My Dear Sweet Grandmother

Today my grandmother returned home to her Father in Heaven.  She had been in a light coma and had been running a fever off and on.  She is able to be with my grandfather and my mother.  She lead by example and was the most loving and caring person.  My grandma was a woman of great faith, service and love.  She dedicated her life to her children, grandchildren and her church callings.  I loved spending the night at her house with her game nights and wonderful breakfasts who wouldn't love it.  I bet the reunion with my grandfather and my mother was a most amazing sight to see.  I would have loved to have been a bystander to see that.  We love you, Grandma.  Thank you for your wonderful example and faith.  You will be missed by all.

This picture was the most recent...February 2009

This was in August of 2008 for Cameron and Alice's wedding.

This was in April of 2008...

This was in September of 2006...

I am home...

So, I know you are probably all wondering what the heck is going on.  If you aren't then you don't need to keep reading.  This is also for journal purposes as well.  So I had a spinal tap on the 8th of August.  I was feeling really anxious about this one because I had a horrible experience in March with my first one.  Well, I was really weak going in to the spinal, but things just went down from there.  Not so bad that I couldn't deal with it, but enough that I saw a huge difference.  It wasn't painful at all. In fact, I didn't feel a thing.  But when Sunday came around, I was so incredibly dizzy that I could not do very much.  I was seeing double, triple, quadruaple vision.  It was horrible.  I called my doctor on Monday and he said to call him if it got worse.  It didn't get any worse, but I got a call from his office on Tuesday saying that he couldn't get me in until Sept. 2nd.  This just wasn't going to work for me.  I have my doctors cell phone number so I called that and he asked me some questions on how I felt and then decided he needed to see me that day.  I was in his office by 2 and this is where the story really begins. 

Dr. Krishna did his normal assessment on my strength and was floored by outcome.  I was so significantly weaker and incredibly dizzy that it was unreal.  He walked out of the room to go get another doctor that works really closely with him and is the expert on these symptoms.  I knew at that point that I was going to be admitted to the hospital.  Dr. Lahda and Krishna walked back in the room and Ladha did his assessment.  He then broke the news to me that the only way to diagnose me and get to the bottom of this was to admit me to the hospital and keep an eye on my 24/7.  They called over to the hospital and sent me home until a room came available.  Before sending me home I asked what they were leaning towards.  The answers scared me...lymphoma (cancer of the lymphnodes), tumors, and some other auto immune diseases.  I cried the whole way home as I called family and told them what was going on.

I got a call a couple hours later saying a room was ready.  I got there and they put an IV in and began the process.  I woke up the next day weaker than the day before.  They did a CT Scan, another spinal tap, an MRI, and more tests than I could ever tell you.  There were a lot.  They decided that while they waited for the results to come back that they needed to start my treatments over again so I could start regaining some strength.  The treatments last 5 days and they watched me very closely because my blood pressure would always drop while I was on them.

Meanwhile, all my test results were coming back normal.  They were waiting for a very important one and that one didn't come back until today.  It came back normal as well, so they came to the conclusion that they had diagnosed me correctly, but I just didn't follow the normal pattern that people with this condition follow.  So they are sticking with the original diagnosis of CIDP (Chronic Inflammatory Demyelinating Polyneuropathy).  It is the chronic version of guillian berre.  

My sister, Annette, is here for a week to help me just in case Ryan is away and I need help.  They did want to send me to a rehab facility if Ryan couldn't be with me all the time.  I told them no and called my sister and she bought a ticket the next day.

I will tell you though...I could not have done this without the help of Ryan's family and LeeAnn watching Kayden while Ryan was at the hospital with me.  Also, Ryan amazes me.  He did everything I asked of him and he did it with a very loving heart.  He sees what I go through everyday and I am so grateful that he watches over me and loves me although I can't do everything I would like to do.  I love you babe!

Coming home at last...

Just so everyone knows...I have been in the hospital since last Tuesday and I get to go home in the morning.  I will let everyone know what was found when it is easier to type.

An update of sorts...

I just wanted to let everyone know what was going on.  I had my spinal tap yesterday and the dreaded thing passed with no complications.  The doctor did an amazing job and I only felt the needle of the numbing shot.  I didn't know the spinal needle when in until he said that he was pulling it out and had gotten more than enough fluid.  They also did an MS panel on me, which is just a fancy way of saying they drew blood.  Anyway, that is my update and I will hopefully have more answers by the end of next week.  

A misdiagnosis

Just thought that I had better update people on my past week of doctors appointments and such.  On Monday I started my treatments that I am supposed to have every other week.  That was an appointment that was just to make me feel better and it wasn't a switch from what I have been having done.  

