a different kind of perfect

i'm a mom...on a mission...to enjoy life everyday...appreciate the little moments...try not to get so easily annoyed...raise my kids with a faith legacy that leads them to continue to be amazing people...and to make my husband feel as special as he makes me feel.

What is Cystic Fibrosis?

CF is an inherited chronic disease that affects the lungs and digestive system of about 30k children and adults in the US (70k worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that both clogs the lungs and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. [www.cff.org]

Thursday, December 29, 2011

so long...farewell 2011

2011 was a good year.  Uncle Stevie came to visit from California in February to kick off the year with some family bonding time.  Although, Owen took him as another wrestling challenge, Evie balanced out the madness by bonding with her godfather.

In March, we shared the story of how our baby Dean was diagnosed at birth with Cystic Fibrosis and how we as a family had spent the previous year understanding, accepting and making it a part of our lives.  We hoped by telling our friends and family that we could raise our goal of $3,000 to donate to the Cystic Fibrosis Foundation to fund vital research programs.  Amazingly, we raised $27,000.  Throughout our emails and subsequently our newly created blog, we've expressed our gratitude - however we're not sure if we expressed how completely that support helped us in feeling we have so many people lifting up our baby, lifting up our family and loving and supporting us.  That feeling doesn't have a price tag.  It's one that encompasses your whole body making you feel warm.  Dean turned one in March and continues to be an amazingly active little boy, currently cutting his molars, learning new words and just recently learned the stinkeye.


Dean's stinkeye
Evie turned 3 in May and her personality is just simply awesome.  Extremely independent, she is willful, precise and hilarious.  You can frequently hear her singing "I'm sexy and I know it" courtesy of dad's pop dance parties.  She's shyer than ever in her first preschool class but has made some new friends and continues making up friends and where they live (i.e., her friend Candy lives in Hawaii, Felly lives in Michigan, Stella in New York).  We're unsure if she needs more playdates or has the travel bug.  She takes gymnastics and just started karate with her big brother.  She'll do anything with dad and never wants to miss out on anything athletic.  My all time favorite quote from her this year came after she watched her favorite movie Elf about a go-zillion times.  She came running into the kitchen telling me "Mom, Mom, I think I broke the son of a nutcracker."  Here's a picture of her and the "Son of a Nutcracker"


We walked in our first Cystic Fibrosis Great Strides Fundraiser at the end of May; cold, rainy and surrounded by a group of the most amazing family and friends, team Eat. Pray. Dean. 



Cali turned 8 in July and got a room makeover from the O's - teal blue and scattered with Peace Signs.  She has grown up so much this year.  She is intent on pursuing being a singer/actress when she grows up and took part in a summer camp performing the Bear Went Over the Mountain as Mouse #2.  In January, she will have a role in the Children's Ensemble of the Sound of Music.  Cali continues to surprise us with her memory and is an avid reader.  She cannot wait to host another book club this winter, just got her first Nancy Drew series and loves to stay up late talking. 


Jim & I also celebrated 11 years of marriage this month - I love my best friend.  Enough said.

August threw some changes in our lives.   Dean's annual lung xray showed some mucus build-up in his left lung so we started a new series of treatments.  A nebulized medicine with the intent to thin any mucus in his lungs and The Vest to "hammer" the mucus out of his lungs.  He's awesome, takes it in stride and just gets that it's part of his daily routine now.  We also were fortunate enough to be able to help out with a neighborhood softball challenge that our subdivision organized.  Seeing our neighbors and then the greater community pull together to raise funds to help improve an aspect of a child life was humbling.  It's so easy to get caught up in the me, me, me and how I need to do this or that and you sometimes forget to think how good you have it, how awesome your life is and how helping others and giving back is what makes this world go round.

October is probably the only month that threw me for a fantastic loop.  I should have taken a picture but there was a crazy amount of antibiotics being administered among the normal meds around here.  50% of us on z-pacs at the same time and the introduction of Pseudomonas aeruginosa causing 2 more daily neb treatments for 28 days for Dean.  We got over it, the PA was cleared and I learned to NEVER again complain about the 30 minutes he does every day because it could always be worse.  I've learned that lesson a lot in life - there is always a situation that is worse off and one that is better but realistically, God only gives you what you can handle - you don't grow by dealing with the easy and normal; you grow with the challenges.  Granted, when all is well, it's awesome but challenging yourself, either intentionally or the challenges your given is another thing we've learned is important in growing up, growing strong and growing in our faith.

