Thursday, December 31, 2009

Day 4: Sinai PICU (Skilled Nursing development) #SMA

Emily has continued to improve today and we've managed to come down near baseline on her BiPAP settings. :)

Now, the HOT HOT news for today is that, with this recent hospitalization, CareFirst has determined to extend Emily's Skilled Nursing benefit 30 more days! So we'll now have some wiggle room to figure things out further while maintaining the level of care Emily needs. We thank God for this decision today!!

Thanks for your thoughts and prayers!

- Posted from my iPhone

Tuesday, December 29, 2009

Day 3: Sinai PICU #SMA

Emily had a pretty good day. We were able to ween her O2 down to nill and started coming back slowly on her BiPAP settings. She is still pretty junky and we are pulling some very thick mucus out of her lungs, but the worst is definitely behind us now.

We know when we're over the hump when Emily starts getting bored and expressing regularly. :)

Monday, December 28, 2009

Day 2: Sinai PICU #SMA

Diana actually let me sleep most of the night last night, and I did -- like a baby - but grown up and on an awkward chair/bed thing with non-breathable fabric that makes you sweat when you're actually cold.

Emily, on the other hand, had a decent night and and even better morning. She's so pampered. ;) Her xray this morning look MUCH improved from yesterday and externally her chest looked more squared out then when her lung was collapsed. This is good. We were able to ween her Oxygen all the way back to 2.5 and she rested a bit. We had a semi-good B'day lunch for me -- and then things went south.

Emily had a pretty bad crash today and, in typical style, it was just after Diana walked off the floor. That's fine, but when she crashes it's nice to have two people. So, I yelled for help as Emily stopped breathing and her Oxygen saturation dipped into the 50's. :/ Sheesh! Thankfully we are Cough Assist ninjas and I got to work clearing some pretty serious mucus plugging out of Emily's lungs. When on the road to recovery JUNK starts to move in the lungs -- and migrating junk is like debris in a flash flood -- it's not good. In this case we were victorious and now Emily is trying desperately to get some sleep. It's not over yet, pumpkin. :/

That's the life of a family with Spinal Muscular Atrophy (SMA) in the PICU. Emily's on 3 different antibiotics and so far her blood and mucus cultures are all coming back negative. They may not reveal anything since we were on meds for a week before admitting to the PICU. Anyway, the bottom line is THINGS ARE IMPROVING -- despite how it may look, like earlier today, we are in an upward trend. :)

Thanks for stopping by.

Sunday, December 27, 2009

Day 1: Sinai PICU #SMA

So here we are - another Holiday season in the PICU. This will be the third year in a row, different hospital each year, that we've spent my B'day and New Year's night at the hospital. But, do you know what?! It's worth it as long as we have Emily with us! :) In fact, I think the only major holiday we haven't spent in the PICU with either Linnea or Emily is the 4th of July.

Anyway, poor Emily has a partially collapsed right lung with all the associated problems -- 4L of supplemental O2, increased BiPAP settings, lots of coughing, very very thick secretions, etc. We're doing treatments every 2 hours with the PICU staff and getting a bunch more cultures to see what's growing. Regardless, she is on Tamiflu and a new antibiotic. We're here, which is good. They cleared a bed for us b/c they were full, which we are incredibly grateful for. I am SO happy that we decided to not go back to Hopkins and found Sinai!!

Saturday, December 26, 2009

Going to the PICU :/ #SMA

We're heading to the PICU. Some sickness came on Emily pretty quick this evening. More to come...

- Posted from my iPhone

No, Mr. President: John Piper's Response to President Obama on Abortion

Tuesday, December 22, 2009

A quick December update

I've been putting this off with plans to post pictures, but here's a quick update without the pics.

We've been working hard for over a week to keep Emily out of the PICU. She's still been suffering frustrating coughing spells and thick secretions. Respiratory treatments every 2 - 4 hours around the clock seem to have been working, however tiring it may be to keep that up. Emily is on the mend, however, and it looks like we will be home for another Christmas. Yay!!

Thanks for checking in and Merry Christmas!

