt pretty crappy. Looking back at pictures she was soooo skinny and her eyes just looked sad. Seriously, I remember looking at her a few times and thinking how sad she looked, her smile didn't reach her eyes.
Now though, she is just so happy, she even wakes up happy (and she is not a morning person!) And through this all Alyvia hasn't thrown up one time! She has a healthy appetite now and she is most definately not underweight anymore! haha We've had a great past few days.
Also one of our PICU buddies, Kaidence, finally got to go home. She got her long awaited new heart and is doing well enough to go home! We are so happy for her and her family! After being in the PICU it's so good to see people make it home.

*pre brain surgery*
As Livie got sicker, she got so skinny! She threw up so so much. Even through the night she always threw up at least 3 times. It was all related to the tumor, she hasn't thrown up once since the tumor was removed.....

*post brain surgery
Now...Livie has beefed up a litte...okay so maybe a lot! ;)

Seizures?

Alyvia has continued to do great, her agitation is getting better and so is her walking. She is walking all over now. She only has physical therapy and occupational therapy once a week now. She has made a lot of progress and is so much like the "old" Livie, it's unbelievable. She still has her cute sense of humor and cracks us up everyday. It's so great to see her acting so normal. I felt like things were almost too good to be true....

Last night Alyvia was asleep in bed with us when she woke up gasping for air trying to breathe. I was awake and tried to calm her down, but she was turning blue so I immediately got ready to "bag" her with the bag and mask we have here at home. She was so stiff and jerky, her teeth were clenched down so tight we had a hard time bagging her, meanwhile she is still not breathing and turned this unreal purple-blue color and we kept trying to bag her. She still wasn't breathing so I had to call 911 and Hutch had to pry her mouth open and give her mouth-to-mouth. After what seemed like forever, Livie finally took a breath.

She has done this "breathing episode" a couple of times since we've been home from the hospital, I am familiar with using the bag and mask on her, but last night it wasn't working. She has never stopped breathing in the middle of the night before...I have never had to call 911 before...I've always been able to get her to take a breath. It was horrible, as a mother seeing your child like that.
After the paramedics came and assessed Alyvia we decided she was doing alright and if she did it again to take her to the ER. They thought she was seizing, she had all the classic symptoms for it. After everything calmed down we went back to bed, 5 minutes later Livie was blue again! (She was at least breathing on her own, just not very well.) Needless to say last night was not a good night.

Today Alyvia is doing better, her coloring finally looks better, she was gray all morning. Her heart rate has been high, but her oxygen looks good. (She was on oxygen all night last night because she couldn't keep her SATs up, she was really struggling last night) We were up all night watching Livie, making sure she took a breath. We still aren't sure why she just stopped breathing in the middle of the night with no warning. She has never had a "breathing episode" as terrifying as last nights. I don't know if it was a seizure or not. I do know that Livie likes to keep all of us on our toes....

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Livie's Back!

These pictures were taken a day before Alyvia's brain surgery. It's taken me a while to post them because I had a really hard time looking at them and going through them. Which sounds dumb, I know I just needed to be grateful that Livie was still here, but it was stll hard looking at the pictures and seeing how she used to be....so normal, she was a regular 2 year old.

Don't get me wrong, I am so happy that we still have our Livie, but it has still been hard to see her so agitated, upset and so unlike herself. Things she used to love, she didn't love anymore, things that used to make her laugh didn't work anymore. We had a hard time getting her to even smile. Some days were better than others, and some days were just really hard. She has had a lot of agitation and she would get really upset and it was really hard to calm her down.

Because of everything that has happened to Alyvia, especailly with the Cerebellar Mutism, we knew that it was going to take time for Livie's brain to heal. The doctor's said give it a year, and even then she might not be able to talk well or might not be able to walk, but hopefully she would be 60-80% of where she was before all this happened, some kids never fully recover and some kids do.

However, these past few days have been the best we've had, it's like we have our little girl back!
Alyvia started walking!! Her walking is a little awkward and slow, but she is walking!(: She does have Clonus (neurological involuntary muscle spasms) in her right foot (her right side is her weak side) so this makes it a little harder to walk, and she has a hard time pulling her feet in.
Last night Livie was loving pulling herself up to things and walking a few steps and even trying to jump, afterwards she was wheezing pretty hard, I am hoping this is just because she hasn't used her lungs in months! Hopefully now that she is more active her lungs will open up more. (Parts of them have closed off)

Walking all by herself!

Not only is Livie walking, she is just SO much more like her old self. What she says, what she does, her little attitude, its totally Livie. Its like she all the sudden remembered everything she used to do. Yesterday I found her in the bathroom going through all the drawers and cupboards playing in my makeup. Then she got into the DVD stack and pulled all the DVDs out. She also got into the filing cabinet....she pretty much destroyed the house and it was good to see her do it, to see her remember where everything is. This is exactly what Alyvia used to do on a regular basis, it's so good to see Livie being herself in everything she does. It's almost like something in her brain clicked....and now we have our Livie Bug back.

