Feeling better, but more seizures

Livie hadn't seen her Gramma for awhile so she was excited to finally see her

We are finally feeling better, yay! Livie still has a cough, but it never got really bad, however she did stop breathing once in the middle of the night because she got so congested she just had a hard time breathing. (Good thing Alyvia still has a pulse ox and I am a light sleeper.)

Livie's lungs have been really wheezy and crackly (from this flu/cold I'm sure) so she's had to do more breathing treatments, but she is definitely feeling better because she's been running around like a crazy girl! I have to make her take a break sometimes because she gets so wheezy I'm afraid she'll stop breathing.

Alyvia was doing really well and hadn't had any seizures for a while (the doctor still thinks it's seizures that trigger Livie to shake and then stop breathing and then to pass out) then yesterday it happened 3 times! Sometimes during the seizures she barely shakes and then sometimes they are so bad that I have to lay her on the bed because I am afraid she is going to hurt herself she is convulsing so bad. Yesterday they were really bad one's, she had a hard time coming to and she had a hard time walking afterwards. Since we've upped her seizure medication when Livie passes out she usually comes right to. It usually only lasts 30 seconds instead of minutes. So that's better, but I wish we could just get the seizures under control. We tried giving her iron supplements to see if that would help....but that didn't go over so well. We are supposed to be talking to Livie's neurologist to see what he wants to do....

Other than that, Livie is still doing well. She is a busy little thing, and I can't wait for the wheather to warm up so I can take her outside!!

We were playing hide-and-seek and Alyvia was hiding....hmmm where could she be
There she is!!

In honor of Ian

Ian's family is making and gathering different projects to donate to Primary's Children's Medical Center and to the Ronald McDonald house in honor of Ian. I think it is a wonderful idea. While we were at Primary's I was amazed at how much the hospital caters to the children. They were always giving stuffed animals, toys, blankets, books and more to the children there. It was nice that Livie was able to get fun things while being in the hospital.

We also stayed many times at the Ronald McDonald house. Especially when Livie was in the PICU, the hospital only has a few sleep rooms for the parents and they filled up fast. It was really nice for us to be able to stay at the Ronald McDonald house. The RMH is possible because of donations; food, toys, money, everything is donated.

We too, are so thankful to all of the kind people that donated or gave to help us out and other families going through difficult situations.
If anyone would like to join or help in any way here is some more info: http://emilyandian.blogspot.com/

SICK

We are all sick! Yuck! We caught that nasty bug that's been going around. (Well, Hutch caught it and gave it to us...dang it.) Livie has had a fever for the past 2 days. Today, though, it hasn't gotten above 99. Livie's pediatrician said that where this flu bug is a virus, it can't really be treated with antibiotics, we just need to let it run it's course. We are just hoping that this virus doesn't affect Livie's lungs too much, or that could be a bad thing.
So for now we are laying low and getting lots of rest. (And it's an excuse to stay in our jammies all day long! ;)
Oh, and Livie has already had influenza once, and yes, she did have her flu shot. Apparently this year's flu shot hasn't been that proactive.


I felt bad Livie's been so sick, so I gave her a "fun dip" (you know the lic-a-stix candy, I didn't even know they still existed.) She loved it.

Tag

I was tagged again...

10 years ago:
I believe I was just starting my freshman year of high school baby! I was loving it, loving the boys ;) and cheering was my life. And I also might have given my dad a few grays hairs....just a few.

5 places I've lived:
Logan UT, Blackfoot ID, Rexburg ID, Boise ID, and SLC UT

5 jobs I've had:
1.FEEDING CALVES every day(the job I had the from the time I was 12 until I went to college.) 2.Receptionist. 3.Waitress (okay, so I worked at Sonic, and yes I had to wear the roller skates...and I do NOT skate well!) 4. BMH admissions
5. My current job, the hardest and best at the same time...being a MOMMY! I love it.

10 years from now: I want to be truly happy. I have met some of the most extraordinary people who do not have a lot, but they are truly happy. And because they are truly happy, they have it all.
I want Alyvia to be healthy and well. For my future children to have good health. Good health is one of the best blessings we can have.