- Posted from my iPhone

Wednesday, December 16, 2009

You are not going to believe this... #SMA #insurance #CareFirst

Guess what! -- According to CareFirst BlueCross BlueShield Health Insurance, Emily has no medical need for skilled nursing care. Yeah. I'm not kidding. The letter of denial says that the Medical Director reviewed our Letter's of Medical Necessity submitted by Emily's Dr. and LPN nursing notes provided by our nursing agency to determine the following:
... The services provided by the private duty nursing are considered custodial. The patient received oral suctioning multiple times a day, occasionally nebulizer treatments and basic positioning ...
If THIS is what he determined from the paperwork submitted, I can only assume that he did not actually read any of it. Insane. The LMN's and nursing notes are EXTENSIVE - not to mention the common medical knowledge available about Spinal Muscular Atrophy (SMA)! Not only do they show that Emily requires frequent suctioning, 24 hours a day, to prevent Naso-pharyngeal aspiration, oxyhemoglobin desaturation, bronchial infection, pulmonary failure, hospitalization, or death - they also show that she is:
  • dependent on mechanical ventilation when sleeping and sick - provided via BiPAP- or she will go into respiratory failure
  • continuously fed via gastronomy tube b/c she has no ability to chew, swallow, or protect her airway
  • dependent on routine pulmonary treatments multiple times a day to include chest physiotherapy, nebulizers, a mechanical cough assist that is deadly if used incorrectly (or ambulatory bag), and postural drainage
  • highly susceptible to respiratory infections such as Influenza and RSV
  • unable to have a bowel movement without intervention
  • dependent on vigilant skin care and repositioning to prevent breakdown due to diminished tissue turgor and immobility
  • dependent on parents and caregivers for all activities of daily living
But there is more... the letter also gives examples of what IS considered medically necessary for skilled nursing. Among them are the following that, WITHOUT A DOUBT, apply to our situation:
2. Levine tube/gastronomy feedings.
3. Naso-pharyngeal and tracheotomy aspiration.
!! But, since this is the denial following an appeal, CareFirst will no longer hear anything on this case and we are forced to go through the process of submitting a formal appeal and grievance with Maryland Insurance Administration.

It is hard to believe that a company like CareFirst can get away with such blatant disregard for medical evidence and patient well-being. Throw in the added complications associated with the multiple severe disabilities Emily has and it is purely unethical at best. Decisions like these that deny medically necessary services to a child like Emily cause irreparable difficulties in her life and our family.

We are pursuing a few options to resolve this issue that I will not go into via the blog.

Monday, December 14, 2009

A great day! #SMA

Well Diana and others were praying hard and, we had a great day. I don't know what happened, but last night's symptoms played little to no part in the day. It's possible we thoroughly cleared her out, but we are just thankful it was a good day.

As we started the evening Emily was understandably tired since she hardly slept at all Sat night. She had a low fever, but that's it. None of the glue-like secretions!

Sleep well my pretty little girl!

- Posted from my iPhone

Sunday, December 13, 2009

Sick again #SMA (maybe #RSV)

Well this stinks. Emily appears to have come down with RSV. We do not know for sure, but the glue-like secretions, come-and-go fever, high Heart Rate, High Respiratory Rate, labored breathing, etc -- all indicate something like RSV anyway. Our insurance company finally overturned their denial for the RSV vaccination last week, but it appears it may have been too late - you know, b/c Emily isn't "high risk" for getting RSV. :/

In classic fashion, Emily is in good spirits. Every year we deal with these scarier illnesses she's a bit older, so the experience is always new.

Anyway, we're doing more frequent treatments (~Q4) with thinning nebulizers like Pulmazyme. She's tolerating her feeds well, so hopefully we'll just get through this thing sooner than later. We've been on the phone with our PICU in case we need to bring her in though. Nothing like another Holiday season in the hospital to continue the Lee Family Christmas story!!! ;)

Tuesday, December 08, 2009

A new site for Linnea #SMA

I just launched this "new" site for Linnea using Google Sites. Basically I took the content from the old page and gave it a new look - and it is now accessible via I think it's easier to look at. :) I've been wanting to move the information for quite a while. I may add some more information or thoughts about her to the page from time to time, but for now it serves as an historical digital momento of our life with Linnea. We still miss her each and every day.

If you are looking to create some simple but nice pages for yourself - check out and you can always let me know if you need some help.

Peace <><

Tuesday, November 24, 2009

Happy Anniversary!! 8 big ones!!

Happy Anniversary, Diana!!

What an amazing 8 years it's been. I can't believe we've already lived a lifetime of events. What in the world can our future hold?!

