I'm back!

Ashley and me


I'm back!! I went on a week long cruise with my sister. We had a great time, it was so nice to be in WARM weather! It was a really fun (and probably needed ;) vacation. I was really worried about leaving Alyvia (I have never left her and with everything that's happened I was worried how she'd do) She was in good hands, though, and she did great!
Now that I am home though, Livie is sick again! Bleh! She has C-Diff yet again (it is a constant battle with that C-Diff!) And she's had an ongoing fever, hopefully this is just from the C-Diff. So she's not feeling too hot, but her lungs sound great! She isn't wheezing and her oxygen is good.
I decided that I am just going to have to keep Livie indoors until it warms up around here (which could be a while!) She just seems to pick up every germ, I don't think her immune system is quite ready to be out and about yet.

Before I left, we had a nice, sunny day (pretty rare, I know!) So we took advantage of it and Livie played on her trampoline. She absolutely loved it! I couldn't get her to come back in the house, we even had to eat lunch on the tramp. She was a little hesitant at first (she hadn't been on the tramp since before the brain surgery...) but she remembered all her old "tricks" and showed them off for me! It was fun, Alyvia LOVED being outside in the nice weather.

Now if it'll just warm up and be summer already...!

Woah...catching some air!!

Good!!

Livie is doing a lot better! (: She's finally gotten rid of the fever and runny nose. She is breathing so much better now. (She wheezes just a little bit, but that's pretty good for Alyvia.) The steroid has worked really well, even her cough has gotten much better. Yay!

The Infant Toddler Program and Early Intervention have been working with Livie. (They come into the home and work with her, they provide therapy and preschool if she needs it. They evaluate her monthly to see where she is at mentally and physically.) She just had her last evaluation, she did really well. Especially compared to when we first got home. When we first got home from the hospital, Alyvia was not at all where she needed to be. She couldn't even walk, she couldn't see (her vision was just starting to come back) She didn't talk much, she just cried, a lot. It was really frustrating to finally be home, and realize that Livie didn't really know what home was.

More than anything, though, it was really hard knowing I had a normal, regular child and now I had a child who had suffered so much brain trauma and so many other complications that her brain was not working right, she was so out of it, and completely not herself. Everyonce in awhile I would get a glimpse of my Livie and I knew she was in there. She needed more time. Her brain needed more time to heal.

When we left the hospital, Livie's CT scans showed that Livie had suffered so much brain trauma that she had brain atrophy. It was really hard hearing that my little girl had brain trauma and damage to her brain. No one knew the extent of the damage, or what Livie would or would not be able to overcome.

After a while of being home though, it was like something finally healed in Livie's brain and she "woke up." She was my Livie Bug, she was back! She had the same personality, some things were a little different, but she was back and started making progress in leaps and bounds.

Like I said, Alyvia just had her last evaluation. She is where she needs to be for her age. She did not show signs of delay. It seems Livie's brain is working just fine. The coordinator gave me Livie's very first evaluation results along with this last one so I could compare....
I sat there and cried and cried. Livie has come such a long way. To know that she had sooo much brain truama, to now being a normal little two yr. old. To see where she came from and then to see where she is now.... Alyvia really is our miracle. I do not know what the future holds for us, but I am very thankful Livie is here and doing as well as she is.

Then: In the PICU when Alyvia was so sick. (She was still only 17 lbs, but she was SO swollen with crepitus - air in her tissues)

>Now: I think the picture speaks for itself

Since it's been so cold out lately, we've been trying to keep ourselves busy in the house....I got some paints out and Livie really loved it! (She even painted the table and chairs -good thing for washable paint!!)




Livie and Rachel (her second mom)

Livie loves Pat!

Update

I think I spoke too soon....Alyvia was doing alright, but then yesterday she got really sick and had a fever all day. She was having a really hard time breathing (I was so worried she was getting pneumonia.) We had to take her back to the pediatrician last night. He was worried about her lungs, so Livie had some chest X-rays to see what her lungs looked like.....
They looked good!! PHEW! I was SO relieved. She doesn't have any fluid in her lungs and the atalectisis (portion of lungs that has closed off) has even gotten better.
Because she is having such a hard time breathing though, she is starting a steroid, the albuterol treatments just weren't cutting it. I am not crazy about a steroid, but it's a low dose and if it helps her breathe than it's worth it.

