De~Stressing

Oh my, what a terrible day.

I'm mentally exhausted, frustrated.

I keep looking at the big picture. And when I do that it is overwhelming.

Don't you think that "anyone" who was to walk in my shoes would be a little overwhelmed?

Seriously, it's been the year from hell.

Too much to deal with, first Chris' immigration stuff all is messed up, 2 weeks after a major let down with that, Alexis was diagnosed with Scoliosis. Then 3 weeks later, she was diagnosed with Chiari and Syringomyelia. 8 weeks after brain surgery, she get Scarlet fever.
In October, Chris tells me that he has a mass, and we find out it is cancer.

Now back to immigration....passport crap, and I'm doing my best to work it all out. And the darn printer breaks on me.
I bought a new one, and install it.
For me, this technical stuff comes like second nature. USUALLY!
However, today, it took me 9 HOURS to get it working.

I thought I was going to pull my hair out!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The only one in this house willing to help me was my 9 yr old. Bless her little heart. She is so sweet.

UGH ~ ~ ~
Time to de~stress...where's the wine???????

Thanksgiving day

Thanksgiving day~~

Today, I had so much to be thankful for. My little girl survived having a craniectomy, laminectomy, and duraplasty.

She has a huge scar on her head. And the skull was removed.
She is living with pain on a regular basis. But making it through it with her head held high. And always finding ways to make others smile.

My husband is currently fighting cancer. And hopefully winning. He will be starting the radiation in a few days.

My father is battling Parkinsons, and alzheimers. It is difficult to see someone who has been so incredibly strong his whole life.
Both of my parents have been amazingly strong people, well accomplished in their lives.

And now to see how difficult it is for them. Seeing my dad struggle to walk. Trying to remember things. And seeing my mom's frustration and concern for him.

I do my best to help my parents out any way that I can.

God Bless them. They were there for me, adopted me when Janice gave me up. They have been there my whole life.

November is National Adoption month. Yep, I was adopted.

I have since found my birth mother and birth father. The relationship with my birth father is great. He is amazing, and his wife, Mama Cindy. I am so thankful that I have them in my life.

They are far away, and we don't get to see each other as much as I'd like, but they are amazing and stay in touch.

So random, I have lots on my mind, and most of the time when I am running around doing errands I am thinking of the things that I want to share.
Then when I sit down to write, nothing comes out.

School is going well with Alexis. She is thriving this year. There has been a teacher that said to her, Alexis, you are the only one who is being a good kid and listening. Why can't the others be like you.

I'm so proud of her. She is my hero, my angel! She makes me smile & she is endlessly making me laugh.

She pays attention while I am driving. And she is a little back seat driver. LOL
I'll be heading somewhere, and she will blurt out; "Come on, aren't they in the fast lane?"
I said how do you know that? She said, well I thought the fast lane was on the left and the slow lane is on the right side. (hehehe)

I love my family very much. But tonight, I realized how little they know about Alexis' condition.
I think my sister probably understands the most.
My mom try's to understand, but it's complicated for her. She thought Alexis had "TIARI"
They think that Alexis is "CURED". GOD I WISH THIS every day.

Tonight, my brother said, she looks fine. They don't really ask much. And I don't think they really want to learn about it. And that is ok.

It's taken me a long time to be able to absorb all of this. I don't expect them to learn it all.

I share what I want on my pages, and who ever wants to read them, and who ever is interested in it, is welcome to read and ask questions if they want.

FYI~ ~ ~ I've mentioned in the past that we will be heading to the Philippines to see Chris' family.
It would only be temporary. A trip. We won't be moving there.

We have to go to sign papers for Chris to be able to get his son here. They need a father or mother to sign the papers.
Also, I haven't met his family yet.

So, hopefully we will be able to come back with his son.

I would be over joyed. I always wanted a BIG family. The more the merrier. Not so big on babies, but I love kids.
Speaking of kids, I'd love to have a child with Chris, but we aren't sure. It's so scary.

I'm almost certain that I have Chiari also. And Chris is fighting Cancer & going through radiation next week.
I'm not getting any younger & I've already lost one.

However, I'd love to have his child. I'm sure the baby would be so beautiful. Native American and Philippine, gorgeous.

I know God has His plan for us, and I will do my best to live the life that He wants us to have.

November 2011 (vent)

I originally was going to write this with the post below, but I wrote them separately.