You complete our awesomeness. {wink} ;) {smooch} :() {heart} <3 {cool} 8) {me} {:)->--< {you} <:p->~~<

- Posted from my iPhone

Friday, November 20, 2009

Happy days :: #SMA

Well Emily is back to her normal self and better. It's so good to see her well. We are going to e taking it easy this Winter though. Avoiding crowds, enclosed areas, etc. School becomes a bigger challenge with all the sick kiddos, as does church and spending time with other people in general. So, if you dont see us around you'll know why. :)

Today we received a letter from Make a Wish letting us know that Emily qualifies to make her wish!!! Yay! They'll be contacting us in a few days to get to know us and find out what Emily's wish is (psst! We're talking Disney World!). We have heard so many great stories about what this organization does for kids like Emily. Can't wait to see how it all plays out. :)

- Posted from my iPhone

Tuesday, November 17, 2009

Please help our friend! :) #SMA

---- From a friend ----

Hi all:

This is Brenda emailing from Nationwide Children's Hopsital in Columbus, OH yet again. I am writing to get your help.

MJ was re-admitted to the hospital after 2 weeks at home after battling H1N1 at home, along with a lung infection (psuedomonas) and a GI virus. Right now, MJ is battling pneumonia, the psuedomonas, and an UTI. The doctors have decided to give MJ's belly a rest and she is now off GI food and getting food via her veins (TPN). MJ has been refluxing since then (we guess her belly really wants to eat or something, but it is clearly not happy.) She has aspirated some of the reflux as well - hence the pnemonia.

Anyway, MJ's doctor (Dr. Shell) issued MJ a get 80 cards sent to her by tomorrow. Cards are printed out around 9am, so he issued MJ a challenge. Upon card delivery tomorrow, there should be 80 cards brought up. He does not believe that 80 people would send MJ a card. Lets show him how wide and big the world is. Please help and show Dr. Shell how many people MJ knows. Send it on to your friends too. Thanks.

1. Go here to create a card (
2. Choose a card from the selection
3. On the next page, you have the option of using the default image, choosing from the ‘card’ gallery, or downloading a picture (one of your own or one from the internet)
4. The info you will need:
Patient’s first name (top line) - MJ
Patient’s full name - MJ Purk
Patient’s room number - T5103

NOTE: Any cards not printed tomorrow morning will be printed Wednesday, which will be great, too.

That’s it - and feel free to pass the info on!

If you prefer, real cards can be mailed to:
Nationwide Children's Main Campus
c/o MJ Purk, Room T5103
700 Children's Drive
Columbus, OH 43205

Monday, November 16, 2009

Hope for Emily Jewelry - Winter 2009

Hey there - I wanted to quickly announce that Diana has started selling the Winter '09 collection of Hope for Emily jewelry. Hurry to get your order in!! Orders must be received by Nov. 30th to be ready for Christmas!! Don't delay. Use the links on the RIGHT of your screen to see the collection and make your orders.
  • The best way to order the jewelry is to view them online and email Diana the item number, with the amount of jewelry you want, and let Diana know when you want the packaged received by.
  • Place your orders by November 30th, 2009 if you want it by Christmas.
  • **If you need a different metal hook please indicate that in your email. There will be an additional $2 charge for Sterling Silver, 14k Gold, etc.**

Wednesday, November 11, 2009

Keep on keepin' on #SMA

Hey folks, we're doing pretty well these days. Emily has been spending less and less time on BiPAP, she's much happier and interactive than the past couple of weeks, and hopefully she'll be back in school this week or next.

Thanks so much for keeping us in your thoughts and prayers.

There are no recent updates on the nursing situation, but we are thinking hard about ways to get these people to appropriately understand Emily's medical needs.

- Posted from my iPhone

Saturday, November 07, 2009

The Flu: One week down (#SMA)

So we have we've made it through a week of Emily having the Flu!! Yay! - and she is on the mend. Although still very junky in the Upper Respiratory area she has remained relatively clear in her lungs and has remained in pretty good spirits despite all the hooplah - that being the kind of constant sickly activities that would normally wear someone to a pulp like forced routine coughing, suctioning down the airway, chest physiotherapy, and more. You go, Emily-girl!!

Contrary to our good care of Emily, our insurance company is threatening to cut back nursing services bc, oh, we should "consider ourselves fortunte to have had it at all." Call me crazy, but there is something fundamentally flawed with someone who hasn't spent even 1 second with Emily making decisions to cut back services on her care b/c they think they know what she needs. Hey CareFirst, why don't you go suck a lemon!! ... Errr, I mean, send someone down to hang out with Emily and see how long you last. No joke. Anytime you want to fail more miserably in life please stop by b/c I gaurantee you can't do it... And neither can most homecare nurses, so don't get picky about Emily's services until you know what we're up against, firsthand.

Anyway, that was the very nice version of my vent. Some others bore the brunt of it earlier today. Let's just say I didn't not swear a little or go on a little and have to take very deep breaths and think of happy places in order to calm a bit. Never in life does man feel more primal than when his children are threatened by others. If it was necessary, I'd rip my arm off (the left one) and beat you with it for my kids.

