The diagnosis update

Two weeks ago Ben went back to the his neurologist for a follow up appointment.

To make a very long story short ............

Ben was diagnosed with CIS. http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/diagnosing-ms/cis/index.aspx

He is in the category of High Risk due to the fact that there are multiple lesions on his brain.

We are currently researching two medications he needs to choose between to start as soon as possible. Both are shots that he will need to give himself. Expensive.

Knowing that Ben will develop MS in the future as turned our worlds upside down. We are completely re-evaluating everything that we had planned out. This changes everything.

We decided to rent a place as oppose to buying. Having our future be so unknown makes it very difficult to lock into a 30 year mortgage.

We found a beautiful place in Wauwatosa. We start moving in a few weeks. We are very excited to have a three bedroom place with a natural fireplace. The little things make us very happy. :)

This weekend starts the season of what we affectionately refer to as "500 Christmas's".  Saturday is our first of 5 Christmas parties.

Tis the Season.

Sick Sick Sick

The day after Carter had his reconciliation he came home from school with a 101.1 fever. His stayed sick for three days. He even spike a 103.5 fever on Wednesday night. He never threw up though. Crazy sickness. He went to school yesterday because he asked his dad if he could, although I thought he should have had another day home. He seemed to have done ok. No more fever but he was super tired and went to bed early. Hate this time of year. Oliver was throwing up last Monday but had no fever.


This morning in the car Oliver asked me ...
"Mommy, when I am 31 and a mom can I come to your work and share your chair?"

My response (to myself) was "Oh honey I hope you have your own job and chair to go to!"

My response to him.."Of course honey."

Reconciliation

Monday November 3, 2013

Carter and 32 of his 2nd grade friends participated their reconciliation. They were all adorable all dressed up and anxious to say they were sorry for their "sins".

It was very nice and Carter really was excited about it.

Happy Thanksgiving!

In honor of Turkey Day tomorrow, I thought it would be appropriate to write a post on what I am thankful for. God knows I don't give thanks enough. And what better way to let someone know you are thankful for them, than in a public blog post. :)

2012....What I am thankful for..........

7 year old Carter......(his sense of humor, the way he still wants to cuddle me (as long as we are at home and no one can see, and his love for math.)

3 year old Oliver.......(his silly disposition, facial expressions, and his love and knowledge of cars.)

Benjamin......this man loves me more than I deserve. He thinks I am beautiful with no makeup, sweatpants and tshirts. He has done things for our family that I can never repay him for.

Sammy......It took a long time for us to get to the place we are now but my little sister is my biggest support system. She is the person I call first above everyone else when I need a shoulder to lean on. This girl is an amazing and I am so thankful to have her in my life.

My parents......My mom and step dad are amazing and have always had my back.

Jack and Jill......Jill's words of wisdom are simply priceless.

Katie and Joe......My "little" sister and "little" bro make me melt when I see them love my kids so much. I am so thankful that they are such an amazing aunt and uncle to Oliver and Carter.

Fat cat Bugs.........I am so thankful for this fat and loving cat. Having this cat sleep on my feet every night makes everything right in the world in a odd way. He needs us as much as we need him.

Mary.......I am thankful that she has endured us taking over her house for the last year. Nuff said.

Tri City Hyundai.....I never thought that a job could be a place I wanted to go. This company has been a blessing this year. I looked for work for a long time. Not only have I found a job that doesn't suck but I found a group of people that genuinely care about each other.

Jessica......This woman has been a huge part of my life this past year. Countless phone calls, papers corrected, and late night glasses of wine and girl talk. I can not imagine my life without you as my dear friend. Surprised after all the time that pasted after high school how in no time we reconnected like no time had passed at all.

Mike, Julie, Nick and Steph......This family is an amazing light in our life. They are always so welcoming and loving to our family. As Ben's aunt and uncle they never once make Carter or I feel like we are not a true part of the Grassel family. And Julie taught me to knit! :)

Health....Last year on Thanksgiving I was in the hospital having emergency surgery to have my gall bladder removed. Today I feel great. My kids are healthy. Oliver has had no histiocytosis events. Ben tested negative for MS(right now). So right now in this moment I am thankful for our health.

