Where has the time gone?

Whew!  Another long, long break!  Between the holidays, another meningitis hospitalization in early December for me, two polar vortex storms of enormous proportions and my husband having a week long stint in the hospital himself, I haven't even thought about this poor, neglected blog.  How many times have I done an update in photos and then promised to come back?  Well I am really working on my organization and prioritizing so I hope I can keep to it this time.  In the meantime....here are the last few months in pictures...

Mama/Daughter Day at the Ballet

Ani & I went to see The Nutcracker and we were able to go backstage and meet the dancers.  Annika was on cloud nine because the girl who danced Clara was named Annika as well (though spelled Anneke).

Christmas Crafting with my bestie & kids

  

The kids painted snowman votive holders and Lea & I painted several winter/Christmas themed wine glasses like the snowmen above.

Christmas Eve

My hubby and I did some very early morning Christmas Eve shopping.  The weather was beautiful!  And then the candlelight service at our church and the tree after the kids went to bed.

Cotton Candy!

The kids gave me a cotton candy maker for Christmas.  Dangerous!

 Sewing!

 Jimmy gave me a sewing machine for Christmas and this pot holder was my very first attempt at sewing.

The Best Birthday Ever!

 In addition to adding to my new Pandora bracelet, Jimmy spoiled me this year on my birthday by getting me the Naked 2 eyeshadow palette by Urban Decay!  And then, my lovely friends surprised me with a small birthday party and cake pops.  I am so blessed!

  

Has it really been a year?

A year ago yesterday was the anniversary of my first hospitalization for meningitis.  What at first seemed like an out of the blue case of bacterial meningitis soon turned into a medical odyssey.  As stressful, scary, frustrating and tiring as the journey has been I can't bring myself to regret it at all.  Without this medical drama, I may never have realized how truly blessed I am.  God has continually shown me how He provides.  He is indeed great!  

Last week my best friend & I took a little road trip to Ann Arbor to meet a new Rheumatologist for a second opinion.  It was comforting to meet a doctor who showed some urgency about the situation and seemed to grasp that a laid back approach just wasn't going to work.  She doesn't seem to think that the Sjogren's Syndrome is the cause of this and she ordered lots of testing to look for a possible Lupus diagnosis.  She also didn't think that the Methotrexate chemo treatment was going to make a difference.  She is leaning towards Cytoxan possibly in addition to Rituxan.  She wants to find a way to get me off of the steroids as it is obviously not ideal to spend this much time on them, especially at these high doses.  In the meantime, she placed me on Fosamax to assist in any possible steroid induced osteoporosis.  She has referred me on to a neurologist in Ann Arbor and also requested a new MRI/MRA.  

I am no longer content to wait patiently for another opinion though, and have a few other options brewing.  My neurologist in town here has ordered a special blood panel that tests for encephalitis.  The lab is scheduled to come to my house in early January to test me for Anti-NMDA Receptor Autoimmune Encephalitis.  I also have an appointment with my GP to get a referral to an Immunologist.  I have a fourth cousin who also happens to have SJS.  She recently saw both her Rheumatologist & Immunologist and brought my bizarre case up.  They were both stumped by the meningitis and highly recommended that I get a full immunologic work up to see if I have any issues on that front.  I'm also on the hunt for a new ophthalmologist....someone who will agree to permanently close up my tear ducts instead of placing punctal plugs.  My eyes are more dry than ever and the plugs are just a stop-gap measure in my opinion.  

Meanwhile....Christmas preparations proceed in the Chase house.  

  A picture of my food prep/baking list that needs to be completed before Christmas.  I suppose it's a good thing that the steroids are seriously cutting into my sleep time.  It gives me the time to bake.  My kitchen looks like a war zone....all the baking supplies and goodie bags stockpiled on every available counter space.

In addition to food prep and baking, it's been a week of volunteering, holiday concerts and doctor appointments.  On Tuesday I volunteered at the Angel Tree gift distribution at the Salvation Army.  Last year was the first time I had done it and I love it.  I hope that I am always able to serve in the capacity.  From there, I went to my baby girl's last holiday concert in her elementary school career which was pretty bittersweet.

 I may be biased, but isn't she adorable??

Yesterday was a doctor appointment for my little man and today is one for me.  Tomorrow is Aidan's holiday concert at school and I may have heard a rumor that he's appearing as Santa Claus.  I don't mind all the busyness....I'm hoping it brings Saturday here sooner.  We get our daughters on Saturday and then our family will be complete once more.  Saturday we'll be spending the evening with our chosen family and Sunday we will celebrate a Christmas Eve candlelight service at church.  I am so blessed to be alive and healthy enough to enjoy all of the bounty God has provided!
  