Oh kay - now that we have that out of the way, please continue to keep us in your thoughts an prayers. We have some insurance challenges ahead of us that do not lend to great household stability in the emotions and communications department, but life will go on whether we're ready or not. I don't honestly know how we'll manage if they make unreasonable changes to Emily's nursing though. She'll have to kiss education and peer interaction goodbye. So much for all the development and progress we've made this year :/

- Posted from my iPhone

Wednesday, November 04, 2009

Even while sick... #SMA

Even while sick we do try to get out and about for Emily's sanity and ours. Emily's all hooked to van power while we're out getting Annabelle to her various social engagements.

Today was still full of coughing. She's tried so hard to sleep, but no dice.

Thanks for your comments and prayers!! We're working hard to keep this from turning bacterial.

- Posted from my iPhone

Tuesday, November 03, 2009

Still home and holding out

Hey! We're still home and holding our own. Emily's had some junky days filled with coughing, gas, and more coughing. A lot of suctioning, respiratory treatments, and BiPAP time seem to be doing the trick though. Diana is the one to praise for this - she is a great mom. She is tireless in her care of Emily's 24hr needs that only some of you can even begin to understand.

You know, comparing sicknesses now with ones in the past - either they are milder of Emily simply handles herself better. As she has grown she has learned to better control certain muscles, even in their weakened state, to keep her airway clearer than she used to, and it even seems her coughs are more productive. Not necesarily stronger, but better timed and such. But maybe we've just lucked out for a bit.... or we're doing what is needed to make it as easy as possible - "easy" in our world, not the normal one.

Anyway, any assumptions are that this is H1N1, but I still wish we knew for sure. Oh well.

- Posted from my iPhone

Saturday, October 31, 2009


A quick update. Emily's been fighting what we've been treating as a Sinus infection for a couple of weeks. Friday was her last dose of antibiotics, but a new sickness has started and the symptoms are very flu-like. :/

We started Tamiflu in the middle of the night and things have already started getting better. I don't know if it works that fast, or if she's got something else, but we're in crisis mode around home and awake at all hours while we respond to Emily's needs and try to nip this in the bud.

So we have no plans to go to the PICU right now, but they are aware of our situation and ready if we must - in which case we'd head to Sinai Hospital. The Flu has a nasty way of throwing wrenches at the best intentions. We're hoping this is mild, whatever it is.

Thanks for checking in.

Tuesday, October 20, 2009

Getting back to the basics

I have recently discovered this blog has become less of what I intended it to be. I am not sure how to maintain a good schedule of posting, but I want more than anything for it to be informative about our life, not necessarily our actions and other menial daily happenings.

So, dreams. People affected by tragedy have them - and they're not always very fun. I'm no psychologist and I have no statistics, but my dreams can be disturbing and in some ways numbing. They usually don't recall past events, but project the possibility of future events -- and always with hopelessness and failure in some fashion. Like not being able to correct a wrong, even though you know how, b/c you don't have the tools you need to make it right. I may go into more detail about that some other time..... but dreams, although not "scary" to me, can leave me stunned in wonderment for way too long.

Emily: We've been fighting what seems to be a sinus infection. Of course we worry about H1N1, but it doesn't seem to be that at all - I think it would be obvious. She's remained fairly happy amidst the extra treatments, and assumed headaches,, and we hope it's over soon.

Other than the sickness we're on the path to getting her powerchair soon, and she continues to go to school 2-3 times/week. Awesome!

Annabelle: 2nd grade is a busy year!! Piano, Gymnastics, Chinese language classes, Pioneer Girls, HOMEWORK -- crazy - but I think the TV is on less. :)

And Diana and I are hanging on for dear life. I have my SMA projects with and other ideas, and Diana handles the rest of the responsibilities like keeping us all fed and alive -- AND her jewelry making has picked up again, so think about what you'd like to order for Christmas!!!

I promise I will post some cool pictures soon -- gotta grab some time to get them off the cameras.

Peace <><

Monday, September 21, 2009

Remembering Linnea #SMA

Today, 9/21, we remember our precious Linnea Grace - 5 yrs ago today she met Jesus.

Thursday, September 17, 2009

One tooth, two tooth. Right tooth, left tooth

Pretty soon they'll all be gone!

Monday, September 07, 2009

Hanging on the Potomac. :) #SMA

Emily loves the boat! We don't get out much, but when we do it's an
event for sure!

