An Introduction to Spinal Muscular Atrophy #SMA

What I love about my family #SMA

A note from Emily's big 8-yr old sister, Annabelle:

I'm Annabelle and my sister Emily is a Joy to have in my life. Another joy is the music in my family. My family has great musicians! I love my family so so much they cheer me up when I'm down! Definitely, Emily is one of the first people I go to when I am hurt. I live with my sister Emily, my mom Diana, my dad Nathan, and my two fish.

That is what

I love about

my family

It's double V-Day!! #SMA

That's right! It's Victory Day AND Valentines Day. :) We're heading home from the PICU.

We are still waiting to hear back on some lab results for infections, but the Tobramycin and Orpred have either worked or Emily's just getting over whatever she had. Either way, we will be home in a few hours.

As always, thank you very much for your thoughts and prayers.


- Posted from my iPhone

Waiting on lab results #SMA

Emily had an ok night. She's getting respiratory treatments every 2-4 hrs and needs quite a bit of coughing, but she's so happy - probably b/c we said "No IV's this time." I'd be happy too. :)

So they've ruled out RSV and the Flu, so we're waiting to hear back about Pseudamonas and some other nasty stuff. Regardless, we've started Tobramycin and Orapred to try an kick whatever this is.



- Posted from my iPhone

Taking Emily to the PICU... #SMA

So, we're off to the PICU again. Yay. :/


- Posted from my iPhone

Snowpocalypse 2010!!!

We are COMPLETELY enjoying this huge snowfall. This is the part of God's creation that I am most fond of. :) Emily's sick, so we didn't get to do much as a family outside, but we managed to snap some pictures. Hopefully we won't be stranded at home too long, but the electricity is on and our utilities are working... we're doing just fine.

MRSA and Lyme and Snow, OH MY! #SMA

Ugh. Please keep us in your prayers. Diana has tested positive for Lyme disease and MRSA; Emily has come down with something that caused a major desat at 2:30 this morning; and we have snow headed our way which brings some anxiety if we need to get to the PICU in a hurry. Poor Annabelle is an infected finger too, let's not forget about her needs :/ We're tired. Thanks.

January was full of surprises (#SMA)

I can't believe this month is over. I also can't believe how hard it is to consistently blog, so Good On Ya, mates, that have the personality and tenacity to keep your audience stimulated.

We've had a whirlwind couple of months with an incredible amount of emotional and intellectual stock invested in Emily's well-being. Let's just cut the story short and say that I hate mankind. We suck. Our ability to make extremely complicated systems that cripple the GOOD in this world gives me a perpetual need to vomit. It sucks that we have to FIGHT for good, while the bad just has to exist to screw things up.

Now that I have that out of the way -- this month has been spent battling for Emily's life -- but what's new, right? After MANY phone calls, emails, faxes, text messages, appeals, calling people on lies, recalling and recording Emily's history, and so on.....

Emily has been accepted onto the Maryland Model Waiver for 8 "global hrs" of nursing, per day, 7 days/week. - which means any time of day! And, CareFirst has agreed to cover 12 global hrs until she has transitioned onto the Waiver, until 2/26.

I have to say -- I thought I would faint or something when I imagined getting news like this. But to be honest, after my small victory breath, but my neck and back muscles remained rigid and my mind turned to the other things that haven't been settled - as well as the unexpected surprises that we have yet to face.

HOWEVER, getting Emily into the Medicaid Model Waiver program is a big win for us. We met with our new coordinator yesterday and it was so incredible to hear that someone is going to help us with the constancy of Emily's plan of care, and fight on our behalf to get the things we need for Emily.

The nursing battle isn't over yet. I have also appealed the Maryland Insurance Administration's determination that b/c Spinal Muscular Atrophy (SMA) is terminal, they will not enforce services such as nursing. Insane. So, out of principle, I will continue to fight these issues and hope to help prepare a more friendly state for other families in situations like ours.... more on this point at a later date.... we have some buns in the oven, so to speak.

Emily's power chair is also supposed to be delivered in the very near future. CareFirst came through on that one and Emily is getting a very appropriate chair for her needs! This will be great for her by giving her some ability to exercise more and more independence. I can't wait to post video of her zooming around. :)