Random thoughts

Well it has been a busy, bittersweet week for us.

On Sunday afternoon my mother-in-law called and said that our aunt was taken to the hospital and was unresponsive and not expected to make it. She woke me up from a nap and still half groggy I remember saying, "oh my gosh, okay, well please keep us posted and let me know if we can do anything." When I fully awoke from my slumber I told Kris and I thought we should head to the hospital....knowing there was not much we could do, but at least be there for emotional support was better than living our "normal" life at home. Kris' aunt passed away the next morning.

It's heart wrenching to know that there was nothing that could be done for her. And I'm so saddened for her family. She was a bubbly person and had a great smile! I didn't know her very well, and I regret that.....but it taught me a lesson.....a lesson that I should have already learned but haven't....life is short, a blink of an eye, really, and something that I shouldn't take for granted so much.

It's events like these that make you think, and I mean REALLY think about how you treat people, how you want people to remember you and how you want to life your life. It's events like these that start up conversations that you NEVER want to talk about, like would you rather be buried or cremated? And who would raise the kids, and how many people would attend your funeral, and is signing up for life insurance a good idea?. Kris and I seldom talk about anything bad....let's face it, it isn't easy to want to think about the worst case scenarios, but it's so important to be prepared.

So hug your loved ones today, tell them you love them.... don't take life for granted. God is the only one who knows what our future holds and we have to be ready, at any time for anything.

In lighter news I knew that the boys would be away from us for a few days while we attended the viewing and funeral, etc. So I decided to take them to the doctor last night. Owen has a swollen eye lid and I wanted to make sure it wasn't pink eye, and Wyatt has had a bad cold for a few weeks and has been beyond fussy.

The doc said that Owen has a sty, which we are treating with some antibiotic ointment and he has allergies so we needed to start him on some meds for those. She checked Wyatt out next and said that he had a nasty sinus infection....WORST mom of the year award goes to ME!! So he needed to start on antibiotics too. All in all I'm so glad I got them in when I did.

While at the doctors, I was asked if either of the boys had any allergies to medications. I responded as I usually do "not that we know of" when Owen lifted his finger to the doctor and said "well actually I'm allergic to the sun." Whaaaatt??? This kid is seriously a goof.

Then after we went to the store to get their scripts filled,  Owen proceeded to tell whoever would listen to him that "he was going to Aunt Julie's for a spend the night and that they were going to have some private time." Ummmm really Owen? That doesn't sound all that appropriate!

And Wy man continues to be an exhaustive handful for me. He now yells "hey" as loud as he can over and over again when he wakes up in the morning until I go get him out of his crib. Super goofy! And going on about a week now he takes his shirt off at bedtime so when I check on him he is always shirtless....adorable.

Lastly my CT results came back and I have a kidney stone which may explain some of the pain I have been having. I have to follow up with urology and when I have time I'm going to research some new medications that my rheumatologist mentioned to me for pain.

SO that's my update on everything that's going on. If you pray please pray for peace and comfort for Kris' uncle and two daughters and soon to be son-in-law. They could sure use some prayers right now.

Wyatt

Today at lunch I gave Wyatt some orange juice mixed with water. I gave Owen regular orange juice too but he asked if he could have a lemonade out of the garage. He had seen the lemonade when he was helping Kris clean out the garage this weekend so he knew it was out there. So I thought okay, no harm in giving the kid lemonade with his lunch. I went to the garage and got him a can of lemonade and came back in and gave it to him. Wyatt immediately grabbed his sippy cup and held it high up in the air for me to see and yelled, "POP" as loud as could be!!! Yes he got pop too.....what a stinker he is! He can talk when he wants to, that's for sure!

It's Thursday........

And by the pictures I got it looks like my boys are having a GREAT time with grammy and grampy!

They went to the village and museum today and had lots of fun! It's weird to think how small Wyatt looks in this picture. I promise in person this kid is HUGE!

What a beautiful day for a vintage car ride!

Owen showing off his mad mechanic skills.

Kris will be SO proud!

Thanks to grammy and grampy for taking the boys today. I'm working a 24 hour shift....only 14 hours to go!!

Sunny days...oh how I love thee!

We have an elementary school right across the street from our neighborhood so I've been taking the boys there when the weather has been nice. Today we had a perfect day for some playground fun. It was a tad breezy but all in all it was gorgeous.

Wyatt loves all of the playground equipment and can't decide what he wants play on. An attempt of a nice picture of me and Wyatt....the stinker wouldn't look at the camera!Me giving O an attack of the kisses.....he was laughing and trying to wipe them away....but he secretly knows that he can never escape my love for him! :)Wyatt being terrified on the swing.

Me and O-Man.

Owen really loved the tire swing.

I would give him a big push, then run over to the huge slide next to him to make sure Wyatt was okay. I think I got my workout in for the day.

The boys loved this slide.....

Wyatt trying to lick his snot from his runny nose.

Owen giving me a smile.Wyatt coming out of the tube slide. Owen coming down a long curly slide.

Owen telling Wyatt that this slide was "safe" for him to go down....they went down together, it was cute!

Wyatt running away from us.....he was headed to the next playground area....this kid is fast!

Owen helping, I mean, pulling Wyatt off of the slide.

I'm so thankful for days like today.