Saturday, September 05, 2009

Belly taking Em on the Carousel all by herself :) #SMA

Thursday, August 20, 2009

Sleeping so sound w/out BiPAP: #SMA

Usually we only get to see Emily sleeping with her BiPAP on. Such a
sweet face - so peaceful.

Sent from my iPhone :: Peace <><

Tuesday, August 18, 2009

A couple days of being home #SMA

We're home and having a good time. Emily is no longer on extra O2 and we're getting back to business as usual. Phew! The Zyrtec dose discovery was an important one for us and other's that deal with respiratory issues like ours. Also, if you're wondering what our home is like after these bouts of sickness, to the left you see a little window into our lives. Kids Monopoly all 'round! Just hanging out before bedtime. Don't you wish YOU were here playing children's monopoly?!

Anyway, we've got some Dr. appointments coming up and probably a sleep study and an MRI -- plans plans -- always with the plans.

Thanks for your thoughts and prayers and for the meals we have been getting from friends. Meals are SOOOO great when returning from the hospital. :)

Posted by Picasa

Sunday, August 16, 2009

Going home. #SMA #PICU

But there's still work to do.

Still here. #SMA #PICU

So we're still here and hangin out. We've made some changes to Emily's meds which is interesting -- 4 days ago we increased her Zyrtec dose, per Dr. order, and feel that the increase thickened her secretions causing low satting and respiratory difficulty. When you KNOW there is junk in there it is frustrating when you can't get it out. So, now her secretions have thinned and are flowing more freely - and we are getting plugs out so that is good. However, now she has a higher heart rate and low sats while we work the junk from her lungs. We're also adding Singulair allergy med and switched from Flovent to Pulmacort

Anyway, now we're not sure if we should go home today. While we wait and work, here's a pic of Diana, Emily, and nurse Christy.

Saturday, August 15, 2009

Hangin in there: #SMA #PICU

So all of Emily's labs have come back negative so far so we've ruled out major issues like RSV or Flu, but we're still dealing with a "sticky" situation - like her secretions clog the suction catheters
kind of sticky. She pretty happy and all, but still with the coughing and all... Not fun. Who knows what this is but we'll get through it I am sure, b/c her animals are keeping her company when we sit down to rest. :) >> thanks for your thoughts and prayers.

Remembering Linnea Grace #SMA

We are thinking of Linnea today. She would be 6!!

Friday, August 14, 2009

Admitted to Sinai PICU - #SMA

We've admitted Emily to the Sinai PICU b/c she is on 2L of supplemental O2 and will not come off her BiPAP accept to cough, which is very frequent at this point. :/ Otherwise her hear rate and attitude is quite normal - except when her foot is being squeezed for blood (see picture). We'll see how things go. We're as "excited" as we can be to return to Sinai b/c they are great and that makes us comfortable. (I'll be updating via Twitter as well -

Sick again #SMA

Hey everyone -- my how this Summer is flying by. Goodness! School is starting up again soon and we'll be getting back into the swing of things.

I started this post to give a longer update, but the important thing for you to know is that Emily has been sick for a week and we are considering admitting her to the PICU today b/c she will not come off BiPAP now. :/ She's had a nagging cough and a lot of secretions. Her heart rate has been good and her spirits have been up, but she is just so congested it's not even funny. Cough after cough after cough. Poor Emily. So, we're making our phone calls and plan on taking advantage of our Golden Ticket status, so we get to skip the ED and head straight to the PICU at Sinai Hospital.

Please keep her in your prayers - hopefully it will be a short stay. I'll let you know if things change one way or another.

Peace <><

Saturday, August 01, 2009

Daddy-daughter time. :) #SMA

Sent from my iPhone :: Peace <><

Sunday, July 19, 2009

Party Success!!! #SMA

We had another successful party with for Emily this year -- what a blessing!! We don't necessarily get to spend a lot of time with our friends that support us so much in Emily's care, so this is our big event to host as many as we can and throw a big party in honor of the Princess of the Month - EMILY! The weather was magnificent, the food was great, the company was top-notch, and most importantly -- Emily had a GREAT time with everyone.

Looking back on the past three parties, it was great to see Emily able to spend more and more time with all her guests each year. As she gets older her system seems to have stabilized for these Summer months and we get to do a lot more mingling that we used to. So, people saw more of Emily today than they have in the past.

Thank you all for coming, if you couldn't make it we missed you -- and look forward to another great year!! Here are some pictures of the event.

Saturday, July 18, 2009

Time for Emily's birthday party!! Every year is a big deal with #SMA :)

Wednesday, July 15, 2009


Saturday, July 04, 2009

Enjoying the show. Happy 4th!!!

Emily watching her first up-close fireworks show. Happy B'day USA!!!

