Wednesday, December 31, 2008

Sleeping so sound and relaxed. :)

Sent from my iPhone :: Peace <><

JCMC: Day 2

As we anticipate the worst of Emily's RSV in these next few days, Nathan and I are camping out in Emily's room, taking turns napping and keeping an eye on things, making sure Emily's treatments and such are on par. Nathan and I work well in these hospital situations.  I am thankful for my guy! 

Emily is on 45% O2, with non stop Bipap and treatments every 2 hrs. around the clock.  She has slept most of the day and has had a few major desats.  Her secretions are like glue, so we are doing our best to get them out.  She was awake this evening, played with her balloon and suction yankauer for a few minutes before that wiped her out and fell back asleep.

Thank you everyone for your prayers and support.  Annabelle is back in VA with her grandparents and cousins, so hopefully that relieve some of her heartache from being away from us.  That is one of the hardest aspects of this life for us.  Having to send Annabelle away all the time.  Every time she wraps her arms tight around my neck, not wanting to let go, trying to hold back her tears, it breaks my heart.  It's like we are making her grow up too fast. And she is so amazing about all of this. So in your prayers, please pray for us as well as Annabelle, for her understanding and her peace at heart.  It's been awhile since she has had nightmares, but she has had dreams about being left in the trash or pushed into the street and no one is there to help her.

Thanks for checking in and keeping up with our lives.  The blessings we receive are humbling and encouraging.  I always pray that we can be a blessing to those around us, somehow, because we are always in such need. : ) Diana

Monday, December 29, 2008

JCMC: Day 1

We are at Johnson City Medical Center Children's (www.msha.com/ch). We are enjoying this smaller scale hospital way more than a place like Hopkins bc the care is incredibly more personalized and even though we are the first noninvassive (NIV) Spinal Muscular Atrophy (SMA) family they've dealt with they are amiable to our deman...err... wishes. :) I had a couple of great conversations with Dr. Scroth (Peds Pulmo @ Madison, WI) about Emily's care here and that has been reassuring, to say the least. They're using Dr. Scroth's protocols for SMA kids and since Respiratory has never seen a Cough Assist we're training everybody -- ha -- too funny.

Anyway, Emily had a restless day of coughing and coughing and coughing some more. She had a rough time holding her sats for a while, but her end-titles and electrolytes and all the other stuff looks good, so we're doing the right stuff. We only know this drill intubated, so this is somewhat new to us too. Thanks for your prayers and notes of encouragement!!

Sent from my iPhone :: Peace <><

Emily has RSV :/

Hey all,

So, on our Christmas trip back from Nashville we had to make an ER visit for Emily. She has RSV. :/

We're still 6 hrs from home at this point. Not sure what we're gonna
do about this.

She doing relatively well, but we're getting lots of thick secretions out of her and we pretty much have to do all her treatments here at the PICU bc they can't hear her from their stations and all. Nice thing is they don't mind us doing what we need to, while Hopkins always fights with us.

Anyway, your prayers are welcome :)

Nate

Sent from my iPhone :: Peace  <><

Sunday, December 28, 2008

En route to Johnson City Children's

They were good to us at Bristol Regional. Time to go to a Childrens
Hospital. I hear they are good in JC... I am hoping that's true! :)

Sent from my iPhone :: Peace <><

Too cute not to post!!

I've had this picture on my phone and it's time to post it - our
oldest, Annabelle. She's nearly always good for an outrageous
smile. :). You bring us happy times, sweet stuff!

Sent from my iPhone :: Peace <><

Tuesday, December 23, 2008

Selected by elimination

We we've decided to go with the Pediatric nursing agency, Home Health Connection (HHC), for Emily's nursing needs.  I wasn't sure which way to go until I learned of the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO). The higher-class agency is not JCAHO accredited, so that made the decision easy.  

We are set to start services on the 24th, but we're heading out of town so that will give our nurses some time to get on board with the new agency --- yep, we have some great and committed nursing for Emily and they want to "follow" us to the new agency. :)  We are very grateful for them, indeed.  

