Friday, January 28, 2011


Still no news on spinal tap results.  As for Jonah, he is gaining, gaining, gaining.  Part of that though is that he wakes up every 2 hours it seems at night to eat.  He still has no self soothing skills being he refuses to suck his thumb anymore which I think is really too bad but what do ya do? 


I used to hate winter. 
Everything about it.  
The snow. 
The temperature. 
The cloudy days.
The short days. 
The long nights.
The coats, mittens, hats, scarves, snow pants and boots.
Now...I like winter.
I look at winter as a time for rest.
I think one reason that God gave us winter was to rest.
Just like all of the animals that hibernate or all of the trees that rest in the winter.
  The days are short and cold and the nights come all to quick.  We have had a lot of "resting" or down time lately that I have been enjoying.  Time to just hang out together, go to bed early, wake up late, or not worry about how much we can fit into the day.  When I think ahead to spring and summer I get stressed out because they are so short here in Minnesota that I try to pack so much into each day.  Waking up early, getting the kids outside, taking them on a walk to the park, making sure the dog gets walked,  going to the beach, then a game of kickball, then off to baseball, next a bike ride around the neighborhood, a bonfire, night games, finally baths and a late bedtime of course not at least until it gets dark which is around 10pm.
Don't get me wrong I do love summer and I love all of those fun summer things it's just that now I am starting to also enjoy winter.  Yes, the snow and everything but especially the time that I get to hang out and "rest" with my family, not always on the go, go , go like in the summer months. 
Check out some of our winter pictures:

Wednesday, January 19, 2011

Jonah had his weight check appointment today.  He is 14lbs. 8oz. which means he has gained over a pound in three weeks.  Jonah's Dr. still would like to see him gain more, but I think she's happy that he's back on the charts. 

A quick note about me.....
I heard from my nurse today that the test results that I'm waiting on are suppose to be back Thursday or Friday.  I'll post when I find out.


Friday, January 14, 2011

Thursday, January 13, 2011

Today I had an appointment with my neurologist.  Basically, she went over all of the test results and plan of action for my diagnosis and treatment. 

MS is still being ruled out.  There is really nothing that jumps out as far as any of the tests pointing to anything.  We are still waiting for the results of the spinal tap to give us a yes or a no to NMO even though the blood test is negative.  She has me continuing to take 20mg of Prenisone every day instead of weaning me off of it.  The reason for that is until we know for sure whether or not I have NMO, it's best to keep my inflammation areas hopefully controlled with the Preinisonze.

My Dr. wants me to go and see a NMO specialist/expert down at the Mayo Clinic.  I probably won't be able to get in appointment there for a month or more.

All in all I feel pretty good about my appointment today.  Although, still a little nervous that I have NMO but continuing to put it in God's hands.

I am still having the light flashes at night.  I forgot to mention that to my Dr. today.  I hope that they don't get worse and that it's just part of the healing process.

Tuesday, January 11, 2011

Jonah update

Guess what this is?

Avocado! Pureed Avocado that I made for the first time.  Baby Jonah loves it!  So, thank you to all those who suggested it.   I do believe that Jonah is gaining weight. I think he's up at least a pound if not more. 

As far as me...

I'm feeling pretty good.  My eyes are still seeing light in different ways than before this whole thing started.  Also, I'm still having light flashes at night now my left eye as well as the right.  Although, it's not as bad in the right eye anymore.

I haven't driven yet even though my eye Dr. gave me the okay. I'm just a little nervous that I will miss something and get into a crash or something. 

Thursday is my next Dr. appointment to go over the test results that are back.  

So, continued prayer would be for healing and peace with whatever God has in store for us.

Monday, January 10, 2011

Pokemon Champ X2

Our Shane is now a city champ in Burnsville and Coon Rapids.

Hmmm you may be asking yourself what does that mean?  Well that means that he took home 18 Booster Packs, a 1st Place Medal, and bragging rights two days in a row.  He first won a city championship back this time last year in St. Paul.  He was so pumped and happy to win he could barely contain himself.  Here is a picture of him with his loot.

What I would say is that Pokemon is a really fun, clean, safe game to play with the kids and super technical in nature requiring the players to know tons about many cards.  All in all, its a good game for kids and adults to play to have fun with make believe creatures that when defeated are knocked out, not killed.

So that leads me to share a story with you about a battle that I had about a year ago in SLP, Dreamers to be exact.  I sat down at my table number and then my opponent sat down, he said hello told me his name and shook my hand and then the battle commenced.  Long story short, he defeated me and my Pokemon in about 3 turns.  I was really down about it until I heard I was just in the presence of greatness as he was coming off of a World Championship Tour taking 3rd place.  Yes 3rd place in the world and I thought I could do something.  It was fun, it was a pleasant experience even being crushed.

Thursday, January 6, 2011

Update for now...

Okay so the last we heard from the Neurologist Nurse was that the Blood work came back for the NMO results and that was NEGATIVE. Also Kristi went to an Ophthalmologist for a follow-up meeting and that went rather well as he was pretty sure that the Blood work alone should be all that is needed to rule NMO out completely, we on the other hand have been told from the Neurologist that they still would like to see a negative back from the Spinal Tap that was done before Christmas. So all in all, we are still waiting. We continue to lean heavily on God as he is for us, so really who can be against us?

Again I hate to sound like a broken record but we want to thank everyone that is praying for us, and everyone that has helped out in anyway.

On another note, Kristi’s grandpa, Art (Papa) Charlebois is in heaven now. He died early Tuesday afternoon and his service is tomorrow morning. He was a great man. Through his entire life he would always remind us at gatherings that he believed he had the best family one could ask for, and now I think I know what he meant. So to the Charlebois family and it’s now ever growing additions, we too think that it is the best family that we could ever ask for as everyone is genuinely concerned and eager to help out whenever/where ever possible.