Tuesday, June 23, 2009

Happy Birthday Diana!!!

Sunday, June 21, 2009

7 days. 7 states. We're home!!!!

Headed home from Families of # SMA conference

We had a wonderful time!!! It was great to meet everyone and make dome
new friends.

Saturday, June 20, 2009

In memory of Linnea Grace, our first daughter with #SMA

Our first SMA daughter, Linnea Grace, made the Angel Wings Awareness
Quilt!! Thinking of Linnea :)

Trying out the EyeTech eye-gaze system

As Emily grows her ability to communicate will become more difficult.
In fact, it already is difficult. Systems like the EyeTech will help
her communicate effectively with people and objects around her... Like
the Internet. We hope to get her on an eye-gaze system in the near
future. A big year for technology for Emily!!

Sisters holding hands

This is just too sweet not to post. Annabelle and Emily fell asleep just like this.... holding hands.

Friday, June 19, 2009

900 attendees at this year's Families of #SMA conference.

Wow. This conference has grown so much in just the last 3 years that
we've been attending. 900 attendees!!! Consequently, I also approved
our 900th member on today. :)

Testing out Permobil chair at Families of #SMA conference. Emily loved it!!

Emily just loves this. We're hoping to get this chair with some
modifications in the Summer sometime. It's the Permobil C300 base with
the Corpus Jr. seat and Microlite Switch. Good stuff. She did great!

Tuesday, June 16, 2009

Sleeping soundly. Annabelle LOVES to sleep next to Emily.

Annabelle is such a great sister. She just loves being with Emily and
this is a nice treat to sleep on the same bed with her.

We're doing well. Thanks to another SMA family, the Poole's, we get to
stay in a home rather than a hotel.

Thanks Cory, Katie, Avery, and Aubrey!!!

Peace <><

Monday, June 15, 2009

On the road to WI. Two content little kiddos. :D #roadtrip

Sunday, June 14, 2009

And we're off!! #roadtrip

Sent from my iPhone :: Peace <><

With the rack... #roadtrip

Sent from my iPhone :: Peace <><

Just the beginning... #roadtrip

Sent from my iPhone :: Peace <><

Wednesday, June 10, 2009

Can you help raise money for Eminnea, Inc.??

Here's a new easy way to raise money for Eminnea Inc. Just start using Yahoo! powered as your search engine and they'll donate about a penny to Eminnea every time you do a search!

In addition, do all of your shopping through their online shopping mall,, where you can shop at more than 900 top online retailers and a percentage of your purchases will go to Eminnea. You pay the same price as you normally would, but a donation goes to our work! Just be sure to select "Eminnea" as your cause!!

Here's the web site — You can also read about GoodSearch in the NY Times, Oprah Magazine, CNN, ABC News and the Wall Street Journal.

Saturday, May 23, 2009

Big sister help #SMA

Annabelle is always eager to help, even when it comes to pushing Emily and her heavy medical stroller. Annabelle, you ROCK!!

Sent from my iPhone :: Peace <><

Friday, May 22, 2009

1st Grade: Author's Tea

They do some pretty fun stuff at Annabelle's school. Today was Author's Tea where each kid read a story, authored and illustrated by THEM!! Pretty cute. Annabelle's story was, "Dot Lady."

Sent from my iPhone :: Peace <><

Thursday, May 21, 2009

Modified power chair Em's been practicing on.

We're getting Emily fitted for a Permobil power chair, so in the meantime she's been driving this make-shift chair at her elementary school. She LOVES it... and she is quite good. They are short on different types of driving switches, but she doesn't mind b/c she doesn't know otherwise.

Anyway, I don't recall the details right now, but you are looking at a TumbleForm secured on a power char with a couple of adaptive switches for going forward and turning Right. The reason she needs the TumbleForm is b/c the chair does not tilt or recline for proper seeting for Emily. It's a great rig for her to practice. So, we're praying that our insurance company will not makes our lives to difficult in the process of ordering the right chair for her. They are notorious for rejecting the notion that Spinal Muscular Atrophy (SMA), Type I kids even have the ability to drive. They typically do not feel it is in their best interest to potentially spend tens of thousands of dollars on mobility for kids like Emily. We will FIGHT though, and I am preparing for battle.

Sent from my iPhone :: Peace <><

Saturday, May 16, 2009

Shen Leu Kwai Luh, "Pwau Pwau" - Happy Bday, Grandma!