Care First started this new relationship with HHC by telling them that they were going to put a 6-month hold on paying them for services, however. I wanted to scream.  Apparently the Med. Director of CareFirst has said that will not be the case, but HHC has to have it in writing before they can start on our case.  Hopefully that will be supplied by Tue morning sometime.  

So, that's the scoop.  There are inevitably more battles to be fought.  Next will probably be whether or not we get nursing during the day b/c CareFirst probably only wants to pay for nights -- when we could really use day and nights like we did with Linnea.  If these people would come and see Emily we may not be having discussions like these.

Thanks for your thoughts and prayers.  This transitioning has been frustrating and frightening.  

Peace <><

Saturday, December 20, 2008

Decision Weekend

Well, today is decision weekend for me.  Diana's busy at a wedding in CA and Monday morning the insurance company needs to know what decisions we have made for a private duty nursing agency so we can get the ball rolling.

I am mainly considering two agencies:

On one hand we have a Pediatric agency that has many cases in MD and the surrounding states and at least a few of those cases are with SMA families.  They are your standard good agency and very nice.  They feel confident they can staff our needs and are local.  In fact, they staff another SMA family's need that we are aware if nearby.  A less complicated case, but at least they know about SMA.  This agency will most likely pull from the same pool of nurses we have already experienced - and that has been hit or miss with us.  We are very picky and Emily requires talented and caring people. 

On the other hand I have a high-class agency that hasn't dealt with Pediatrics, but they specialize in ventilated patients and Alzheimer's cases - and many of their nurses do have Peds experience.  Why does this matter to me?  Well, Emily has many of the needs of a ventilated patient - but requires "more" support b/c she isn't actually vented, but is dependent on BiPaP 14-16 hrs a day when well -- more when sick.  She will stop breathing w/out it if falling into a deep sleep. -- Anyway, this agency mainly caters to the wealthier and older crowd, but after hearing Emily's case through an employee they said they'd be interested in working with us.  My main concern is the fact that they haven't had to staff any Peds cases, so would we have to deal with a learning experience that we don't want to, or can't afford?  They sound great and b/c they cater to "pay out of pocket" people they have a very high standard for nurses that they employ.

Tough decision b/c I enjoy the familiarity of the Peds agency, but am enticed by the stature and professionalism of the private agency.  What to do.....

Peace <><  

Friday, December 19, 2008

Nursing Coverage :: 1st issue :: Update

A quick update for anyone that is following.

After MANY MANY phone calls making it unequivocally clear that I was NOT pleased with the direction this nursing situation was going the contract that was written for a new agency has been put on hold and our current nursing has been extended through 12/23. This gives us time to 1) find a new agency, or 2) work something out with our current agency that will work for everyone.

We have to make a decision SOON, however, b/c everybody wants to put ridiculously restrictive time lines on us. Find a new agency and get our nurses transferred over to the new agency in... say, 1 day. Yeah right.

Anyway, they know that I will not sit here and let people make decisions for us without our involvement, so I think that is half the battle. We are not idle by ANY stretch of the imagination. The day ended with some good conversations and we are hopeful to have an appropriate plan of OUR choosing by early next week.

Thanks for your concern and prayers.

Peace <><

Thursday, December 18, 2008

Nursing Coverage :: 1st issue

Oh no you don't! Don't EVER EVER EVER make decisions about my daughter's life without my consent - EVER! I'd prefer you strap weights to my ankles and throw me in the ocean. DO NOT mess with my kids!

Care First has taken it upon themselves to select another nursing agency... to start tomorrow, without our approval! Oh, and by the way, the new nursing agency informed us that Care First will only cover night nursing as of 1/1/09. What gives them the right to make these decisions and inform other people without our consent? I didn't authorize anyone to pass on Emily's medical information to ANYONE! When they come down and spend spend some time with Emily MAYBE then they can make some decisions on their own, but probably not... ever. Until then Care First better get their ducks in a row b/c it AGAINST THE LAW to pass on information without our consent - and I don't think I've passed on any signed papers to give them permission -- much less any sort of anything that gives them the right to make decisions about my daughter's life and well-being without my consent. Got it?!