Catching up

As usual, time can get away with you when you've been spending too much of it in the hospital.  Last Monday was a very normal day for me....running errands and finishing up (thankfully!) our Christmas shopping.  We had our typical evening of dinner and cheer practice and my last memory is of cuddling in bed with the hubs, both of us reading and then me deciding I was sleepy so closing my Nook and heading off to the Land of Nod.  The next thing I know, I wake up in an ambulance.  The nice EMT was trying to get me to speak to him and tell him what my symptoms were...poor guy, I was of no help.  He tried tapping a vein because he could tell I was in desperate need of fluids but I was so dehydrated there were no veins to be had.  Talk about a twilight zone experience...to go from sleeping to an ambulance with zero recollection as to how or why you were there.  Once we arrived at the ER, I was put in a room right away and actually got a new nurse and doctor for once who weren't in on my bizarre medical history.  The poor nurse was trying her best to get a vein....but even the phlebotomist couldn't get one.  They happened to tap one but thought it was bunk because it didn't draw blood.  Thankfully I convinced them to flush it and try to use it for fluids because their next step was some sort of femoral shunt.  Needles?  In new places?  Without putting me to sleep?  No thanks!  Finally my husband arrived to clear things up for me.  Apparently, after falling asleep I woke up, told him to get me a bucket because I was going to be ill and then immediately slid down into the ugly abyss that is meningitis.  I was unable to speak almost right away, only being able to grunt and my arms curled in towards my body uselessly.  Jimmy put socks and shoes on me but once he stood me up, my knees buckled, I collapsed and he couldn't get me back up so he had to call the ambulance.  This was the most ill I had been in quite awhile and that is saying something!  I spiked a temp so they put me in a lovely torture device that was a mattress pad connected to a machine that made it ice cold.  And then they put me in IMC, where they usually stick me if I am conscious.  I was hospitalized until Thursday.  They treated me with the normal rounds of anti-nausea meds, Solumedrol (IV steroids), Tylenol for the fever and Dilauded for the pain.  I was happy to see that I had one of my favorite doctors on rotation....she is actually studying to be a rheumatologist and she's fantastic.  I also had a few visits from my neurologist and was able to talk him into getting me tested for Anti-NMDA-Receptor Autoimmune Encephalitis, a rare disease I recently read about that fits a lot of my symptoms to a T.  While I'm waiting for that lab to contact me (of course it can't be simple...it has to be a special lab that takes a special encephalitis panel that costs gobs of money), he also put me back on Lyrica and MY rheumatologist doubled my chemo dosage.  He is also in the process of trying to get me approved for IV chemo through my insurance company.  

After all the medical drama, we still had cheer Regionals this past weekend.  Yet again, I am reminded of how blessed we are in our friends and family.  Some of our friends brought dinner to Jimmy & the kids while I was in the hospital and prayed with them.  Another friend came over on Saturday to do Ani's hair and make up for the competition because I was in no way up for it.  And finally, a wonderful mom from our cheer team picked Ani up, took her to the competition and made sure to send me lots of pictures and updates!  

My husband has been amazing through all of this as usual.  He won't let me lift a finger.  He has been cleaning, cooking, doing laundry and running the kids around.  He soldiers through it all...even when I say "Aren't you going to put fabric softener in the wash?" or when he adds two cups TOO many flakes to the instant mashed potatoes.  He has this diabolical plan to keep me on the couch and in this house completely for the next month.  I tried explaining that I will need to get out just for mental health purposes....not to mention I have things I have to do!  

Cheer tonight, Christmas baking to be done, knitting and gift making, prepping food like frozen dinner rolls, breakfast burritos & meatballs, a second opinion appointment on Wednesday in Ann Arbor that my bestie is so kindly taking me to, volunteering for the Jaycees on Saturday morning and of course, no one and NOTHING is keeping me from seeing The Hobbit this weekend!  Truthfully....I can do about two of these things a day and still be a slug on the couch..he is going to have to get used to it! 

Family Traditions

One of the things that is important to hubby & I is that we build fun family traditions to share with our kids.  Some traditions are small and simple, like going to church every weekend or having pizza every Friday night.  Others are typical like having a family game night.  What are some of the traditions your family has?

Thanksgiving is HUGE in our family.  We start the morning out with the Macy's Thanksgiving Day parade.  Then while I start the meal, hubs gets the Christmas tree out and starts to put it together. 

When we have Jimmy's girls for Thanksgiving, it's Rain's job to stuff the turkey. 

Yeah, her dad thought it was pretty darn funny...mainly because he won't touch raw meat. 

Ani bastes the turkey

Anii & Dez help Daddy put the tree together

Another tradition is that we have a football/pumpkin party every year with some of our closest friends.

 

She swears it tastes just like chicken!  Ewwwww

Then there is the same crew for a Christmas party that may or may not involve messy cookie decorating and ornament making....depends on the host!

While I'm on the topic of Christmas, we have the Christmas tree cinnamon rolls.  This was a tradition I grew up with and I love carrying it on for our kids.

And a tradition that Jimmy & I started with the kids...Jesus' birthday cake!

The reason traditions came to mind is that I'm going to start a new one with my baby girl tonight.  A brilliant (I think!) idea that I, of course, got from Pinterest.

I picked up this adorable notebook at my favorite store today and wrote a short letter to Ani in here.  I've slid it under her pillow & when she gets home from Youth Group tonight, I'll let her in on the secret.  We can take turns writing to one another and hiding it under our pillows.  I think it will be a great way to keep our relationship as close as it is now and it will be a great memory for her to have when my time comes.  She can share the idea with her daughters if she is so blessed to have them.