Our Week

We have had quite a busy week. Alyvia is officially potty trained!! Wa-hoo! She's actually been wearing panties for the past couple of weeks, but we've had a really busy past week and she didn't have any accidents, not even when we were traveling in the car--knock on wood!)

Livie also had a play date. We went to Katy and Madie's house and Alyvia loved it. Madeline is close to Livie's age, and they played great together. Alyvia did really well, (she did get a little tired, probably from running around so much) but she is already asking when she can play with Madie again! (:
Livie hasn't been around kids her own age in a long time, so I was a little worried how she'd interact, but she did just fine. In fact, Livie gets to start a play group (Early Intervention) pretty soon so she can have some child interaction. I think it'll be great for her. Especailly since she is an only child.

Hutch has been REALLY sick (along with everyone else it seems) so we are trying super hard to keep Livie healthy. Hopefully she does not catch this nasty bug thats going around...bleh!

And lastly, my child has reached that point in age which I've heard others refer to as "the terrible two's!" ;) Livie is very independant now. She gets to decide what she wants to wear, eat, ect. Our day today was something like this: Alyvia gets up and decides she just doesn't like any of the clothes she owns and tells me she just wants to be naked. I of course say No, then Livie proceeds to take all her clothes off anyway. All of them. I finally convince her to at least wear her panties. I then fix her favorite bowl of cereal, and Livie says, "No, I don't like that mom." She ate it yesterday, and the day before that, but whatever. So I make her something else. (she didn't like it either.) Then it's potty time. I take her to her choice of potty (she has 2) and of course she doesn't like either one of them. She likes my bathroom with the big toliet. So I let her use it, and she fell in! It didn't even phase her, she did her duty and was off playing with her toys. Naked.
I've heard this is normal behavior for a 2 1/2 year old. So I think we're doing alright.
Alyvia has this new found independance and is loving it, maybe a little too much, haha. She makes me laugh everyday with the things she says and does. She has got so much personality! As stressfull as it can sometimes be, I really do love being a mom.

WARNING: This is just a warning to anyone who might stop by our house, there is a very good chance my child will be running around buck naked. (;


Alyvia's "big girl Dora panties!"
What a cute bum!! Cheese!

Valentines

Alyvia got some ballons for Valentines Day and she was loving them, she packed them all over the house!


She was trying not to drop her teddy bear and hold onto the balloons at the same time



It's hard to believe that 2 months ago Livie couldn't walk. She is running all over the place now!

We've been tagged

We've been tagged. You are suppposed to list 7 facts about yourself...and since this blog is mostly about Alyvia I am going to list 7 things about her too.
Here we go....

Megan
1. I absolutely love summer, I LOVE camping and boating. I also like fishing and just being outdoors. I love when it's warm enough to jump on the trampoline and sleep overnight on it.

2. I love fashion. For as long as I can remember I have loved clothes and jewelry, and just shopping in general. I like purses and shoes, I like getting dressed up. It's just who I am. However, I am quite the bargain shopper, I very rarely pay full price for something. (Really, I think Rachel and I are the thriftiest shoppers around!)

3. Biggest misconception about me: Because I like fashion and shopping, people assume I am prissy...NOT true. I grew up on a farm. I had to feed calves every single day and work on the farm. My dad made sure I knew what hard work was, manure was a part of my every day life. In fact, some of my fondest memories growing up are rounding up cows with my dad and checking the cows during calving season (I still go check cows with him.) I guess I really am a country farm girl at heart.

4. I have a lot of SCARS!! I was in a really bad car accident 1 1/2 years ago. In addition to breaking 7 bones the glass did quite a number to my arm and back. The glass also cut my face/eye up pretty bad. I had to have 2 reconstructive surgeries to repair the damage done to my face/eye. My scars used to really bother me, but not anymore. They are just a part of me.

5. I love hot baths! I rarely shower, bathing is my thing.

6. I also like to READ! I seriously read everything. I read books from the Twilight series, to Ann Rule, to National Geographic, to People magazine.