As of now Care First does not authorize our current nursing agency to continue staffing after today. If you have ever dealt with nursing (especially connected with Spinal Muscular Atrophy (SMA)) you can imagine how I feel. If you haven't --- hit yourself in the gut and then the head with a hammer... repeatedly... now imagine that is some random person you don't know is doing it and there's nothing you can do to get them to stop... they want you to give up. That's what it feels like.

Wednesday, December 17, 2008

Nursing Coverage Approved!!

Well, what a few weeks we have had. Due to my regular employer dropping the health insurance that covers Emily's nursing benefits I had to quickly find a new company to work for. That news was nerve racking. Very few insurances available through companies in our area cover Private Duty Nursing (PDN), much less all the other needs of a Spinal Muscular Atrophy (SMA) patient, so the task was daunting -- especially since people aren't necessarily moving between companies very easily these days.

We were very fortunate that a smaller company that contracts in my office wanted to hire me... and digging in their benefits showed us that their insurance provider, Care First (CF), would cover PDN for Emily. So, we started the transition (which is fairly involved as far as my job goes - and 1,000 x's more involved concerning Emily's medical needs). We received EXPERT help from the new company's insurance broker and MANY hours were spent to make sure the transition of Emily's care would work.

So, I started actually working for the the new company this past Monday - only to be told by CF that they would not cover PDN for Emily! Was I shocked? Nope. Unfortunately, I wasn't -- but I was very angry, I'll tell you that! Fortunately, I had spent weeks up until this point communicating with the insurance broker and new employer to create an extensive document trail showing CF that they WILL be covering PDN - we were ready for battle, b/c EVERY insurance company we have ever had to deal with has tried to deny Emily coverage for different medical needs. :/

Anyway, to make a long story short, our nurse case manager with CF presented our case to the Medical Director with documentation of Emily's needs and a Letter of Medical Necessity (LMN) signed by Emily's doctor and they approved to continue the 12 hrs/day that Emily is currently receiving. Yay!

We may still have to find a new nursing agency, but we're trying to work through some political issues to make that work out with our new insurance. For now, Emily has nursing coverage, and that means I can calm down... for now.

Peace <><

Monday, December 15, 2008

Sister time. Accompanied by Dora stories :)

Sent from my iPhone :: Peace <><

Friday, December 12, 2008

Wearing daddy's hat and lovin it. So what if it smells like my scalp!

Sent from my iPhone :: Peace <><

Friday, December 05, 2008

Dumbness

So - we've been having issues for a while here - Emily's doing very well, btw.

We've had these strange situations where Emily will wake up gasping and stuff -- very puzzling. Plus with the long sickness and stuff it's been weird.

Well - we discovered the other day that herBiPAP backup respiratory rate had somehow been set to 10 (vs the usual 25) and NO ONE has any clue when that happen or how. That BiPAP has recently come back from getting serviced a couple of times, but we set the settings ... or did we?! Ugh. Chances are we probably, for some unknown and insane reason, didn't reset her backup rate to the normal 25.

So, I think we can attribute some of these complications to this -- Emily will stop breathing when sleeping, we've seen it before. So, falling into good sleep at only 10 breaths/min could cause some issues. We're just glad she's doing as well as she is despite such a dumb mistake. It's strange when something like this happens b/c we're so meticulous with her care and equipment that we were immediately stumped -- like it'd be easier to think someone came in and sabotaged our BiPAP b/c we just don't do stuff like that ! Ha.

Anyway - thought I'd share our dumbness -- go check your equipment settings now (or if you're not an SMA family remind someone you know) - I know we'll be doing it more carefully from now on. {eyes rolling}

Peace <><

Sunday, November 30, 2008

For Emily bathtime means weightlessness. U'd b smilin too :)

Sent from my iPhone :: Peace <><

Friday, November 28, 2008

Annabelle insisted we start with the Christmas decorations :) Looking good!