The pediatrician thinks the most likely cause of the new fever is a viral infection on top of what she already has (RSV.) The doctor doesn't want Livie on antibiotics because of her long history with C-Diff.
Right now our biggest concern is Alyvia's lungs and making sure she is getting enough oxygen. As long as her lungs can hold up she'll be okay, and right now they are. (They just better keep holding up!! ;)

Feeling a little better

Alyvia is doing a little better. She hasn't had a fever and she is no longer gasping for air or panting really hard to breathe, she is still really wheezy and has a cough, but as long as she isn't fighting so hard to breathe, we're okay. (And she doesn't have blue lips, they are nice and pink now!)
We're going to take it easy until Livie feels better. We're also waiting for it to warm up around here, which could be a while considering it SNOWED today!! (Not a lot of snow, but still!)

As you can see in this picture, Alyvia is still sportin' the rain boots. (Yeah, I know Easter is over, but Livie really likes her Easter basket, it has become her new favorite toy!)

Once again it was nap time and Livie HAD to sleep with her boots on, I snuck in later and took them off. (Hopefully this doesn't become a daily ritual.)
SiLLY GiRl and her RaiN bOOts!!

Our friend Carson returned home to his Heavenly Father

Anchorage resident Carson Wallace Henrie, 2, died March 30, 2008, at his home surrounded by family
At 16 months, Carson was diagnosed with a brain tumor and flown to Primary Children's Medical Center. As he fought through the treatments, he touched the lives of all who knew him. Carson displayed amazing courage and had an enormous will to live.His family writes: "Carson taught us what is truly important in life and to appreciate the little things. By example, he taught us about patience, endurance, faith and love. He taught us to smile when life is hard and to fight back even harder. He taught us to have hope, don't give up and to continue believing in miracles. We've learned the preciousness of every second we have with our children. Though we will miss Carson terribly, we will be forever grateful we had the chance to know and love him. Carson has changed our lives and will remain in out hearts forever.


This little boy, like Alyvia, had a brain tumor. Carson's tumor was cancerous and he fought a long, courageous battle.
I will never forget Carson, my heart goes out to his family.

Reality Check

Livie saw the pediatrician today. He said it is very likely she has RSV, her lungs are just so damaged they're having a really hard time working against this virus. Her SAT's were borderline low (87-92) they should be a little higher. Her heart rate was pretty high. (Probably from working so hard to get oxygen to her body.) I am keeping a close eye on her. If her SAT's get any lower or she spikes another fever, than I have to take her back to the doctor. We really want to keep her out of the hospital. Our pediatrician has been so great with Livie and won't hospitalize her unless he has to.

It was just unexpected because Alyvia looks so good and she's done so well since we've been home. She has made soooo much progress, but I had a reality check today,
Livie's lungs are still damaged and weak.

I'm keeping my fingers and toes crossed and praying that she'll beat this little set back like she has the others. (:

Girl Time

Some of us girls went to Utah this last weekend. We went to Park city and we went shopping. It was a big day, but we had fun and I found lots of cute stuff for Livie. She does not fit into ANY of her old clothes....she's doubled her size in the last few months! ;)
This is the first time Livie's been to Utah and not gone to Primary's for appointments. It was quite nice driving right on past the hospital's exit!

Livie and her "Granny Goose"


I wanted to buy some rubber boots for Alyvia to wear around on the farm. We found these and Livie LOVED them! She had the wear them the rest of day.....and night! When it was time for bed she wanted to wear the boots, she cried and cried. Doing what any other sleep deprived mom would do....I let her, she wore them to bed.

She has been wearing them ever since. (Seriously, she has them on right now)
(Yeah, they are on the wrong feet :)

Lungs

Alyvia is sick, she just got a cold, but it has gone to her lungs. She is having a really hard time breathing and catching her breath. She's doing breathing treatments and we have an appt with her pediatrician to make sure her lungs don't have fluid in them.
I am just really paranoid about her getting ARDS (lung disease) again. It happened SO fast. One minute she was recovering from brain surgery, the next she was in the PICU on life support because her lungs were completely full of fluid.

So I am keeping a close eye on her and we'll be laying low for awhile.

Easter Sunday

(Yes, that is a Dora tattoo on her arm, she wanted to put it on her cheek!)

Alyvia woke up Easter morning and found her Easter basket. Then she got to find some eggs. She was running around the house giggling, she was so excited. It was so fun to watch (especially since Christmas hadn't been very fun, she was still struggling with the brain trauma....and wasn't herself at all.)

The Easter bunny got Livie an Easter dress....and she finally got to go to church!! (Well, sacrament meeting.) She hasn't been to church in a loooong time (over 6 months! Pretty sure she is on the inactive list! ;) So it was really good to finally take her out and bring her to church.(She still can't go to nursery....too many germs. We'll just take it one step at a time.)

We had a good Easter, and are really happy Livie was here to celebrate it with us.

Mom and Livie

The Easter bunny found our house (:

Some of the girls

div> Showing off their matching Dora tatts!

