Saturday, January 23, 2010

Happy Birthday Annabelle!!!

Our big girl is 8!!! Annabelle, you are the most selfless little girl I have ever known. You are a blessing to us and everyone that meets you. Linnea and Emily are SO privileged to have you looking out for them. :)

- Posted from my iPhone

6th Place for Gwendolyn Strong Foundation and #SMA

CONGRATULATIONS Gwendolyn Strong Foundation!!!!

Well, It's OFFICIAL! Take a look at and you will find that the Gwendolyn Strong Foundation has won 6th place and $100,000 to accelerate a CURE for this cruel disease called SMA.

Not only is this $$ for SMA research, but in INCREDIBLE effort means of spreading awareness about this terrible disease. Thanks for all the votes, thank you for spreading the news about SMA, and thank you for participating in our lives and the rest of the SMA community! :)

Thursday, January 21, 2010

It's not too late to #VoteForSMA!! #SMA

Hey everyone -- I am PLEADING with you to vote for SMA in the Chase $1MM giveaway on Facebook if you haven't already. Please take a moment to head on over to and cast your vote which could win the SMA community $1,000,000 that will go towards research and family support for this terrible disease. Remember:
  • SMA is the #1 genetic killer of kids under age 2
  • 1/6,000 kids are born with SMA (that is an estimated 10,000+ kids that die each year from Spinal Muscular Atrophy!)
  • 1/40 people carry the gene responsible for SMA. That could be YOU
  • There is NO TREATMENT and NO CURE for SMA :/
  • BUT, NIH says SMA is the disease closest to a cure.
Please vote and tell your friends. Voting ends tomorrow, 1/22! Also, head over to the blog to read more about this competition. The support we've generated for SMA through social media and networking is down right AWESOME!!

Friday, January 15, 2010

Vote for #SMA !!!

I really really really want to tell you about the eye-gaze system Emily tried out today, but I want even more for her to not need one.

So, PLEASE vote for Spinal Muscular Atrophy (SMA) in the Facebook Chase $1,000,000 giveaway to help find a cure for Emily's disease, the #1 genetic killer of kids under two - which has already claimed the life of one of our precious girls, Linnea.

NIH says SMA is "the disease closest to a cure"!

Don't delay, and please spread the word.

- Posted from my iPhone

Tuesday, January 05, 2010

A Sovereign Surprise

-- A message to my family from my dad --
Dear Friends and Family: Some of you know I appreciate Proverbs 16:9: "In his heart a man makes his plans, but the Lord determines his steps." I remind folk that God is a "Sovereign Surprise" God in that most of us could never have planned how our lives turned out!

Well, my life has been wonderfully surprising in every way...but now I'm facing another surprise: I've been surprised with the news that I have prostate cancer. Wouldn't you know...those with this cancer in their family (my Dad had it but did not die from it), Scandinavians, and just plain old American men are all good candidates for it...I happen to fit all three. This was not my plan for the next chapter of my life, and, as some on this email have experienced, this is a surprise I could have done without. There's good news and bad news:
  • the good news? It's been caught early thanks to a PSA test (men - be sure to get that annual test!). I had a biopsy and a very small percentage of the 2 (of 12) tissue samples had cancerous cells. Early detection is always good news with this cancer.
  • the bad news? I have cancer...the #2 men's cancer, in fact. It's definitely deadly if not contained.
Nancy and I go to Walter Reed on Jan 4 for a day-long consult where all the options will be spelled out. I also hope to go to Johns Hopkins Cancer Institute tor a second opinion. My research so far tells me major surgery may be in the plans...

I'd ask for prayer as I comprehend the prognosis and treatment options. Pastor John Piper wrote a piece on cancer just before he went in for prostate surgery some time ago. One of his points was "You will waste your cancer if you do not believe it is designed for you by God." What else can we think but that this, too, is a "Sovereign Surprise" from the hand of God? Pray I will practice what I preach!

Your love and friendship is cherished...may all the Sovereign Surprises in your lives not surprise you too much... and may these celebratory days of Christ's birth bring you much joy as you enter the new year!