Sent from my iPhone :: Peace <><

Monday, November 24, 2008

Earrings for SALE!

Diana has been working uber hard one making earrings to raise money for Emily's medical fund and for SMA research. She's done well at a couple of events so we've consolidated pictures of her work in some web albums to sell. I was hoping to have a site launched to sell them, but life events have made this difficult, so we're taking the easy road for now. :)

Are you looking for a nice gift for that special lady?? Hmm?? Well look no further than the albums below. Behold the beauty and affordability!! Place your order today by emailing Diana at diana@hopeforemily.com with the item number which is shown below each picture.














Saturday, November 22, 2008

Landsdowne Resort: alone for an afternoon and night. Second time away from Emily together in 3 yrs.

Sent from my iPhone :: Peace <><

Tuesday, November 18, 2008

Emily L-L-LOVES her swing time

Sent from my iPhone :: Peace <><

Monday, November 10, 2008

FALL

I have some pictures to put up but I've been slammed at work. There are more in our PicasasWebAlbums -- and here we go (there are some short thoughts at the bottom):

Veggie Tales Live

Emily and Mary -- Soooo fun to meet the Nelsons!!

Bob Ross, 50's girl, and our two cats

Nurse Krissy time!!

Daddy time

Fun at the farm with Mommy

Visit from our good friend Barry

Some sleepy time

Heehee -- fuzzy. :)

Annabelle's self portrait :)

The latest is that the company I work for is dropping the only insurance plan that covers Emily nursing and some of her DME. So, I will most likely be switching to another company very soon in hopes of finding the coverage that we need. This part is really not fun b/c insurance companies will say "sure, we cover that" and then they don't. So we are strategizing and figuring out what this means for us.

Also, Emily's been sick for over a month now -- three kinds of antibiotics and lots of night-time mucus plugging. Please keep her health and our sanity in your prayers. We DO NOT want to end up in the hospital this year!! :) Emily's fighting it with style and grace, but being completely helpless certainly makes that tough. :/ She's our little hero.

The rest is business as usual. -- not sure what that means, but I guess it's true.

Oh, Annabelle went to a sibling workshop at Emily's special needs pre-school this evening and watching her just reminded me again of what a blessing she is to us. Siblings of special needs kids are A-Mazing! Seriously. I can't imagine myself at that age having as much grace and poise in the midst of some truly frightening experiences as we have had in our home with Linnea and now Emily. Annabelle is special kid. :)

Peace <><

Monday, October 27, 2008

The girls ( courtesy of Nurse Krissy)

Sent from my iPhone :: Peace <><

Wednesday, October 22, 2008

The Beach!! <;)

Yup - we spent three nights at Rehoboth Beach in DE and it was great. Emily was already on antibiotics when we left, but all was well. We just continued her respiratory routine "on the road." Best of all, our newest nurse Krissy, and her husband have become good friends and they spent the weekend with us - even let us go on a date. Yeah, we just sat and stared at each other - actually we made fun of each other by smearing our faces using the FaceMelter app on my iPhone. So we ended up crying... but from laughter. And made our usual stop at the nearest Thai restaurant for some Southest Asian goodness. Yum Yum. No, that wasn't the name of the dish - the food was tasty. :) Here's a slideshow from our web albums:



Other than that - Emily continues to fight with something. Her O2 saturation will suddenly drop into the 80's with a horrible cough and some anxiety. We're getting big green thick plugs out of her, but otherwise she's happy - not miserable like when she was younger. So, we're working through it and sleeping attentively - yes, that is an oxymoron, but that's the way it is.

Annabelle's getting pretty good at her 1st grade reading, Diana is making some awesome earrings to raise money for Emily's Medical Fund and for SMA research (more to come on this), and I am working an additional part-time job and finishing my last stinking credit for school. Heh - don't even ask when all that happens cause I'm not sure.