On Wednesday, I had an appointment with Dr. Krishna and Dr. Lauda...they are the neuromuscular doctors.  I went to that with high expectations and left feeling frustrated and confused.  I was extremely emotional and I couldn't explain why.  The appoinment went fine.  They did some simple strength tests and also tested the feeling in my feet, legs, hands, and arms.  They used a safety pin and would poke my toes and up my legs until I could feel it.  I will just say that on my right side I couldn't feel it until it was half way up the shine.  On my left side I couldn't feel it until it was about and inch above my ankle.  On my arms and hands, again my right side was worse.  I couldn't feel it until it was half way up my fore arm on the right side and on my left I could feel it right above my wrist.  So, that wasn't a shock and neither was the fact that I only have one reflex left in my body.  My reflex in my foot is still there.  They ended up taking me off the medication to supress my immune system because I do want to have more children, even if it is just one more!  The medication hasn't had been studied enough to know if it could prevent me from having more children.  So that was that...nothing too exciting, but I wasn't comfortable with things.

On Thursday on my way home from work my phone rang and it was an unfamiliar number.  It was Dr. Krishna.  He was calling to tell me that they had been looking over all my stuff from the first time I had been seen in the ER and they weren't comfortable with my diagnosis.  They want to start from scratch again.  They want to redo my spinal tap because the first one is showing signs of inflammation and that isn't something that someone with my condition should have with what I had been diagnosed with.  They also said that both sides of my body should be equally effected and they aren't.  I am waiting for a call back from Dr. Krishna because I was so in shock about the call I didn't ask anymore questions.  I don't know if they have something in mind that I could have or if they are just as confused as I am.  Anyway, I will keep everyone updated.  I am scared to death and am putting my full faith in the Lord to help me through this.  I don't know what to expect and I don't know what I could have.  It is a scary thing for both Ryan and I.

On a lighter note...I can't do a post and not put a picture of my handsome little boy on it...so here he is in all his glory.  I love this picture.

An Update with some pictures...

So, I really haven't updated my blog since we got home from Canada.  It is probably because I got a stupid cold.  But it isn't good that I get a cold.  Nope, I started loosing my strength all over again.  I hate this stupid disease and wish that it would just go away.  So I called and scheduled a treatment and went in and had that done the next day.  It helped a little, but I was still loosing my strength.  I called my doctor and she was really concerned.  She scheduled me to have some blood work done, made an appointment for me to see a neuromuscular doctor that specializes in what I have, and put me on a medication that supresses my immune system.  Through out this whole thing I have never known that the reason I loose strength is because my immune system is way too good.  In fact, it is so good that when it has no more to attack it goes and attacks my nerves.  The only bad thing about this medication is that it takes six months for it to kick in and every month for who knows how long I am going to have blood work done.  So anyway, I am hoping that they can get a handle on this and keep in under control.  Meanwhile, I am having treatments twice a month instead of once and running up a nice little bill for my insurance to cover...I won't say how much one treatment costs, but let me just say...it is higher then you think...higher...higher...higher!

However, on the bright side of life we are doing well and Kayden is growing every day.  His favorite word is 'adios' and he even uses it correctly.  He loves to grab our hands and show us where he wants to go.  Most of the time he takes us to the front door and says, "Go, Papa's house!"  He sure is a papas boy.  Ryan and I think every day how boring life would be without the little rugrat!  He makes us laugh more and more every day.  If he knows you are laughing at him then it makes him laugh really hard.  

Last night, they were giving away bobbleheads at the Dbacks game and Ryan has been collecting these for Kayden since we found out we were having a boy.  So, I decided that I would go to the game with Ryan and take Kayden.  This was his 4th game and he loves them, although, he doesn't last the whole game.  Anyway, during the game on the Jumbotron (the big tv in the stadium) they ask for you to text pictures to this one email and they will put them on at the end of the 5th inning.  We have done this before and they have never put them on.  So last night we sent a picture of Ryan and Kayden and it was the third picture they showed.  Kayden thought it was pretty cool that he was on the big tv...We were glad they finally showed one...

Okay, so here are some pictures of the last couple of weeks...

Kayden was waving at the people on the Jumbotron.
Watching the ducks at the park.
Kayden always went down the slide backwards all the time.
Landon was awesome on the slide...
I just think how he goes down the slide is so funny.

My conversation with Kayden

We were on the way home tonight from Papa and Grandma Workmans and this was my conversation with Kayden.

K:  Momma, I want eat!

C:  You want to eat?

K:  No

C:  You don't?  What do you want?

K:  Night, Night!

C:  Oh, you want to go night, night?

K:  No

C:  Well what do you want then?

K:  I don't know!

C:  You don't know what you want?

K:  BIG CARS  (as he points out the window as we pass a car!)

This happened like 3 or 4 times.  It was pretty entertaining.