Grandma's House daycare.....I can not say enough how amazing Oliver's daycare is. Ms. Lynn, Ms. Darcel, Ms. Laurie, Ms. Katie.......These are fantastic educators. My 3 year old has learned more from these ladies than I would have ever imagine from a daycare. What preschool child knows dinosaurs with correct pronunciation as well as characteristics, habitats, and what they eat? These teachers are genuinely concerned for my child. They are priceless.

Golden Gyro's.......I am thankful for their strawberry sundaes.

I am so thankful for many other things too. I could really go on for days. Bottom line is even if it sounds minuscule to you......these things are huge to me.

I am truly blessed.

Whoa!

Haven't posted in a month. Oops. You will learn about me (like my friends and family already know) that I am not the greatest at follow through. Seriously. I suck at it. I am the master of start someone thing and not finish it. Not daily tasks as much as huge projects. Like this blog. Or going to the gym at 5am. Or putting away all the laundry after I wash and fold it all(that's a huge project...3 boys...you do the math).
Short recap of the past month.....

My favorite coworker left the dealership.

Oliver and I voted. For Obama.

Carter and I attended his reconciliation retreat. He has his first reconciliation on December 3rd. When I asked his dad if he was planning to come he said ,"What's that?"   True story.

Oliver said this......
"Mommy, why do I have to go to daycare everyday?"
"So I can pay the bills, buy groceries, buy clothes, buy toys........."
"Oh stop.....Toys?"
"Yes Oliver. So I can buy toys."
"Ok....take me to daycare." 

I dropped the ball somewhere along the line as a parent when Oliver grabbed his big toe and called it a big thumb.

DIAPER FRRRREEEEEE!!!!!

Saturday night I walked up to Oliver's room to grab his night time pull up to put on him. They were all gone. Oops. Poor planning on my part.

Instead of rush to the store to grab some more..........we decided(with Oliver) to try all night with just underwear. He already naps in just underwear.

I slept like crap Saturday because every time I heard him I thought he had to go to the bathroom or was about to in his bed.

NO ACCIDENTS! So proud of little man!

So we are now officially a diaper free household!

Time to have another. ;) Jk.

10/12/12.......10/14/12

This weekend Carter played in the Kohl's Fall Rec Soccer Tournament. Although they lost all 3 games, they had fun. The weather was terrible and the kids played in soaking wet soggy grass and rain.

 

It's been a while......

Catch up.....

Carter is a soccer maniac. Doing super good and scoring at least one goal a game. SO proud.

Oliver continues to impress people with his extensive knowledge of makes and models of cars.

Carter is on his way to celebrating his first reconciliation. December 3rd is the big day. In April he will receive his first  communion. Very exciting for him and us. He really is loving learning all about his faith.

Oliver is becoming more and more independent and I wish it would stop. He barely lets me take care of him anymore. Ben even less. He is even flossing his teeth alone!

After being diagnosed with gum disease I am going in to have scaling and root planing on October 17. Who would have thought that in 2 years not going to the dentist that I would get a diagnosis like this.

Oliver and Bugs....lazy boys.

 

 

Carter never lets me take pictures of him. :(

 

Update

Ben received his MRI results. As of right now they are not diagnosing with MS. Happy news. He has optical neuritis. But at this point he thinks that maybe that has to do with a bump to the left side of his head.

At this point we are happy that MS is not the case.

1ST GGGGOOOOAAAAALLLLLL!!!!

This weekend Carter had soccer. He was kinda bummed when he woke up to a rainy freezing cold day thinking maybe his game would be cancelled.  We were assured by an email shortly after that he would be playing. The only way they cancel a game is in a downpour or tons of lightning. So we bundled up and headed to the game.

It was a good game! The teams were really evenly matched which kept the game exciting.

The best part about this game is that Carter was in it. Like really into what he was doing. He took everything the practice and it just clicked this week.

A goal was scored and they set up in the middle to play again. He looked at me and I said to him, "Today is the day you get a goal."  He smiled and gave me a thumbs up. Less than five minutes later he got his very first goal ever! He was so proud. I jumped out of my chair and had instant tears in my eyes! I am so proud of this child.

