A Bright Day for my Superhero.

 It's been a whirlwind of a few months.  Anastasia started her Remicade treatments at the end of March and it seemed to be working well, until we got to her dose that was 8 weeks apart. Then I noticed a regression.  

Guess what...according to her bloodwork she had no trace of the medication left.  So her next dose will be upped.  She is starting to lose her hair again.  Which means after 3 years we are going back to dermatology.  It was a fight to get an appointment but thanks to Dr. B they fit her in.

But this is going to be a happy post, Yesterday we all took a trip to the new Legoland theme park that just opened up in Goshen.  The best thing is that we totally surprised her!  

I had bought our tickets last month, got a bit of a discount thanks to Hallmark perks, but I didn't tell her at all.  The main reason is if I told her when we were going I would have heard her counting down or not sleeping until we went.

My plan to keep it a secret was simple.  I lied and told her we had a fun day planned with my friend Amanda and her son (sorry Amanda lol).  When we turned in she goes um...why are we turning into Legoland?  I was like oh we're at Legoland?  She says yes and Alex and I go, well we aren't meeting up with my friend we are going to Legoland!   

She was so happy!  We had a blast!

And yes it is a theme park so it is expensive but it honestly was worth it to have my daughter be able to be an excited kid for a day instead of having to worry about all the medical crap going on in her life. 

Tired of Waiting, but I will Wait Anyway

 3 weeks ago we got the bad news that Humira is not the answer to Anastasia's GI problems.  She is such a unique girl that her body is rejecting it.  So now we had to make the decision to start her on Remicade.  

The first step of this process was to see if she needed anymore bloodwork, she did.  So we took care of that on Monday.  Now we just wait to see if insurance will approve it.

Then more waiting.  Once we start treatment she will have a 2 hr infusion.  Then 2 weeks later another.  After that we wait 4 more weeks for another, then after that she ideally will have infusions every 8 weeks.  I pray it works.  I am tired of this issue.  I am tired of my child feeling so sick because her body is not right.

The only thing that makes me okay with starting this treatment is that Ana told Alex and I point blank (when asked) that she knew Humira wasn't making her better.

So now I ask anyone who reads this just say a prayer or send us positive thoughts, karma, or pixie dust (or whatever you believe in).

Ana has been through so much in her almost 9 years of life, I just want her to be well.