Random pictures of Canada, Canada Part 5

So this is the last of the Canada pictures. These are the ones that were just random shots or ones that I didn't put where they belong and then when I went back and looked at all the pictures I realized I had missed some good ones.
Restrooms are called Washrooms in Canada.
This is Kayden and Alexis being pushed around in the mall.
Ryan giving Kayden a ride on Orene's tractor.
Kayden always entertained us in the car.  He was so much fun.
Tyler and Jenny got there on Thursday and then left on Sunday with us.  Here is the cute little Brody that entered the family 8 weeks ago.  He is so sweet.  I got to babysit him yesterday and he is such an easy baby.
He was all smiles as we were getting ready to drive over the border back into the states.
Love this picture.  He is so cute.
Kayden loved this airplane.  This was in a little tiny town called Warner and we were waiting for Tyler and Jenny to meet up with us to drive over the border.
Does anyone know where we need to exit this place?  I think we need to go that way...Maybe that way.  I don't know...
Kayden loved wrestling with this stuffed horse at Orene's.  
Another carseat picture.  This was either on the way to Waterton or on the way home.
Kayden loves to try on everyone's shoes.  Here he has grandma's shoes on.
We were driving through Calgary and we saw this.  Very interesting, eh?
Ryan and I at the zoo.
Kayden was chasing Elyse through the zoo.  He loved it and we thought this was a pretty cool picture.

Mikes Wedding, Canada Part 4

The main reason for going to Canada was for Mike's Wedding. He is Ryan's cousin and he is such a great person. He came down for our wedding and there was no way in heck that we were going to miss his. We had never met his beautiful bride, but they are perfect for each other and we are so happy for them. Congrats Mike and Lindsey.
This is Mark with his mom at the reception.  Isn't she so cute?
This was the sweetest dance of the night.  Mike and grandma are so close and she was so happy to be able to dance with him.
You can see in his eyes that he adores her. 

*Note:  Notice the dress that she is wearing.  She picked out this dress and was so excited to get to wear it.  When Gayle was getting her dressed she told Grandma how pretty she was and Grandma said, "What is even more pretty is the person wearing it."  or something to that context.  She felt like a million bucks in this dress and she looked like a million bucks.*
This is Grandma and Rhonda.  Rhonda is Marks sister-in-law and we stayed at her house.  It was very nice.
This is Orene and Tyler playing with the fake candles.  It was pretty funny.
Here is Elyse and Alexis.  Isn't Alexis a little doll?  She loved Elyse.
The Workman clan with Mike at the wedding.  
I did Alexis' hair for the wedding.  She was the little flower girl.
The newly married couple.  Mike and Lindsey Workman
Here is the stake president giving them advice before he marries them.
The beautiful bride walking down the eisle with her brother and mother.
Mike trying to not tear up when he sees Lindsey.  We had a great time at the wedding and it made the trip worth it.  Congrats to the newly weds.

Waterton National Park, Canada Part 3

So Waterton was great because it was beautiful. It wasn't really anything I had seen before so that was nice. The deers were not friendly, but they didn't run if you wanted to get a little close to take a picture. They were sitting in the yards and it was really cool.
On the way home from Waterton we were able to stop by the temple to get a couple of snap shots.  It was nice to have a family picture in from of the Cardston Temple.  
I guess this is a tradition for Elyse to stand in the water like this, but they usually go to Canada later in the summer so it was pretty cold this time.  When she got back in the car she found out that it was 50 degrees outside.  BURRRR....
This is Mark and Gayle with Grandma Marie, Mark's mother, at the falls.  
Our little family with Grandma Marie at the falls.
Tyler, Jenny, Brooke, and Brody with Grandma Marie at the falls.
Mark and Gayle with the children and grandma Marie.
Ryan hiked to the top of the falls and took this picture.
Our cute little family in the freezing cold.  Kayden was just happy to be out of the car.
Brooke and Kayden randomly hug all the time.
Brooke and Kayden watching the water where Sassy fell in to.  (If any of you have seen Homeward Bound, Sassy is the cat and that movie is Brooke's favorite and she said that this was the water Sassy had fallen in.)
Ryan walking with Kayden
Cute little baby fawn with its mother.
Brooke at the Prince of Wales Hotel.  This was a cool little place.
This is higher than it looks.  I guess it is tradition in the Workman family to climb to the top so Ryan did it with me.  It was really scary because it is really old and the wind is blowing.  I was freaked out.
The wind was blowing so hard and I was freezing cold. 
Kayden taking a nap.  Gayle watched his head very closely because if it fell forward she would hold it up like this.
This is Mark and Gayle getting Grandma Marie out to the car to head to Waterton.  She had a good time and it was so fun to have her with us.  She is a very dear, sweet lady.  I feel so lucky to have gotten to spend some time with her.  

More pictures to come...