Another milestone, Jim celebrated the big 35 in October and the kids surprised him with 35 balloons stuffed in his car at the train station.

their proud selves after stuffing the car and writing on the windows!

Owen turned 6 this month too.  He's a sweetheart; forever concerned with others feelings and has a crazy head for numbers.  He's really into Wii, loves climbing trees, ranks as a camoflauge belt in karate, would do anything to be with his big sister and idolizes his cousin Danny.  He's got a sensitive streak that is frequently excited when dad teases him about his "girlfriends."  One of our favorite memories of this year for Owen is when a little girl came up to him and school and said "Owen, I like you and I want to marry you."  Owen proceed to say to her "You're too short (meaning too young)" and she replied with an "Owen, you are going to regret that!"  Already breaking hearts...




In November, Jim and I escaped with some of our best friends for 5 days of palm trees, sand and relaxation.  We had time to eat warm meals together, talk, swim, reunite.  How easy it is to neglect your spouse in the hectic day to day routine.  It was awesome getting to know each other again.  Of course, without the best Omma, Obba, Grandma, Grandpa and Gigi in the world we wouldn't have been able to do that so we are forever grateful to the way they came together and helped us enjoy our 11 year anniversay!  I know there are times where I take for granted what I have in our parents; it's something special and awesome when you have parents that want to spend time with your kids.  It's a breath of fresh air knowing you're not alone in loving your own kids with every ounce of your heart...we're blessed with our parents and as much as I do remember, there are many many times I don't remember to thank them for loving us and our gems.


We also kicked-off our 2012 fundraising this month...17 people joined us to brainstorm and help us figure out how in the world we're going to raise $28,000 this year - thanks a bunch to Kim for keeping us on track for it all.  In conjunction with that meeting, we launched our personal website where you can keep up to date with our efforts to raise money for a cure and our first CF Madness raffle to take place in March.

December marked a great month of celebration of the birth of Jesus, family gatherings and bonding with the kids and a surprise visit from Uncle Stevie.   Quality vs. quantity.  Even though you may not get the opportunity to see the people you love as much as you do, I've learned it's more important to make the moments you have count.  Taking the time to smile and really show someone you care means more than countless hours spent near each other.   That's one of the many things I admire about Jim, he ALWAYS says what he means, honestly and takes every opportunity to make a connection with someone.  It's not always easy to feel comfortable in every situation but it's the people in this world that count right?  Our pastor recently said you won't see a U-Haul following your hearse.  So true, so true...

Whenever I ask Jim how it's going, he says Fantastic, I'm living the dream baby.   I think he's right - sometimes I feel like I'm in a dream that is scary but we're blessed with an amazing amount of goodness our lives and I couldn't think of anywhere I'd rather be than right where I am.  In 2012, I thought about making resolutions, promises, another to do list.  I think I'll just make memories.  Wishing you all a year full of fantastic moments and blessed and healthy days.   To a fantastic 2012...

Some favorite verses from the year...
  • Cast all your anxiety on him because he cares for you. [1 Peter 5:7]
  • Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. [Ephesians 4:29]
  • And do not forget to do good and to share with others, for with such sacrifices God is pleased.  [Hebrews 13:16]
  • I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength. [Philippians 4:11-13]
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Monday, November 28, 2011

I may have Doritos on my face, but no PA in my lungs!


Pseudomonas aeruginosa

Back in October, we found out Dean had cultured Pseudomonas aeruginosa, a common bacteria found in water, soil, etc. Normally the bacteria doesn't bother anyone but for Dean with CF, his lungs form an ideal breeding ground for this bacteria that likes to grow in warm, moist environments.  This is dangerous because repeated lung infections from PA are the leading cause of decreasing lung function in people with CF. Most oral antibiotics cannot attack the bacteria so Dean's treatment consisted of 28 days of an inhaled antibiotic, Tobramycin (called TOBI) 2x a day.  The inhaled TOBI is concentrated in the airways and targets the area infected with the bacteria.  It made Dean tack on an additional 20 min inhaled/nebulized anitibiotic after his morning routine and then again in the evening.  I thought getting a 19 month old to sit somewhat still for 30 minutes was hard (his normal daily treatment time); 50 minutes seemed excruciating.  I stressed over it all...sometimes we only lasted 17 min, other times the full 20...once only 13 minutes (ugh)!  I felt sure that the few minutes we missed were going to cause us to not get rid of the bacteria.  I stressed about him having his binky in during the treatments but it's really the only way we can get him to stay there without flailing all around. 