Blessings, Doug

Douglas E. Lee

Saturday, January 02, 2010

At Home and More About Skilled Nursing... #SMA

First -- Emily is home. Not even 2 hrs after arriving at home Emily's oxygen saturation started dropping and her heart rate started climbing. Ugh. We thought maybe she caught something while in the PICU and now it decided to show itself to us. We packed everything back up and started arranging something for a very sad almost-8-yr big sister. SUCK! We decided to continue at home and do treatments all night with supplemental O2. That turned out to be a good decision. Maybe Emily was just REALLY tired or something, but we are back off O2 and she has been quite happy today. Her BiPAP settings are still elevated, but that's ok for now.

Current Nursing
: Like I said, after submitting a new request for nursing since we were in the PICU, CareFirst extended the benefit for only 30 days. In the meantime, our primary nurse is not available for the next 2 weeks, and there are no backups. Yay. :/ So, we now we are switching agencies b/c in the last year the current one hasn't staffed one new nurse that has stayed with it. Ahhhh - so we have NO nurses, and will probably have to train new ones while in recovery from the PICU - while maintaining her recovering ourselves around the clock. Tis life. Not sure how that is going to work out.

Nursing Grievance & Appeal: So when all this crap started I submitted a formal "Grievance & Appeal" with the Maryland Insurance Administration (MIA). They gathered information from us, CareFirst, home nursing agency, and our Dr and contracted a third party reviewer, MAXIMUS CHDR. So I was informed that they determined there is "no skilled nursing need" as well - but I wanted written acknowledgment of Emily's needs with an explanation as to why there was no qualifying medical needs. Today I received that letter. I'll summarize a few things here.

The letter provided thorough acknowledgment of Emily's needs as we had presented them. A Pediatric Neurologist was consulted for the review, which I think it unfair b/c SMA families primarily deal with Pulmonologists b/c the complicated care of SMA is mainly Pulmonary as a result of muscle weakness. So, there is no reason for maintaining health, and ultimately life, when you look at SMA purely from a neuromuscular standpoint. There is no therapy that is curative in nature for SMA, so neuromuscularly there is nothing to be done.

The medical evidence has nothing to do with neurology!!

In summary, MAXIMUS determined the following:
... there is no known cure for Spinal Muscular Atrophy (SMA) ... consequently, Emily's care would be considered "custodial in nature and not therapeutic" ... the care is "comfort care and is not curative in nature" ... so, skilled private duty nursing services are not needed and "home health aids would be more appropriate to help manage her care."
So, there you have it. Based on some neurologists recommendation, since SMA is not curable, otherwise qualifying needs are determined to only be for "comfort." Translation: Because Emily will eventually die from SMA, CareFirst is not responsible for providing life sustaining support b/c it is not "therapeutic" or "curative." Is that a loose interpretation? I don't think so. So, MIA has determined there is no medically necessary need for Private Duty Nursing and CareFirst is off the hook.

Special Note: This is how one part of our government system has come to the conclusion that Emily's care is being properly rationed by CareFirst based on their beliefs about her survivability -- in other words, they are determining how we can care for Emily due to her diagnosis - NOT her medical needs. There are other parts to our government system, however, and I plan to become quite familiar with them in very short order. This is not over yet!

Friday, January 01, 2010

Going home!! #SMA


- Posted from my iPhone

Day 5: Sinai PICU (going home...) #SMA

We've decided that it's time to go home. Emily will still require more frequent treatments and increased BiPAP time, but we can manage with the home nursing and she'll be more comfortable there anyway. :)

So, time to go!! Thanks for all your thoughts and prayers. I'll try to update as the days go on.

I wanted to note a couple of things we have learned while being here:
  • Emily loses about 12oz/day of fluid through drool and suctioning. The staff was worried about Emily retaining water, so we did some science by weighing drool napkins and measuring the suction cannister. Add in sweating, breathing, and diapers and you get a much better measurement for fluids lost
  • If we bleed O2 into Emily's BiPAP tubing, 4L of extra O2 only amounts to about 31%. Keep in mind that 21% is room air. So, 4L of supplemental O2 may not be as much as you think.
  • A good way to maintain calories even when doing so many treatments like this is to use less water in the feed mix and supplement with IV fluids. That way you can run a slower rate and not worry about missing calories at the end of the day.
- Posted from my iPhone