Sent from my iPhone :: Peace <><

Sunday, May 10, 2009

Happy Mothers Day!!! W/ some new homemade jewelry :)

Sent from my iPhone :: Peace <><

Thursday, May 07, 2009

Families as Faculty Program

We had our first visit as participants in the Families as Faculty Program today and it was pretty cool. Basically, strangely configured and intensely needy families like ours get to host medical students to talk about our experiences with the medical community, good and bad, and how we have survived. And, as many of you know, there is not enough time in the world for us, let alone any other special needs families, to talk about our experiences. We are an E N D L E S S supply of information and opinions about the medical community. As Family as Faculty participants we have hopefully joined the ranks of those that influence the next movers and shakers of the medical community.

Today's visitors were soon-to-be 4th year medical students from the University of MD interested in Neuro Surgery and Neurology - so they're interests are more closely aligned with our Spinal Muscular Atrophy (SMA) ridden, neuro-centered world than some other diseases they might see - But with a Pulmonary-focused treat that they may have not expected. We live for adequate Oxygen exchange -- it RULES!! Atelectasis = BAD!!

We gave an unexhausted account of our life with SMA and tried to focus on what we have learned - and also what we feel characterizes a "good" doctor. I am sure they're heads were spinning. We often get the question, "do you guys have any medical background?" which is always fun - ok, selfishly it makes us (me) feel really smart. :)

Anyway, it was a good meeting and we look forward to hosting more students. Whenever we get one-on-one time with younger doctors it is fun for us to see them learning. Gotta run.

Peace <><

Saturday, May 02, 2009

It's the simple things. A smaller bipap means more can fit on the vent tray!! #specialneeds

We just switched DME companies and the new one is giving us this fancy
new and smaller BiPAP, VPAP ST. It takes up less space on Emilys
stroller, and one less outlet, which is going to be great for
travelling. :) Cool beans!

Sent from my iPhone :: Peace <><

Friday, April 24, 2009

I love my kid's improvements to my face! #fatherfriday

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I love watching by girls enjoying themselves! #fatherfriday

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Saturday, April 18, 2009

Making Gak at #CKK : Elmers glue, food coloring, liquid starch

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Friday, April 17, 2009

Woodworking at Camp Courageous Kids

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Made it Camp Courageous for Kids - #specialneeds weekend for #spinalmuscularatrophy weekend

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Thursday, April 16, 2009

Its a ritual...

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Friday, April 03, 2009

Home at last :D

It is true -- we are home at last. That was the shortest PICU stay we had ever had, and the best! Even in hard times there are "perks" to life. They just tend to be odd perks in our life.

So, Emily has made it through RSV and Influenza this year without being intubated. All managed via BiPAP, Cough Assist, and regimented respiratory therapy/maintenance -- AND while starting school and experiencing a good life for a disabled child. I can't help but
reminisce about the Hopkins Dr's trying to convince us to trach Emily last year b/c she had "No cough reflex whatsoever." The pressure was on us, but we stuck to our guns and I think we're doing well -- nay, I think we're doing better!!

She'll still need some More BiPAP time and her settings are higher; but in good time, and with good respiratory maintenance, all will be back to normal soon... normal for us anyway.

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Wednesday, April 01, 2009

A good night

Diana reports that Emily did very well last night (I'm at home). She's back on room air and things are looking up. Maybe we just had some plugs to take care of yesterday and that was it.

So, we are planning our getaway!

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Tuesday, March 31, 2009

Stupid Influenza :/

Emily had a rough night Monday night and is now on 3L of O2 to keep her sats above 94%. We ramped up her respiratory treatments to Q2 (every 2 hours) and continuing antibiotics. The suggestion is that she has a super infection on top of Influenza, so antibiotics are important at this point. They also took her IV out last night and now they're gonna have to get another one going b/c we may need better hydration and nutrition if we can't keep her calorie intake up enough b/c of all the treatments. We stop feeds during these treatments so she gets way behind, and that is really not good for her.

So, needless to say, we won't be going home today. That sucks.

Please keep her and us in your prayers.

Peace <><

Sunday, March 29, 2009


Thanks for all your prayers and well-wishes. It turns out Emily has Influenza B, so that's what we're dealing with. Not sure if she had strep and now the flu -- regardless, she's doing ok. We're not on any O2 and the Q4 treatments seem good, but we're gonna watch her and see what if we can determine we'd be better off at home. She's tolerating her feeds well and generally in good spirits, despite not really wanting to come off BiPAP.