She loves her Uncle Caleb...I love how they have the same expression!

Checking out the new puppies

Finding Easter eggs

She needed a little help

Easter egg hunt

Getting ready to go find Easter eggs with Griffin!

Alyvia went to the Primary's Easter egg hunt. It was pretty cold (when isn't it cold here?! haha) but she loved finding the eggs. It was the first time she's really been outside. She was lovin it! (I was a little hesitant since it was cold, but Livie was dressed warm and she had so much fun!)

Gotta find more eggs!

Together forever

I am so happy for the Dance family. They were able to go to the temple and be sealed together as a family. I had never been to a sealing before, it was really neat. I am so glad I could be there to witness such a special occasion.

Yay Dance family! I love you guys!
Griffin and Lexi

5 Things about Alyvia

Alyvia's been tagged!

1) Alyvia only calls her Dad by his first name, Hutch. She doesn't call him "Dad." Hutch was her very first word and it stuck! She knows that Hutch is her dad, she just likes to call him Hutch or Hutchie!

2) Her favorite color is pink!

3) Alyvia's middle name is Jo. She is named after her Grandpa, Joe.

4) Livie is a typical girl....she LOVES purses! She never leaves home without hers. (She won't even go get the mail without her purse in hand!)

5) When she was born she weighed in at 7 lbs & 7 oz. (People always ask me how much she weighed when they find out her medical history.) Livie was a healthy baby until she turned a year old, then she started throwing up and getting sick. This was all related to the tumor growing and putting pressure on her brain.

This sounds cheesy, but Alyvia really is the light of my life. I never realized you could love something so, so much....until I became a mother.

She was saying "Cheeeeese!"

Somebody got into the chocolate!!

Now we tag: Ashlee Cook, Lexi and Griffin Dance, Corgin Simonson, Julia Joy Soderquist, Naomi Hansen, Bentley Stevens, Kinsey Rees and Noelle's Emrie....pretty much anyone who wants to do it!

Mission call

My little bro got his mission call.....

Logan is going to Cuernavaca, Mexico.

We are all really excited for him. We went out to dinner to celebrate and it was one of the few times Livie's been out. She loved it!! She had a great time running around like a wild girl which was really nice to see.

We had a really fun time with the fam.


Sisters <3 href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKbaKCBNRheEYvLBaRfci5MFwZbbZew621brt_Cp7g56hsgCa3bSssmTwOiuyteIZpcMWHXfXDh_USlqp9IkkdhFoDHkgA-rpmESRGRngLHXOsdtmqQzB8FoN2vVGEgR207dqofQ5Ct1B2/s1600-h/Logan's+mission+call+034.JPG">Livie BugThe Phillips family
Alyvia and PapaLogan and Caleb

This is how Caleb eats his jello!!

ABC tag

Tagged by Jenny

A - Attached or single? Attached...to quite a few people actually! (;

B - Best friends? Rachel, Michele, Summer, my sisters, and Kami.

C - Cake or pie? Pie

D - Day of choice? I like Fridays

E - Essential Items? Chapstick and my cell phone

F- Favorite clothing item? Whatever's comfy

G - Greatest ambition in life? To be a good person, to have a healthy family (Alyvia) and to be happy.

H- Habits? Going to bed late

I - Indulgence? Sleeping in or reading a good book

J - Jan. or July? I love summer, so July all the way

K - Kids? Livie Jo, she is 2 1/2

L - Life isn't complete without? People who love you and treat you well.

M - Movie? I love the Bourne series, Without a Paddle.

N - Number of bros and sis? 3 bros and 2 sisters

O - Oranges or apples? Both, I like fruit

P - Phobia or fear? Finding another tumor, loosing my child or someone I love

Q - Quote? "If you tell the truth you don't have to remember anything" -Mark Twain
I have learned that honesty is actually pretty rare.

R - Reason to smile? Alyvia!! She is our little miracle.

S- Season of choice? SUMMER!!! I love camping and boating!

T - TV shows? I missed a lot of them I used to watch from being at the hospital so long, but I just started watching "Keeping up with the Kardashians," I don't know why, but I love it!

U - Unknown fact about me? My hair is naturally really curly and I broke 7 bones (in 15 different places all in one very bad accident)

V - Vegetable? Actually I really like all vegetables.

W - Worst habit? I tend to always be late

X - ray or ultrasound? Whichever

Y - Your favorite food? Everything!! Seriously, there's not too much I don't eat. I like meat...steak and burgers. I also like Italian.

Z - Zodiac sign? Libra!!

Now I tag Rhetts mom, Pam, Mikelle, Vanae, Tiffany, Jen King and Teresa and Misty.

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/