Ricky Lee Bell

Yep, that's my "dad". I use that term loosely. He gave me life. There is a song that says " my daddy gave me a name and then he went away....". That's pretty much my life. Ricky Lee is an alcoholic. He has never done anything for myself or my sisters. My parents were divorced when I was about 4. I have vivid memories of my dad beating up my mom and being arrested in our home. I was my dad's pride and joy. His first born(my older sister was adopted by Ricky.). He was so proud. When I was in a pageant when I was 4 and took a runner up position he yelled from the crowd how upset he was and preceded to pull me from pageants all together.

My dad is dying of prostrate cancer. Stage 4. He started chemo in November when he was diagnosed. Soon after he stopped treatment. It was not going to save his life. Last week Wednesday he was given 6 weeks to live. I have not seen my dad in 6 years. I decided seeing him one last time might be a good idea.

Yesterday I took the trip to Green Bay to see him. He is living in a shitty hotel. He has refused to take a bed at a beautiful hospice facility because they will not let him drink. He is living (dying) off of disability money that just allows him to buy booze and cigarettes. And refill his Oxycontin prescriptions. He has nothing. He has a girlfriend that he has been with for 14 years. I have never known this women even existed until recently. She is 46 and disabled as well. Living off of disability checks as well. They have nothing. No food. No clothes besides what they were wearing. No car. No jobs. No nothing. Nothing. But they do have booze and cigarettes.
Anyway, after the two hour drive I drove past the hotel and parked in a business next door. I almost didn't knock on the door. I am so angry with him. Angry for all he put my mom through. Angry for what he put my grandma and his mom through.  Angry that he chose alcohol over his kids. Angry that he has always chose alcohol over everything. I sat in my car and convinced myself that I need to say goodbye. I needed to have some compassion for this person and let him see his daughter one last time.

When I finally knocked on the door he was so happy to see me. He cried instantly. He must have told me 100 times yesterday how beautiful I was and how proud he was of the person I had become...thanks to my mother. He never said one bad thing about my mom. I was in awe. He was drinking when I got there. I didn't expect much else. His girlfriend was drinking as well. It was all awkward conversation about the past and the future. He doesn't want to die. And he never thought this would be the way he would "go out".  I tried to comfort him the best I could. I reminded him that he will get to see Grandma June, his brother and his grandma again.  He just doesn't want to die.

I met Erica, his social worker from the hospice facility, and she explained to us the course of actions that she is working on. She has been trying to find them an apartment. But they have multiple evictions. My dad keep saying that he just wanted to make sure that Cari was taken care of when he was gone. Hearing how concerned he was for her and how adamant he was that she be taken care of was like pouring salt in my wounds. How can he care so much for this women and her well being when he never gave a shit about us? Never paid child support? Never made sure we had what we needed? I decided at that point my visit was over. I left at 2.

When Sam showed up a few hours later, he wanted to take a ride in her mustang. To where? The liquor store. Of course. When they got back and we were finished talking with Erica, I left.

He called me later to make sure I got home alright. It blew my mind. But he also told me Sam had taken him to the bar after I left and that is where they spent the rest of the day. He assured me Sam drank ice water. I wasn't worried. I know Sam is responsible that way. And a people pleaser.

I'm not quite sure how I feel about the day. I feel good for going. I feel like I accomplished something in going to see him. Seeing him happy made me feel good. Seeing him proud made me feel good. I'm still so angry with him though and I am not sure that will go away anytime soon. Seeing him brought back all these feelings and anger that I had buried so deep.

One thing that I did learn yesterday is how lucky I am to have had such an amazing mother. This women was terrorized by this man, beaten by this man, stolen from by this man and then left with 3 kids to raise on her own. She worked multiple jobs and went to school and became a nurse as a single mom. My mom drove me crazy growing up but I will be the first to say that if it wasn't for this women......I have no idea were I'd be.

On a brighter note.

