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!