Anxiety

Before I forget, here's what happened last year on May 2: my dad and Larry got to see Emma for the first time!  Definitely one of the best days of my life.

And here's May 3, 2010 and May 4, 2010.

The anxiety I'm referring to in the title of this blog is something that I shouldn't be worrying about right now...but I am.  Some of you may remember that we banked Emma's cord blood that contains her stem cells.  Sometime last fall I made contact with the mother of a 5-year-old child with spina bifida...we'll call the little girl Stella (this is one of my favorite little girl names, but Russell doesn't like it).  Stella's parents banked her stem cells as well, and they finally found a hospital in northern Mexico (yes, Mexico - I don't know all the details of why) who would implant Stella's stem cells.  Stella's mom keeps a blog, and this is the latest that she posted on April 15, 2011:
"I HAVE SOME GREAT NEWS!! "STELLA" IS POTTY TRAINED!! I TOTALLY ATTRIBUTE THIS TO THE STEM CELLS! Prior to stem cells "Stella" could feel her stool, but could not feel when she had to urinate. Since her stem cell procedure she can now feel when she has to pee. She has gone several days without an accident, and she can hold it until she gets on the potty. She can not fully void her entire bladder and has to push with her hand on her abdomen to help get it all out (a much better alternative to catheterizing). NO MORE DIAPERS!!!!!!!!!!!! I am so very proud of her, she works so hard. This is a MIRACLE!!!!!!!!!


Also, "Stella" has been working hard at strengthening her buttock and hamstring muscles. After a couple of weeks there is a definite difference. These are the muscles that "Stella" needs to strenghten in order to walk more. She still consistenly can take 4-5 steps on her own at at time."

So why does this stress me out a little?  Because a long time ago, I felt led to bank Emma's cord blood for purposes just like this.  Actually, I didn't feel led - God all but spoke aloud to me.  Emma's neurosurgeon has told us that stem cells will not work on spina bifida kids' spinal cords because "that horse has left the barn," meaning that stem cells can only fix DAMAGED nerves, not nerves that were never in tact in the first place.  Of course, the world used to be flat, too, right?  We have many more critical hurdles to overcome right now before getting into this stem cell business, but it's in the back of my mind.  I've gotten pretty good at only worrying about Emma's issues when I absolutely have to, but this one is getting to me because there's not a lot of guidance, support, history, standard operating procedure, or even geographical proximity for this particular "project"!  Which means that so much of it would fall on my shoulders.  And it sounds like getting support from Dr. Troup might be difficult - and that scares me because I trust him implicitly.  My prayer for now is that a few more kids will get this treatment before Emma would be eligible so that there will be more results (and hopefully success!).  Stella was the first one to receive the treatment in Mexico, and her mom was going to work on getting it several other kids involved.  So anyway, that's what's been on my mind.
 
Monday night, Emma went to sleep at 8:45 and woke up at 5:30 am Tuesday morning.  Not crying, not whining, but talkingtalkingjabberingjabberingtalkingtalking.  With the BiPAP mask on, which I imagine can't be easy.  I talked to my mom a little after 9:00 Tuesday morning, and she was still going strong.  I'm afraid for me and Russell's sake that the mask is giving her better sleep, resulting in earlier wake times!

So, moving on to a much more pleasant topic: Emma crawled tonight!  More than army crawling, but not quite up on her hands.  She crawled on her knees and elbows, which counts, if you ask me.  And I'm the mom.  So I'm right.

We, unfortunately, didn't get exciting video because it totally came out of the blue.  But we did get some video of something pretty funny that she has done for a while now, but she's been doing it with more gusto lately.  My mom says she has a temper...and OF COURSE she has a temper.  A few older family members who are no longer with us were notorious for their tempers....and they shall remain nameless.  This 3-minute video is quite representative of a typical day with Emma - staring and waving at a camera (and Daddy), ignoring you when you want her to do something until SHE'S ready to do it, being inquisitive and determined, talking and grunting in her own language, clapping and doing touchdowns, and pushing Mommy/Nan/Daddy's face out of the way.  All of that, in a 3-minute nutshell.  And yes, that IS the Braves game in the background.  I think it was the Braves.  I was too busy taking care of our child to pay attention to baseball.  If Russell really reads the blog like he says he does, that remark will get a rise out of him.

Tomorrow morning is Emma's swallow study to establish a baseline swallowing ability before she starts her VitalStim therapy.  I feel like she's had 20 of these (I think it's actually only about 3), so I'm not all that nervous about the procedure...it's just hard to actually see liquid start to go towards her lungs in real time on a tv screen.  So anyway, hopefully, she'll have improved a little on her own since the last swallow study.

That's it for tonight...long entry.  That means it's bedtime.