Today Oli went to the dentist for his second time. The first time was a disaster. Today he was great! He hopped right up in that chair and talked about all the cars he knew, showed off his "Snot Rod" Crocs, and announced that he gets candy if he's brave. I was quite embarrassed by the last thing but hey, he's 3. I did anything I could to try and make this experience painless.

Results?

Well, today Ben saw the neurologist and based on what he told me, he got good and bad news. He recorded the conversation with the doctor so that I can hear word for word what it says. He has optical neuritis (http://www.mayoclinic.com/health/optic-neuritis/DS00882)  and sporadic tingling in his hands. He has lesions in his brain that are "not active". The doctor told him he could have something called CSI?. A CSI diagnosis would mean that he will develop full blown MS in ten years or so. That is the bad news. He will not have another MRI on his neck (Friday the 21st) and had more blood work today. If those tests come back normal he will then have a spinal tap.
http://www.nationalmssociety.org/index.aspx ( A really good resource.)

Tests tests tests. Someday and someway....we will get to the bottom of this. Keep praying.

On a side note....I looked at Ben taking care of his health issues so I decided to do the same and go for my follow up colposcopy for my cervical cell changes(September 27th). Here's to hoping it has not developed into cervical cancer. And if it has .........well.......I have Ben by my side to help me deal with it.

The past week.

I just felt like I needed to write about what we are currently going through as a family. A week ago Ben went to the eyes doctor because he was having some vision issues in his right eye. He was sent to a specialist. Pictures of his eye showed some nerve issues. Yesterday he had an MRI on his eye and brain. That brain MRI came back with preliminary results pointing towards Multiple Sclerosis. This news has us frozen. We know its not a death sentnece. But at 29 years old, Ben is scared for his future. Especially his future as a father. A father that loves to get down on the floor and plays cars with his son. A father that loves to play baseball and ride bikes with his the boys. What would this diagnosis do to his quality of life? What would the effect be on him mentally? Us mentally? Needless to say we are scared of the unknown. The next step is for him to see a neurologist. Hopefully that will happen this week.
Until then.....we just wait and wonder.

2nd grader! (Really???)

This week Carter started 2nd grade.

In front of school

He was way too cool to stand for a nice picture. And REALLY embarrassed when I told him I loved him and wanted a hug and kiss. In response I always tell him that I carried him around for 9 months and then had him surgically removed from my stomach, so he will kiss me and hug me when I want. Okay I leave out the surgical part. I told him that he had to give me the joy as his mom to take one picture of him on his first day of 2nd grade. He told me I already got my one picture because of picture day the week before. Smart ass!

In line

"Enough mom!"

Anyway, his teacher his Mrs. Camilli. A long turn sub for Mrs. Wessing who just had a baby. Carter likes her a lot.
He had a really good day and really was happy when he came home.
Here's to hoping he has a smooth year!

Beautiful things

A few cute things from the last week or so....

I wash brushing my teeth one morning before work and Oliver randomly came up to me and said ,
"Mommy, you're beautiful."

When Ben picked Oliver up from daycare yesterday he ran to the car and looked for Carter. He was really sad when he didn't see him in the car. Ben explained to Oli that Wednesday is "daddy day" for Carter. Oliver's reply was, " But how am I supposed to play with him if he's not here?"


Ben and Oliver were playing cars on the living room floor one day. When Ben got up he paid a groan because his knees hurt when he tried to stand up.
"Whats wrong daddy?"
"My knees hurt Oliver. Daddy is getting old"
After kinda mocking Ben and pretending that his knees hurt, Oli replied with,
" Yeah, well.....that happens when you turn 16."

This little piggy....

Oliver is really into having his toenails painted like mommy. He is also very particular. Yesterday he asked for "blue nails with red coka dots". He had to settle for pink on pink.

A new adventure

Okay, so I seem to post our entire lives on Facebook. I figured that a blog would be so much better. Then I don't need to listen to people who are bitter on Facebook and make comments about "too much information" and that "people could care less about people's kids". Now if you care to see our life , subscribe to our blog. :) I hope that I am able to put a smile on your face when you read this.......because my kids make me laugh daily.

This is a family picture from 2010 but it's one of my favs.