Break Time! (more or less)

We're moving...well, not really. I've been procrastinating (surprise), but we are now set up on a website for all things Aida. I'll continue to post updates on Facebook, but the site will allow you to sign up for email alerts when I've posted. There are a few other features we're excited about as well, so please visit us there... www.AidaRebecca.blogspot.com

It was a fairly good week last week by all accounts.  On Wednesday, Aida's numbers had "jumped" a little, so we got a day off from clinic (2 days without transfusions).  When we returned on Friday, her platelets had actually increased a tiny bit. Her fibrinogen (always the most challenging) had dropped but was still higher than it had been being when she was getting product every day. And all this after 2 days off! (Just a note - good numbers for Aida are still below "normal.")  So they "tanked her up" on Friday for the long weekend. It is sooooo wonderful to be at home instead of clinic. I'm a tiny bit nervous about her counts when we go back but definitely hopeful. She hasn't gone 3 days without getting blood products in over a month. Regardless, the break from clinic has been phenomenal. Meanwhile, all of my immediate family (and spouses) were up at one point or another during the last week...even my then 6 week old nephew! He's so adorably small that our steroid baby (who is only 5 weeks older) makes him look - and FEEL - like a toy.  :) Everyone wasn't here all at the same time, but it felt a lot like Christmas - presents and all! :)

We've met with surgeons here who want to do surgery to remove a couple of the large lesions outside her body. We all definitely want the biggest (outer) one removed as it has begun to impede her head movement some. Still, we're not sure if this is surgery we'd do here or in Cincinnati - or when. The doctors here want to do it soon, but we're discussing with the doctor in Cincinnati what the plan might/should be. Her steroid dose has been reduced a little because the side effects become riskier the longer she's on it (approaching 3 months.) It's a necessary and inevitable change, but I'm a little nervous though since in the past it seems to be the only thing to have a significant effect. We're praying that the chemo has begun to work, and that is the reason for improvement in her numbers...or just plain healing, of course. If not, if the steroids are the only thing helping, we'll be in for more tests and possibly surgeries. In the meantime, we're more or less holed up except for visits to the clinic since the risk of infection for her is high. Sorry to all our local friends...we've become even LESS accessible. We love and miss you all!

 I forgot to mention last time around that the MRI showed that she has lesions in her bones as well...further stumping the doctors. They've seen it before - sort of - but not like hers.  Feels like a broken record. If tapering the steroid leads to growth, they'll likely biopsy one of these in the bones, which is apparently fairly simple - or possibly the liver. The doctors here and in Cincy aren't 100% in agreement all the time, so that is a little frustrating. Understandable but frustrating.  In other big-ish news, transplant surgeons in Cincinnati have said they can do surgery to remove the tumor if need be. (We're NOT talking about a transplant - just some extra skilled surgeons.) Again, if things don't continue to improve, this may be part of the conversation again as well...not somewhere I'd like to go. 

And on the home front, we are in for some new adventures. It turns out, TN allows for 4 months maternity leave - meaning I have through July 1st. Such a blessing! I'd been told this before she was born but hadn't really thought about it since I didn't expect to need it! Of course, this is not paid time, but it does give us a little more time with benefits...most notably insurance. Please be praying with us about the financial challenges we're about to experience - opportunities for us all to see God's grace for sure! We have been very blessed up to now and are doing our best to trust God to provide the manna we need every day. As Mark likes to remind, God will be glorified in all this because there is NO WAY we could do this on our own. In the end, taking care of our little girl is all we're concerned about. I believe that He gave her to us for a reason, and He will provide for her care (and ours). She has good days and bad and some in between, but the little windows of coos and grins and laughs sure make it all a little easier. :) I just want to eat her up! I can't tell you how thankful I am that God chose us.

One last note...several people have commented that all the smiley pics make it hard to believe she's enduring what she is. To be sure, we count it as a blessing that her beautiful face does not reflect the craziness that is in and on her body. Besides, healthy or not, I imagine most parents only share the "cute" pics anyway. :) But those who have had the opportunity to meet her can easily see what you cannot. Occasionally, there is a little something in a photo if you're looking, but the happy (and often strategically edited) photos are entirely intentional. I'll probably change my mind someday, but for now, I want all of you to focus on what we are believing for...a happy, HEALTHY Aida.