7. I have the greatest family ever. I have been blessed to be a part of such a large, loving extended family. Cousins, aunts, Grandma's....I love em' all.


Livie bug
1. Alyvia loves Dora the Explorer, I mean LOVES Dora.

2. Livie also really loves ranch. She would dip her cereal in it if she could.

3. She has got the smallest feet! She is finally in a toddler size 5 now. She just has little feet.

4. Alyvia is a night owl. She always has been. She never goes to bed before 10:30 PM, but she does sleep in, which is nice since Mom is not a morning person.

5. Livie also has quite a few scars from everything that she went through in the hospital. Someone once told me that Livie's scars were "scars of strength." I agree.

6. Along with the usual nursery rhymes she sings... Alyvia loves the Avril Lavigne song, "I don't like your girlfriend." She blares it at the top of her lungs. I am not sure where she picked this up, it's not the typical toddler song, but she loves it!

7. Alyvia's got a lot of spunk! She loves pink and princesses, but she also loves snakes and motorcycles. She makes me smile every single day, and has got quite the personality. I sure am lucky I get to be her
mom.
Now I tag....Summer, Jenny, Mikelle, Stef, and Shelley, I want to know 7 things about you guys!

Just a little update

I found her like this...

Alyvia had a flare up of C-Diff this past week....Yuck! I hate C-Diff, and I am pretty sure Livie hates it too! C-Diff is so hard to get rid of!! Luckily, we got it under control again. Antibiotics don't seem to help at all, but we found an awesome pro-bacteria that works really well.
We also got the lab work results back from when Livie was at Primary's and her iron is pretty low. (Which could be from a couple things: being so sick, C-Diff, having so many blood transfusions...)So we are starting Livie on an iron supplement. Alyvia's breathing episodes have gotten better, but she still passes out a few times a week, the doctor thinks this is happening because Livie's iron is so low....I guess we'll find out.
Overall, Livie is still doing great! She was quite cranky when she had that C-Diff flare up, not that I can blame her, but she is finally starting to sleep better at night, and her "seizures" are under control. She is also walking just about like normal and her "roid swelling" is finally going down...although she still has a double chin!! (:

Livie and her Occupational Therapist

More OT


What can I say, she's my little Thug!

Doing pretty good

Love her to pieces!!

Alyvia is still doing pretty good. She still has some issues with her breathing, but the siezure medication seems to help with that. She's been a little more agitated this week (we've had to give her Ativan.)
Livie's lungs have also been really wheezy. I don't know if it's because she's running and moving around a lot more, she just gets so wheezy she has to take a break and sit down because I am afraid she'll stop breathing. (I talked to the Dr about it today and we are going to try a different asthma treatment for her to see if it'll help.) Alyvia had asthma (bronchial spasms) in the PICU when her lungs got so sick, but she never had asthma before all this happened. The doctors said that because of the ARDS (lung disease) her lungs will never be really great, she has so much scar tissue (and a little fluid still in them) but her lungs will grow until she's 8 years old, so that will help. She'll get some healthy new lung tissue as they grow. So for now, Livie has to take it a little easy, her lungs are still pretty weak....Which is why she still can't go out. We've had a few visitors, but Alyvia's still not ready to go out. (Sometimes we put her in the car and go for a drive though, just to get her out the house--okay, and Mom too!) So until the weather warms up, we're just hanging out at home.

Livie and "Hutchie"
She closed the door and got her nightgown stuck!


Silly girl!!

Charlie Cooper

I wanted to post about this little guy. Charlie is in the PICU at Primary Children's. He has Pneumoccocal Meningits. He is only 8 months old and having the fight of his life right now. I have never met him or his parents, but Charlie has really touched my heart. Charlie's health problems are so similar to what Alyvia went through. In fact, when I read through his blog it was like having deja vu. I cried and cried because it hit so close to home. I can really relate to what this family is going through.
Please pray for little Charlie.
I know that prayers helped save Alyvia's life....


If you would like to look at Charlie's blog it is: charliecooperjackjack.blogspot.com

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!