Beautiful sunshine + Quality time spent with my boys = PURE LOVE

Wyatt 23 months

Wyatt was 23 months yesterday....yes on Friday the 13th....he was born on Friday the 13th two years ago in May..... Kris and I can't believe how HUGE he is....and SOLID too! He was in need of some more diapers and I ended up buying size 6's because the 5's were a tad tight.

Anyway, I caught him sitting like this is the playroom today and couldn't resist taking a picture of him....so cute!

Update on ME!

Well, I think it has been a long time since I updated anything about ME lately. And seeing that I can't sleep and blogging helps to ease my mind, I figured this early morning would be the perfect opportunity to jot down how I've been doing along with some recent updates.

I had an appointment with my Rheumatologist right before Thanksgiving. I was swollen again and sore so she upped my steroids over the holidays so that I would feel "good." And good for the most part is how I felt. I started tapering down again on my steroids starting in January and thought that the Enbrel injections may have been working, until I completely stopped the steroids in February and noticed a decrease in swelling but that the pain was back....not full force...but definitely noticeable enough to affect my everyday life.

I had another appointment in February and my doctor again increased my steroid dose and also did some more blood work that had to be sent to the Mayo Clinic. It took about a month to get the results but when they did come back they showed an elevated IL 6 cytokine. This was interesting information for my doctor and we had a lengthy conversation about what this meant. The long of the short of it is that this does give new information into what we need to treat. We have been using biological agents known as TNF blockers but really so far it has been trial and error to see what will "work." And so far, not much has helped other than the steroids.

So- you would think this is good news, right? Well it is, yes! I mean, we now know what we need to target and treat.....BUT the drug to treat this is an infusion medication.....and I'm scared! It's as simple as that!

The home page for this medication has a HUGE pop up that you have to scroll down and accept the terms before you can enter the site. And of course it isn't like..."this medication is fabulous and you will be immediately cured and your hair will be back to normal again, and you won't have any more pain or inflammation....and you definitely won't gain or lose any weight....and it's so good that there aren't any scary risks of increased infections that can/will occur including cancer or lymphoma.....and we promise that this medication won't cause DEATH."

IF that is what I read, I probably would have probably started the infusion therapy and said to myself, this sounds like the real deal.....BE GONE autoimmune disease, rid my body FOREVER!!

Unfortunately the list of scary potential side effects go on and on.....and it specifies per my husband, that you may experience an allergic reaction to this medication on the first or any subsequent infusion that may result in death.

Ummmm.....hello....it terrifies me to try something like this with the casual "may result in death" clause.

I mean, I get that all medications come with risk, and that obviously the pros definitely outweigh the cons, but I just am having a really hard time letting myself think it is okay to try/start this. I get all sappy thinking about not being there for my boys....and again I know I am in God's hands but still.....

SO I'm at a stand still at this exact moment. My doc is encouraged to try the infusion and feels we have nothing to lose, other than my life, pardon the pun! She finally feels that we know what we need to treat/block and that this is a good thing.....but at the end of the day this is not a CURE for me, it is strictly a new medication regimen to TREAT/DEAL with a disease that is not all that fun to deal with.

Moving on to good news, I met with my nephrologist last week and she said that I was doing so well on their end and that since my kidney involvement has seem to resolved that I will be free from their care for one year and will only have to do follow up blood work/urine samples at the lab in between my visits. And it was the only visit since my hospital stay that they said they felt that they didn't need to do a kidney biopsy to see what was going on......Well done body, thanks for resolving my kidney issues! Now I'm not afraid to pop some IB Profen when I feel sore....

That's my update in a nutshell. I've come to the realization that I can manage this disease/condition/disorder. I just can't do cartwheels or play golf or do much that involves my hands, wrists or arms for a long time period. And I'm okay with that. There are still a lot of ways for me to be actively involved in Owen and Wyatt's life and to maintain a normal appearance for those who don't know me well.....life goes on and I will get through this......

If you pray, please continue to pray for peace about what to do regarding this infusion therapy drug.....I could certainly use it as I've been kind of anxious lately about it.

Thanks and happy Saturday! This is the one of the few times that I wish Owen was up right now so I could have someone to talk to, but yet again the silence has been blissful this morning.......

Another beautiful day

The boys are on spring break this week so I met up with my brother and his boys today to get out for some fresh air. We went back to the local park and played for a while. Then we headed to the lollipop store and bought some "tutti frutti" lollipops and then walked over to Dairy Queen for some ice cream. After the DQ we walked further into town and checked out the fire station. They have a piece of metal from one of the World Trade Center buildings set up as a memorial. We explained to the boys what it meant and what happened on "911". I was surprised at how interested Owen was in this....he kept asking more questions....some to which my brother and myself didn't have answers to.

When we came home we made some lunch and as we were sitting down to eat Owen said to Kris, "daddy, you know like a hundred years ago there were these bad guys and they drove their airplane into these buildings and killed lots and lots of good people. And I saw one of the pieces from the building today." After we were done eating Owen wanted to see pictures from that day....we told him it was a very sad and scary day and that a LOT of innocent lives were lost. I'm sure he didn't really GET IT ALL....but for him to be that interested in what happened shocked me!

While we were looking at the memorial one of the firetrucks in the background turned on its siren....Owen was spooked! Here is Wy-man pointing at one of the firetrucks.

Here are all four boys by the memorial.

So it was a good day, we had lots of fun....ran off some calories, burned some energy and had a little history lesson too!!