Peace <><

Thursday, October 16, 2008

Fall Festival Funalicious

Sent from my iPhone :: Peace <><

Friday, October 10, 2008

First sand sculpture of the weekend :)

Sent from my iPhone :: Peace <><

Thursday, October 09, 2008

Yikes!

Holy Canoly -- It's been almost a month. I am a bad blogger. :/

A quick run-down:
  • I re-launched a new SMASpace for the SMA community. Check it out! www.smaspace.com
  • We are leaving today (Thur) for a 4-day weekend at the beach: our longest "vacation" in about 6 years!
  • We're scrapping our Honda. Repairs are more than the cars worth.
  • Emily's been kinda sick for about a week. :/ Nothing real severe, but you never know how these things are going to manifest themselves. Plus, she misses a lot of school with the combination of being sick and a lack of nursing staff.
  • I will be starting a part-time job soon.
That's about it for now. We're enjoying life as it comes. You do the same! :)

Peace <><

Sunday, September 21, 2008

Remembering Linnea Grace

It was four years ago,
on this 21st day,
that our Lord took her away.

She's always in our hearts and mind : but more importantly, she's perfectly in Heaven with our Creator and Provider of all things good! Thank you Lord for the blessings You provide, and for the wonderful time we had with your child, Linnea.



Peace <><

Tuesday, September 16, 2008

"Walking" in the pool

I wanted to share Emily's latest accomplishment -- "walking" in the pool. Check it out. For those of you that know us this is pretty fun to watch, considering how the last two Winters have gone for us. I want to send it to all the naysayer Docs out there that think that all we do for our kids isn't worth it. Emily is in pre-school at a special needs school in our county. She attends 4 days/week for a few hours. Two times a week she gets to use the pool. :)

Wednesday, September 10, 2008

Status Update

We're alive and well. Emily has started preschool and she is loving it! She's learning to take turns, so that is pretty funny. Other than Annabelle pretending they're in *real* social environments, Emily has never had to take turns with other kids. She gets a switch that says something like "let me see" and she hits it over and over when the teacher is do something with someone else. Too funny. She attends a special needs school in our county that is quite phenomenal. They mainly deal with sever cognitive delays, but at this point I don't think it matters all that much. They are able to accommodate Emily, her nurse, and Diana in a class with other kids, so it's great for now. She gets pool time 2x's a week and there are therapists there to try out chairs and standers -- it is what we have needed. I'll try my best to get pictures up soon, b/c I am sure my writing bores the poo out of yoo.

Annabelle has started 1st grade and is doing very well. She THRIVES in the social settings -- apparently that is genetic, but the jury's still out on that one. :) She's learning SOOOO fast and it's so fun to see. Plus, she's not afraid to show what she's learned, so that is a blessing. We're starting her in soccer this Fall and her first practice is Sat - so I'm a proud daddy. Next we start piano, but we have to get a piano. :/

Diana and I are plugging along. She's FULL-TIME involved with Emily, especially now that Emily is going to school 4 days/wk for 4 hrs -- it's tough and she is more tired than usual. She's a good mommy. I have been hired for a part-time job to make some extra bucks to pay for the gas to and from Emily's school -- so, life goes on. Not that we have any "extra" time for stuff, but it's amazing what you can find yourself doing to make ends meet, like Diana's sacrifice of sleep. I don't know how she's does it.

Anywho - things have been exciting, it's just been hard to get them out of my head. We're dealing with some bad gas issues with Emily and we're not totally sure what it is, but that's the ebb and flow of regular medical stuff that we deal with. She's had a couple of bad reflux's where she aspirated, but we got her all cleared out after a week or so each time. It's scary, but it's the way things go. She has just been so fun anyway, that we sorta forget the hard times.

Over the last few months Emily has suddenly become a little toddler. Not that she wasn't, but she has defined herself, I think. While she still can't get words formed for us to understand, she definitely gets her point across.

So - all-in-all things are good. Maybe a little on the too busy side, but ok nonetheless.
















How have you been? Let us know!!

Thursday, August 21, 2008

Crazy Frog Bros

I have to post this b/c i can't stop laughing. These kids are crazy. This video has been viewed over 10.6 million times!!