These are her favorite boots, she makes me put them on her everyday!

This is her pouty face



Christmas this year was a lot different than last year. Alyvia had C-Diff really bad and she was really agitated. She wasn't into opening presents at all. So we saved most of them and opened them when she felt better. She still has her good days and her bad days and Christmas was one of her not so good days.

Just playing

Gratitude

Alyvia is doing pretty good! She is crawling and scooting all over and trying to walk. She is just so much more like her old Livie self, I love it! She is so smart, she remembers so much from before all this, and that's comforting to me, I know that her brain is working right. Her mentality is what it was before, which even if it wasn't I would still love her to pieces, but it's nice to know that she isn't "slow," she is most definitely with it. She has made so much progress.
Livie does, however, have C-Diff...yuck! It's horrible, she's had such a hard time getting rid of it. (Which explains the fever she had a few days ago.)

Right now we are just getting ready for Christmas and enjoying the holidays. We have so much to be grateful for. Our baby girl is home, and she is going to be okay. That's the best blessing we could have.

I know that I have said Thank You, but I can't say it enough. Every one has been so giving and supportive, it has just been incredible. From doctors and nurses, friends and family, co-workers and complete strangers, I can't even begin to tell you how much the kindness and prayers mean to us, or how much it helped. THANK YOU.
And to God, He is the reason Alyvia is still here. I have learned so much through all this. I know that Heavenly Father really does want for us to be happy, even through trials. I don't understand why these bad things happen, but I know that Heavenly Father loves us, He especially loves his sweet, little children.

I am so thankful that I still have my Livie Bug, she teaches me so much and she never ceases to amaze me.

We hope that you all have a Merry Christmas!

I hate germs!!

We have been loving home life. We decided to put up a tree and lights, other wise it just wouldn't feel like Christmas. Alyvia is getting a lot better at moving and crawling, especially if it's something she really wants. Who would have thought I'd be so excited to see her demolish the Christmas tree and get into the presents underneath it!(; We've been home a week, and I think Livie is finally adjusting to her new environment.

Unfortunately, yesterday Livie was sick and had a fever all day. Her white cell count is a little elevated, so I am praying it doesn't turn into anything serious. (It is possible to get spinal meningitis twice...hopefully that does not happen.) We have been so careful with her, but her immune system is just so fragile. She hasn't had a fever today....so I hope she's okay. I am a super freak now about germs, I've been sanitizing everything, but Livie still seems to pick up the germs!

Other than yesterday Livie really has been doing better, her talking and speech are great, her vision is good, and some of the swelling in her face is going down. She still gets pretty agitated and fussy, some days its not as bad though. Hopefully yesterday's fever and elevated white cell count doesn't turn into a setback. I am hoping that Livie will be all better by Christmas. (:

She loves this horse!


It's so gOOd to be hOmE!


Jayden and Rachel, friends from the Trauma Unit

The going away party

Livie lovin the chocolate cake and ice cream at the party!


She wanted Gramma to "tickle" her (aka scratch her back, and her arms, and her legs...)

Home Life

It sure has been nice to be home. Even though we can't have visitors, it has still been good. Livie is doing really well in her own enviroment. She remembers most things. She still isn't walking, she starts therapy Tues. but today I got her to crawl by coaxing her with crackers. It worked like a charm! She is slow and its hard for her, but she did it. She even pulled herself up to the couch in standing position (because there was another cracker up there!)
Alyvia still gets really agitated, she can't handle a lot of stimulus. She is also really swollen from the steroids (thank goodness she is off of them now.) In time the agitation should get better and the swelling should go down.
Her vision is doing quite a bit better, I think she can see a lot more clear and a lot more often. She also passed her hearing test at the hospital. She will still have to have regular hearing checkups because she has the potential to lose her hearing during the next 6 mos (because of the spinal meningitis) but hopefully that doesn't happen.
Right now we are just enjoying being home! I actually just finished unpacking from the hospital (I thought we were going to have to rent a U-haul to take all our stuff home! haha)
Alyvia's lungs are getting better every day, she doesn't have a cough anymore and her C-Diff is finally getting better. Livie just needs time to heal, and then when she's all better we'll be able to see everyone that we can't see now.
**THANK YOU everyone for all the love and support** We couldn't have made it this far without it.

HOME!!