The big news is that we have found a hospital that we will be returning to, Sinai Hospital. A couple SMA families have used Sinai and said good things about it - and after some research we decided to try it out this time. Amazing! They're doing an incredible job caring for us and working WITH us in every move. They are very family friendly and ready to follow our lead. They've created an "Emily Book" full of our Non Invasive Ventilation protocol and other Spinal Muscular Atrophy (SMA) care info, so ANYONE that is going to deal with us and Emily can read things over first. They've also given Emily a special status that allows us to skip the ER and admit straight to the PICU in the future. We just let them know and they'll get everything for Emily's arrival as long as there is an open bed. Very cool b/c the ER here was less than impressive.

Anyway - unless I'm dreaming you can imagine how nice it is to be treated well in our circumstances and not have to argue with medical staff about what Emily needs. We've even learned a few things from the Respiratory Therapists since being here. :) Even though they have not seen a Cough Assist here for many years (or at all) they love it and have caught right on. Good stuff.

Hoping to be home soon, but not rushing things. Peace <><

Saturday, March 28, 2009

Still not sure what's up.

We had kind of a standard, uneventful PICU day - which is good! Emily's secretions are getting thicker for some reason, but still not sure why. We will get some cultures back tomorrow, so maybe that will tell us something. She was generally happy today and got a lot of sleeping in. Her lungs are clear as day and her O2 sats have only really dropped a little and come right back up with a little coercing of the cough assist and suction - and, of course, good respiratory treatments every 4 hours.

So, the fevers have not come back, so that is a relief. All the rest is a mystery - we usually land in the PICU b/c of desats, junky lungs, fevers, and "normal" emergency stuff like that. But it all makes sense. This is rather baffling, but maybe we'll see some sense when labs come back.

Oh! It's always nice when you can learn new tricks from a PICU b/c usually we're ready to pounce on any shinaniggans. The Respiratory Therapists here at Sinai have been great and taught us a couple tricks regarding nasal suction -- I call it "irrigating the nose" -- effective. Maybe I'll post a video, but essentially it is squirting saline in one nostril while sucking it back out of the other -- I may start doing it to myself! (allergies). Also, being here where we can stay in Emily's room and everyone is paying attention (and we can still do a lot of her stuff) has been way better for us. When it comes down to it we don't really want someone else touching Emily (for our sanity and their's) so this more personal setting is better. BUT, we've not experienced a MAJOR emergency here, so that would tell us on another level that we can skip for the time being. :)

So - we're hangin here. Annabelle is with some friends and will see Grandpa and Grandma in the next couple of days. Thanks Vandenheuvals for giving her a second home! :)

And thank you everyone else for your thoughts and prayers and for checking in on us via Twitter and Facebook! :) Hopefully we'll be going home in a couple of days and this is nothing b/c we caught it before it became something.

Peace <><

Sometime off BiPAP. Keep it up Emily!!

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Friday, March 27, 2009

Admitting Emily to PICU

We are admittig Emily to the PICU right now. This is after 5 days of antibiotics and fevers and will not come off BiPAP. Tests look "normal" except white blood cell count is low. I'll be updating via
Twitter (and Facebook) which you can see on the left side of this screen. Thanks for your thoughts and prayers.

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Friday, March 20, 2009

March Updating

Emily's been driving a powerchair at school!!!..... and like it's no big deal. :) Everyone has told us when our kids start getting into powerchairs and learn that they are somewhat independant they "grow up" and start talking more and stuff. For us, Emily is not a talker -- she's 3.5 but has a very difficult time forming words -- but she has been a chatty Kathy lately -- LOUD. Amazing she can get as loud as she can when her lung volume is so small and weak -- so we thought anyway. It's been great to have a little bit of change in the regard.

She has also been doing incredibly well on the supply of breast milk we are working through. I think we've successfully made it through a sickness that could have been worse - - hard to say for sure, kinda speculation, but she's been gaining weight and has way more energy. Our insurance company tells us there is "no scientific proof that breast milk is beneficial to kids," so we can't get funding from CareFirst.... bummer for us -- and I'd hate to work for a company that makes such idiotic claims as that - I pity them. Regardless, we have some incredibly promising breast milk donors, so thanks for your prayers and ideas in that regard.

Thanks for checking in! Peace <><

Monday, March 09, 2009

Nothin much better than sisters :)

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Thursday, March 05, 2009

Emily Rolling

Incredible! Emily's been working on rolling at school for a few months now and she's got it down pretty good. Kinda looks scary, but she's tucking her arm and rolling her head over to get her body to follow down the little ramp. Doesn't take much strength as the head is so heavy, but takes some determination! She was so proud of herself, as were the rest of us. I wasn't there b/c I have to go to work :/, but I get to see the video. :)

Wednesday, March 04, 2009

International Night at elementary school. Scandanavians Rule!! :)

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