Saturday, August 16, 2008

Linnea

Work, or something, caused me to not post about Linnea's would-be-5th-birthday on Fri, Aug. 15. I wasn't sure if that was good or what. Maybe we've come far enough that we don't have to memorialize her B'day every year, but, we're not there. It's bugged me that I haven't put something up - like I'm cheating the memory of her or something. It's a mess of emotions. :/ We miss her, and speak of her often. Annabelle dreams of her, and everything from smells, to music, to events... everything reminds us of her. Our life with Emily is a continuation of our life with Linnea, but we still have Emily - after 3 years. :)

One day we believe that we will see Linnea again. Not in a mystical sense b/c it makes me feel good or something, but b/c we believe the Bible makes that clear. While I can't say anything with 100% certainty, it is our hope that what we believe logically, will be true in reality. Not b/c we believe it, but b/c God is good and keeps his promises. :)

So, here's a past slideshow of Linnea. I didn't put any music to it. I want to, but I don't think I will b/c it will never be good enough for our memories of our second precious girl, Linnea.

Peace <><

Sunday, August 10, 2008

Swiming and Tubing and School, Oh My!

If you are reading this you may be thinking, "it's about time! What have they been up to? :/"

Well, things have been good. As they say, "no news is good news." We've been having a good Summer. Since Emily's party we've been relaxing and getting some things done.

The biggest event for Emily this Summer has been her debut at the local pool. We finally ordered a swimming collar and tried it out right away at our neighborhood pool. She was a little nervous at first, but she absolutely loves the weightlessness the water provides her otherwise helpless little body. This is her chance to "swim" and she's pretty good. :)

Additionally, we started aqua therapy so every now and then she gets an actual therapy visit in a nice warm therapy pool. She just lights up in the pool. All smiles.

Other than that - I have finished my final college paper, so I have one test to go and I am FREE AT LAST!... and valid part of the working class. :/ Anyway, it's a B.S., appropriately... hehe, snort.

Finishing the deck was one of the major physical accomplishments for me this Summer. As planned, Mommy, Annabelle, and Emily enjoy it very much. It's quite nice to sit on the deck, swinging to the tune of "squeeek, squeeek, squeek!" Guess I have to fix that. Otherwise the deck has been a wonderful addition to our house/life.

Big things for this Fall -- Annabelle AND Emily are starting school on the 25th! Yes, indeed. We are excited and nervous at the same time. Excited that Annabelle will have something to do with herself, and nervous that school will bring sickness into our home. We're praying God will keep us healthy and strong this Fall and Winter. NO HOSPITAL VISITS!!!

Oh yes - before I forget :: If you've learned something about and Spinal Muscular Atrophy (SMA) and want to do something about this disease, please sign this petition to find a cure for SMA. Quite a few signatures have been collected so far. Please join us in petitioning our government to GET INVOLVED!!

And the tubing, of course. My family has a long history of boating and water sports. Annabelle simply LOVES it!

I had a lot of things I wanted to write about, but taking too long to get them on the blog has forced them to go elsewhere. Once I track them down I'll post them here.

Peace <><

Thursday, July 24, 2008

Emily's 3 yr party :: July 2008

We had a great party again this year. We had 90 somethin people in attendance from 5 different states -- all for Emily! :) God has really blessed us with friends that care for us and Emily - these parties are our way of hosting some of the folks that have been a help over the last few years and more. I wish we could always include EVERYONE that has been an encouragement to us and loving fans of Emily. So, without further ado - the pictures!

Tuesday, July 15, 2008

Yippee, Emily is 3!!

Our beautiful baby girl is three years old today!!! It has been an amazing journey, and we have learned so much about life. What's important, what is not. Who we are, who we aren't. What we can do, what we can't. What we can dream, what we can accomplish. What we love, what we need to love. Who God is, who He's not. What is love...baby don't hurt me, don't hurt me... no more.... uh - sorry. We have learned about love, though, what it is and what's it's not.

