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 challenge....to 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 (http://www.nationwidechildrens.org/gd/applications/greetingcardpro/choosedesign.cfm)
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