I am so happy....we are HOME!!! Alyvia finished her antibiotics yesterday and the doctors approved her to come home!! The only way we could come home was to have oxygen for Alyvia and a monitor/alarm system (pulse oximeter)to monitor her breathing when she is sleeping. It's kind of a pain, but worth it to be home! Alyvia was asleep when we got here, but when she woke up she smiled so big and said HOME!! It is sooo great to finally be here!
The nurses had a little going away party for Alyvia, with chocolate cake and everything. We are going to miss our nurses...they were awesome. After almost 3 months of being at the hospital you would think I would be running out of there, but it was actually kind of sad saying good bye to everyone. We met so many amazing people. Livie had some great doctors, especially her neurosurgeon Dr. Kestle, he was so optimistic through all of this. Then the nurses...they are amazing at what they do, they took such great care of Alyvia. We are really going to miss them.

We are also going to miss the other awesome families we met at the hospital. I can't even describe to you the bond that we had with each other. We laughed and cried together. They were an awesome support to us.

We are home, but unfortunately we can't go out. Livie can't leave at all. (She is pretty much still on isolation!!) She is still contagious, but more importantly her lungs are really weak right now. Her immune system is down (if it even exists anymore! lol) She is weak and really prone to getting a bug or virus, which could be life threatening to her. Sadly, we are going to miss all the Christmas festivities and parties. ): But I gues it'll be okay because I have my baby home!!

wOo HoO!!

Alyvia is doing fantastic!! Her antibiotics for the spinal meningitis end tomorrow, so that means no more IV's!! (It took IV team 4 pokes to get her last IV in because her veins are so bad!) Her C-Diff is finally clearing up, and the Influenza isn't settling in her lungs....so Livie really is doing great. Her vision is also getting quite a bit better. She is so much more like her old little self, just in the things she says and does. It's been awesome to see her like
this. (:
The doctors are even talking about letting us go home this week!! IF all goes well. We are still concerned about Livie's breathing (or lack thereof!) I know CPR and I know how to use a bag and mask (which we'll be taking home with us) but hopefully I won't have to use it on Alyvia. Right now the doctors and nurses are working on a care plan that we can do at home, I am just so excited to think we might be able to go home!!

PreCious GirL

Yes, Alyvia does indeed have 2 chins!!

These past couple of days have been the best we've ever had here. Alyvia is still not 100% her self, but she is coming along great. Every day she is more and more like her old self. She is still on precautions because she still has C-Diff and Influenza, but the Influenza hasn't gotten any worse, so I think it is running it's course. It's just been so great to see Alyvia more like herself...even if it is 10 pounds bigger!! (;

hAppY dAy

Today has been a good day!! Alyvia's cough isn't bad, it's there, but as of right now it hasn't affected her lungs. So hopefully the Influenza will just run its course and be gone in a few days. Livie still has C-Diff pretty bad though. Whenever I change her diaper she just bleeds, its so sad.
Alyvia is talking and responding really well, today has been awesome!! She still gets agitated, and she can't see all the time, but sometimes she does see. Her vision still comes and goes. Today, though, when I would talk to her she would actually look into my eyes (for the first time in a long time) and talk back to me. Just something as little as that made my day.

Through all of this, Alyvia's brain does have damage from all the trauma. We didn't know how much of this would affect our Livie Bug, but she is definitely "in there" and she still has her cute little personality. She still has her agitated moments and crying spells, but she is doing so much better. She still can't crawl or walk yet, but she is a champ at sitting up. She is getting stronger and stronger. She responds now when I talk to her (not all the time, but most the time) and she loves singing. We still sing all the time. Livie still knows all the old songs she used to, and she has learned quite a few new ones. She has gotten to be quite the chatterbox. She has also gotten to be quite the eater....she has definitely put on some weight, she has got quite the chubby cheeks now!! A lot of it is from the steroids she has been on though. She's got the "steroid look" now, where she is bloated and swollen (especially in her face and tummy.) Good thing she is only 2 and can pull off those chubby little cheeks!! ;)
I know that I won't be taking home the same little girl I brought here, but at least I will get to take her home, as we have seen here, not all the children are fortunate enough to make it home. We are so grateful that Alyvia is doing as well as she is.

Influenza

Alyvia's cultures came back, her throat culture showed that she has Para Influenza. She hasn't had a fever, but the cold has moved to her chest and this morning she has a cough. Influenza is a virus (so it can't be treated with antibiotics, it just has to run its course.) The cough is in her lungs, but its a loose cough. Our biggest concern is this could settle in her lungs and cause viral pneumonia, so hopefully that won't happen.
The doctors are also still trying to figure out why Livie stops breathing. She is on some new medications to see if that will help. She is still on oxygen at night time and nap time. So right now we just have to wait for the influenza to run its course, and try to get this breathing thing under control....so we're going to be here for a while longer. And by then Alyvia should be good to go and we can go home and have Christmas!! (Well, that last part is MY plan anyways!! :)