Emily's life, with God's perfect purpose, teaches us more than we can ever imagine. She is the center of our lives, which keeps us from centering our lives on trivial things. She teaches Annabelle to love, when a smile is all she can give in return. She defines Diana's purpose, and clings to mommy's love. She shows her A-yee (aunt Cindy) that she loves and trusts her every move, completely. She teaches me that NOTHING in this world matters more than what God has given us - and nothing is more important than providing for the lives He has given to me.

I made a video for Emily's special day... bear with me, it is long. Get some popcorn or something b/c it's 9 minutes. I know, just watch it. ;) I have to admit, I choked myself up with this montage - Emily's life has so much more meaning that I could ever attempt to portray through the internet... (if you can't view the video below here is an alternate link)




Emily's life events (I'll add more as I remember them):
  • July 15, 2005 :: Emily Hope Lee is born in Baltimore, MD - happy and strong - blood was drawn to test for Spinal Muscular Atrophy (SMA).
  • 4 weeks :: Johns Hopkins Hospital tells us that "Emily is fine - no SMA." We learn they did the wrong test.
  • 5 weeks :: Emily is diagnosed with SMA, Type I. The same disease that took the life of our second daughter, Linnea.
  • 7 weeks :: Our first visit to Primary Children's Hospital, Salt Lake City, to take part in Dr. Swoboda's clinical study for Sodium Phenyl Buterate. Visits continue for 1 year.
  • 4 months :: Laproscopic surgery for G-tube (feeding tube) and Nissan fundoplication at CHOP.
  • 9 months Emily begins g-tube feeds only :: swallow is lost.
  • 16 months :: First major sickness caused right lung to collapse - intubated at Johns Hopkins University Hospital. Major arguments with doctors and nurses about Emily's care, but we all survive. Emily lost a lot of weight and strength though.
  • 24 months :: 2nd B'day party. BIG bash - 100+ people!
  • 29 months :: next major hospitalization :: RSV :: almost lose Emily twice. More major arguments with Hopkins staff - after failed extubation we planned for air transport to Madison, WI. Reasonable doctors came on shift and we agreed on an extubation plan. It worked!! I hope the doctors were taking notes, and that they all learned some things from us that month.

Sunday, July 13, 2008

Planks and Screws

I wasn't going to work on the deck today, but I couldn't help it. All I have left it laying the planks and screwing a million deck screws. But, the satisfaction of seeing the deck surface grow is tremendous, so I had to keep going. 11 rows today.... 20 or more to go.


Peace <><

Saturday, July 12, 2008

Hit the deck!

I would never say that home repair is a hobby of mine, but looking at the last two years it sure seems like it. Finished basement, laminate flooring, kitchen redesign, wash and stain deck (which I will NEVER do again... if I can help it), some landscaping, etc..... :: most of which I could NOT have done without the help and guidance of incredible friends. Thanks to all who have helped me not completely screw up these significant projects!!

So to keep from getting lazy (and maybe a wee bit of ADD), I continue thinking of new projects. The latest is building a lower level deck beneath our existing second story deck. Seemed simple enough, and thanks to Chrystopher it won't be another unrealized dream. (I do realize that my eyes and heart can be bigger than most of my abilities in the area of home repair, but God always provides a good friend to help make my ideas work out. :))

Now, the great thing about this deck is that it will give us the ability to sit out back, out of the sun, as a family. We'll hang a bench swing and I'll probably put up a bolt for Emily's swing. With power access on the deck we can bring her equipment down too, if need be.

BTW
- Emily's doing pretty good, but fighting a cold or something right now. She's generally pretty happy, but requires some extra work, on top of routine care, to keep her O2 sats up where they need to be. She'll be 3 in just a few days!!! Incredible. :*)



Peace <><

Sunday, June 29, 2008

A good visit

Sorry for the delay. Our visit to Senator Mikulski's office went well. We were there with representatives from the four major supporters of Spinal Muscular Atrophy (SMA) research for a cure: FightSMA, FSMA, MDA, and the SMA Coalition. The meeting went well and we shared our story. :)

Let's hope and pray that meeting like ours happen regularly, where needed, and legislation is passed to empower research to find a cure for SMA.