Why is it that some people think that they need to share their every opinion? Even if it isn't nice?

I have tons of friends. And I know a ton of people. And I share on the blog and the CaringBridge to share with all the family and friends that we have all over the world.
I have several of my best friends or people who I am close with. And I trust them to be able to share anything with me.
And I know if they were to tell me something, that it would be because they care and have concern for me.

But when people are down right hurtful, I don't like that.

It's a shame that some people just have no common sense.

All I have to say is read my post below. You can see that my family has had a difficult year.

We live in a small home, but it is mine, it is paid for. Yes, we have a lot of stuff, combining 3 people's things into a small living space.
We are a happy family despite all we have been through. Both my cars are paid for, everything I own is mine and I have purchased. I don't have credit cards, I have worked and paid for everything that is in our home!
I was a single mother for 7 years. And at times was working 3 jobs...yes round the clock trying to make enough to live on for my daughter and me.

Why do people feel they need to say hurtful things????

I had that encounter last spring with that person who said, Alexis isn't really that sick.
HA, what do you know? Does that person think this sounded like "FUN" to go thru?
That still spites me. And angers me.
I know it shouldn't and I know she clearly doesn't have a heart. Does it surprise you that she has children.
You'd think someone with a child would understand.

On facebook, I read people posting things like, my poor baby has a cold or the flu.
Normal stuff.

Well when you have a "Chronically" Ill child. The normal stuff gets bigger. And worse.
Nothing is normal about chronically ill children. And it isn't fun to see them suffering. Not one bit!

Why do people feel that they need to say whatever they are thinking????
Not helpful, just hurtful. For future, if you just want to be mean and think it is funny, don't waste your time with me.
Before "judging" Me, and my family or living space, why don't you take a look at yourself.
God is my judge. He is the only one who is perfect, and can judge me.
Just had to vent a little!

Looking back at 2011~

It all began with Alexis being diagnosed with Scoliosis. This was in January 2011.

Several people had to openly share that they thought that I was doing the wrong thing with my daughter.

They could see that I was researching like crazy. And had to tell me, Julie, it is "just" scoliosis! "Millions" of people have scoliosis, what makes your daughter's case any worse?

The fact that I AM HER MOTHER! And as a mother, I KNEW something wasn't right. It was TOO extreme for a little girl who just turned 8 years old.

She looked like the healthiest little girl ever. The X-Rays were showing something else.
To me, it looked like something was attacking Alexis from the "Inside" out!

And guess what......I was correct.

I knew there was something seriously wrong with Alexis. If I had just listened to these people that kept telling me that I was wrong, Alexis' brain would be compressing on her spine. And she would eventually be paralyzed.

I would have to shame on me, if I was to just sit back and listen to everyone else.
I followed my instinct, and got Alexis the help that she needed.

So, again, in January Alexis was diagnosed with Scoliosis. February, we met Shriner's for the first time, and they told us her X-rays was worse than the one's in January.
They told us we needed to get her checked for something worse, but didn't tell us.

After a few weeks, the MRI came back, and we were waiting for the Neuro Dr. to come back from vacation to tell us the results.

At this time, I had done my research and was about 90% sure she had Chiari Malformation of the brain and Syringomyelia.

People kept telling me that if it was urgent, they would have had Alexis see a different Dr.
BUT, they didn't know that there is only 2 Dr.'s that deal with this in our area. Also, we needed a "Ped's" Dr. and he was the one for this.

So, February 18th was MRI day, results sort of came back a week later, but he wouldn't tell us a whole lot of info.

Actually it was the secretary at Shriner's that told me that they had Alexis scheduled for the Neuro on March 8th.
I burst into tears. She said, I'm sorry, I thought you knew. I said, is it Chiari?

So, March 8th we met the Dr. He was appalled that Alexis was able to function with over HALF of her spinal cord filled with this cyst. It was fully filled. One of the largest he's seen in 14 years.

The only reason we had to wait for surgery was for the insurance to approve it.
They had Alexis in brain surgery within 6 days.

It was heart-wrenching seeing my baby girl suffering. I remember everything. Sitting and waiting, feeling sick to my stomach.

Then the Dr. coming out to tell me what happened. He first said, Alexis made it through ok.
And proceeded to tell me what they did. It was the longest 5 hours ever.

We walked back to the recovery. And the nurse was able to have Alexis move for us. She couldn't talk. But she slightly opened her eyes for a brief second.

I wanted to do this all for her but I couldn't. She was lying there so helpless. We all got to tell her we love her. Chris held her hand and then had to leave to go back to work.
Curt & I stayed with her.

She was settled in Ped's ICU for a couple days. Then off to the oncology unit.

I remember thinking, would I ever see my normal little girl again? The longest week ever.
She was in excruciating pain. The worst imaginable. My baby girl couldn't handle light, sounds, tv, anything.
She wasn't eating. She didn't eat for 12 days straight.

Finally after a week, she got to go home.

Another new chapter, we had Shriner's appt.'s set up. Fittings for her new brace.

After her surgery, Alexis' had a concussion not even a month after surgery.

At 8 weeks post surgery, Alexis came down with Scarlet Fever. YIKES this was terrible!!

I was at a breaking point here. She was as sick as she was in the ICU or WORSE.
But we were at home. And I was my little girls care giver.

It was scary. And I was doing my best to help her get better.

She was in and out of the hospital over 10 time with that scarlet fever. People kept telling me their thoughts, and that she would be better within a week or less.
UH, NO, Alexis had this for at least a month.

After July she slowly started to improve. She had to get another MRI in July. Then prepare for school.

In August, she got another concussion.

This just shows that her little head is very fragile! A simple bump on the head for the normal person is nothing, for Alexis who has a piece of her skull gone, can put her in the hospital.
People kept telling me differently with this, too. Telling me that I am over protective. Or that it wouldn't affect her that bad.

So, after getting through all this, the night of Alexis' 9th birthday, my husband informed me he has had a lump growing for about a year.

Back to the internet that night, I researched all I could. It was a Saturday night, so we couldn't do much until Monday.

On Monday, we got into the Dr. And the Dr. got Chris into the hospital IMMEDIATELY to get ultrasound.

Talk about a whirlwind, we saw the Urologist the next day, and he said he was almost certain it was cancer.

The 3rd week, Chris had surgery. And has survived seminoma cancer. He will be starting radiation soon.

This is our year in a small bit.

Strength. . . . .

Chris went through surgery well.  It has been 9 days.  

Once again, we are going through so many changes.  We have this whole week that has been laid back for the most part.  I've been busy with Alexis.  And also trying to keep up on the things that need to be done around the house.  
Preparing for winter, etc. 

I realize that I like being busier rather than not.   I've had a little bit of down time this week...and seems like I am so tired, been having some headaches and body pain.  

When I am busy and on the go, I don't have time to think.  I just Go.  :)

Thanksgiving is coming up.  
I have so much to be thankful for, here are things that I am thankful for:

Blessed & Thankful:
 
~to have God guiding us even when we are scared
~ to have my daughter alive, happy and joyful.
~to have my husband in my life!
~to have people that are caring, kind and thoughtful to us in our lives!

Battle's and 9 yr old sweetness....

New battle's on our hands.  I'm feeling scared.  Mostly because of the unknown.  It's not just one thing, but there is so much unknown right now.  

And I feel very uneasy.

Everything is on hold right now...and I'm trying to think of what the next step needs to be.  

Chris is wanting to go to the Philippine's for his care.  I understand that he would want to be with his family.  And they want to be with him.  I'm sure they all are very concerned and worried as much as we are. 

However, I would want to be with him through all of this.  It would be a foreign country to me, and not my native language. 
What if something happens to him???

Everything is done differently there.  And I've been trying to explain that to my parents.  I just don't know what to do.  

His health is the MOST important thing.  Something needs to be done, and the SOONER the better.  I'm almost panicking!  He wants to put off the Ct and Xrays so we can do it down in the Philippine's.  I just don't know if it is spreading or how bad it is yet.  I just know that the Dr. made it clear that they need to remove it ASAP!

I would like to bring Alexis, but she is worried about going there in the heat.  Heat hits her differently.  She's never been away from me for more than a night. 

But I don't think she realizes that I won't be able to fly home just like that.  

Then depending on the type of cancer it is, who knows what would happen next.  He may require more help.  And maybe Chemo.

There is just so much to consider.  I'd need to apply for a passport...which could take several weeks.  OR....if I drive to Seattle I could get it in a day.  BUT, that would be 10 hours of driving for me. 

I will not be working here in the next couple of weeks...and I am assuming, Chris won't either.   So, I am terrified of that, too. 