The SMA Treatment Acceleration Act will provide the next level of national coordination and therapies for persons dealing with this horrible disease. Experts are confident that we are very close to finding a cure for SMA, yet research is sorely underfunded from our government. Additionally, research for SMA will benefit other forms of Muscular Dystropy, ALS (Lou Gehrig's disease), and various other incurable diseases.

We're anxious to see this pass!
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Wednesday, June 25, 2008

Meeting w/ Senator Mikulski

Thur we will be meeting with Senator Barbara Mikulski (D) and her HELP commitee in DC to talk about our experience with Spinal Muscular Atrophy (SMA). The meeting has been arranged by FightSMA and is important in the fight for an SMA Act to be authored and passed.

Hopefully our story, along with others, will get this thing going so our government will start funding research for a cure for SMA, the #1 genetic killer of kids under the age of two.

Medical advances have been made possible through the funding of private organizations like FSMA, FightSMA, and others, but more funding is needed if we're going to beat SMA, which also happens to be one of the most, if not the most, cureable of the known neuromuscular diseases.

Please join us in praying that this Act will be established and urging your government to establish an SMA Act.

Peace <><
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Monday, June 23, 2008

HAPPY 28th BIRTHDAY DIANA!!!

A HAPPY :: HAPPY BIRTHDAY TO MY WONDERFUL WIFE, AND AN AMAZING MOMMY TO OUR GIRLS => DIANA. :)

You are as beautiful as ever and full of wisdom. You take care of all our special needs, and you do it with an incredible display of selflessness and cheer. Thank you so much for everything you do.

We love you lots and thank God for your every day -- Nathan, Annabelle, (Linnea), and Emily.

The picture is from our trip to Thailand in '01.

Thursday, June 19, 2008

Boston!!

Well we're hear. Pulled in during the Celtics celebratory parade - didn't even knew they played recently :x

Anyway, we're hear and starting to meet some other families coming in from various parts of the country. Should be a good time.
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Hunkering

So, this is how we roll. We rarely stop for the night, but here we are, just into Mass-Achoo-sets. You're only looking at a small portion of what we travel with :: 3 suitcases, fridge, wheelchair stroller w/ gobs of medical equipment filling up the powerstrip and every plug in the room, etc, etc. It's like we're moving! LoL. To Boston we go, in the morning. Peace <><
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Wednesday, June 18, 2008

On our way!!

We're on our way to Boston! :) check my Twitter updates on this page for more frequent posts while we're on the road.


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Wednesday, June 11, 2008

Yeah for pictures!

Well I've gotta some fun pictures for you all this time. :) A quick update, though. Emily's doing GREAT! Ever since we figured out the allergy stuff she's just been doing really well. Trying extra hard to talk and being very verbal otherwise.

By this time tomorrow we will have met with our county representatives to decide Emily's Individual Education Plan (IEP), which many disabled families dread. I think we're going to come out ok, however, with all the plans we'd like to see for Emily to start Preschool this Fall! Don't worry, we'll always be with her. :)

So, Annabelle's finishing up school, I'm finishing up school, Diana and Cindy are both going to be starting school this Summer/Fall -- busy busy busy. All in all things have been pretty good and we thank God every day for the time we have with Emily.

In fact, things have been going well enough that Diana and I are about to head out for a 24 hr getaway, while Emily is cared for by her nurses and her aunt Cindy. -- first time getting away overnight in nearly three years, no joke.

On to the pics!!!


Linda and Beth, from Cole's Quilts, made Emily this beautiful quilt and delivered it to us a couple of weeks ago. Thanks so much you two, and Cole's Quilts. Check out their site if you haven't yet!

Hangin with mommy in the kitchen, you know, eating celery and stuff. :)

Apparently she likes Pepper's. And bright yellow one's. YUMMY!

One of our favorite smiles in the whole wide world!


Peace <><