Oh my gosh....I'm so upset.  I can't even think.  

I want to share a card that Alexis, my 9 year old daughter made for Chris.  

It reads:
Dear Chris,

Me, mom and Curt are thinking of you.  Just believe that you can do it and it will never bring you down.

I know it is scary but when  you have all your family then you won't feel so scared.  We love you!  October 14, 2011

Alexis & Julie  (this was from her, but she signed my name :))

I thought this was so sweet that she made this for him.    She keeps saying that she will be there for him and telling him that she could hold his hand while they are putting the needle's in his arm.

HAPPY BIRTHDAY ALEXIS!!! Today you are 9 years old.

Nine years ago October 8th 2002, I gave birth to the most amazing little girl in the world. 
Her name is Alexis Suzanne.  And she is the light of my life.  

It wasn't easy, my pregnancy was difficult.  And the labor was even more difficult.  But that is alright little sweetie.   Mommy had placental abruption.  And the day we went into the hospital, I had been suffering from a rare pregnancy rash called "PUPS".  It looks like measles and is terribly itchy.  This is why they admitted us, and induced me.  

At 3 months along in the pregnancy, they told me that my placenta was tearing away from the uterus.  So, I was on bed rest for a month.  Then on restriction.  By the time I gave birth, the placenta didn't deliver.  So, mommy was sent into surgery.  They had to remove the placenta.  And Mommy was hemorrhaging very bad.  I believe it was about midnight when I was out of surgery. 
This is when your daddy told me that you had a lot of birth marks all over your face and head. 
I was concerned for you.  The Dr. reassured us that you were alright.  And that the birth marks would hopefully fade. 
You were so beautiful to me in every way!
You make my life complete.  And you are worth everything to me. 

Alexis dear, you have had the most difficult year, yet.  And I am sorry.  Mommy would gladly step into your shoes if I could.  I would take every blood draw, MRI, surgery, all of that if I could for you.  
I know you have been scared and this hasn't been easy.  

Mommy is so proud of you, Alexis.  You are one of the bravest people that I know.  



I know at times, it is hard to be brave and strong.  But you are doing it....even when you don't realize it, you are so strong. 
You make me so proud.   And I love you with all my heart.  


Alexis, you came into this world 5 weeks early.  You surprised everyone with your presence.  They were prepared to send you off to Spokane, WA to the Hospital there since you were so early.  But, you were strong even as a baby.  You were born a fighter!  

You were 6 pounds.   Only 18" long.  And so tiny, but adorable!   And you had a full head of Black curly hair.  And you were amazingly strong.  


Alexis, you captured people's hearts from the second you were conceived.  Mommy was in labor from October 6th ~ 8th.    We were in the hospital for a week. 
If I remember right, there were at least 40 people that came to the hospital while I was in labor.  

We took 2 pickup loads of gifts home for you.  Thankfully, daddy and papa had two big pickups.  

You were jaundice the first week you came home.  And had to go back to the hospital.  But you were alright.  

The 2nd week, mommy became very sick.  I ended up in the hospital and the Dr.'s didn't know what was wrong with me. 
So, together, you and I went to the hospital.  We were there for a week.  
Mommy ended up having an emergency surgery after a week of pain and not knowing what was wrong.  
We found out that the lining in my stomach area had become infected.  And they removed part of that, part of my intestine, and my appendix.  

So, little Alexis, you and I have been through so much and together we shall overcome things that are scary.  We will always come through things with our heads held high.  

You are my hero, Alexis and I love you with all my heart. 


Mommy

The circle in middle is her spinal cord and the SYRINX.  It was 10.9 mm width of spinal cord.

The white stuff in the middle of spinal cord is the SYRINX filling her spinal cord.  :(

The SYRINX is curving her spinal cord

The SYRINX is located from C3 ~ T10 which means it is extending from below the brainstem all the way into the Thoracic part of her spine.  It is HUGE!

Alexis and her best friends! At Sunjeong's going away party :(

August 9th 2011 Shriner's Visit~

Alexis is almost 9 years old and we were at Shriner's Hospital again.  She has her smile on!  YAY!

Blog life

I have just opened this new site in hopes of sharing with just the closest people that I care about!

My daughter will be 20 weeks post op on the 14th. She is fighting Chiari Malformation and Syringomyelia.
She will be 9 in October. And she is amazing!