This was our first experience with PA.  It broke my heart when I heard.  I had previously read that about 40% of CFers between 6 and 10 have had PA infections in their lungs.  How in the world could our 1 year old get it?  Was that so bad that it will damage his lungs? Will the TOBI work?  Sometimes I forget that the data for the little ones just isn't there.  Newborn screening for CF is relatively new in many of the states (within the last 6 years for many of the 50 states) so the data just doesn't exist for effectiveness for some of the treatments that we will be faced with.  However, for the strain of PA that Dean had (non-mucoid), this treatment was proven to work in kids 6 and above.  We were told it could sometimes take a 2nd or 3rd round of TOBI (coupled with a separate oral antiobiotic) to combat this bacteria.


In typical Dean fashion, he adjusted quickly and went with the flow.  He had his moments but overall, did great.  He...amazes...us.  After the 28 day cycle, Dean had a throat swab and the culture came back psudeomonas free.   

We are in the clear.  No cough, cold, congestion.  I quickly learned to stop complaining about the normal 30 minutes of treatments that he has daily and I am believing that they too have to be working.  I constantly learn each step of the way, not only medically (learning new terms and what questions to ask, new precautions to take) but also have learned to be more content.  I can't predict and plan what is going to come up so I've learned to appreciate the little things (so cliche right) but it's true...

...the silly comments that the kids make, the crazy loudness that a Sunday conga line brings, the fascination and wonder about how in the world our ELF got into the fishtank, the smile that only one of your own can bring.  They live in the moment, I am so trying to get there but as a start I'm more content than ever, more thankful than ever, more blessed than ever.

No more PA video message from Dean!

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Tuesday, November 8, 2011

Boomer Esiason said my Chicken Salad is tremendous!

Abbot Laboratories sponsored a contest, the CF Chef Challenge, to launch a new online nutrition resource that allows those of us touched by cystic fibrosis to share recipes.  CFers need to maintain a high calorie, high fat, high protein diet because they burn more calories than normal because their body is working hard to deal with all of that sticky mucus.  So those low fat, low calorie recipes that many deal with daily just won't do! 


To launch the site, they held a CF Chef Challenge, where you submitted a recipe (and your CF story) and a winner was chosen in the Breakfast, Lunch, Dinner and Snack categories. 


The judges (Michael Symon from the Food Network, the legendary Boomer Esiason, Ali Christensen from America's Got Talent and a CFer herself, and Suzanne Michel a registered dietician) held a taste test and chose the winners.  I can't claim to be a cook, but my chicken salad did take first in the Lunch Category!


Here is a link to the main website Chef4CF


Click here to see the videos of the taste test and the recipe.


One of the prizes!
My very own Chef hat
signed by the Judges!
Chicken Salad


And the media props:



Tuesday, November 1, 2011

Halloween 2011

Happy Halloween from our bunch (a witch, WaLuigi, a pumpkin and a monkey).  Fun times with all the Halloween activities and way too much candy.  I'm having a hard time not swiping a Snickers everytime I pass the large purple bowl!

We're all on the mend over here, feeling a lot better, adjusting to the new treatments and looking forward to the launch of our 2012 Fundraising committee - our kick-off is Friday, November 4th at 6:30pm.  Contact us if you'd like to be a part of it.  We need all the help we can get!

Sunday, October 23, 2011

A crazy antibiotic October!

Last week was crazy for us!  After about 3 weeks of what I thought were allergies for Cal, we took her into see the peditrician.  She just didn't look right, overly tired, pale, not herself.  Doc diagnosed her with severe bronchitic/walking pnemonia!  Ugh, zpac (antibiotic #1).  Evie, along for the ride at the doc looked great but developed a little cough over the previous week so I had her checked too.  Bam, ear infection, amoxicillin (antibiotic #2).  hmm...this could get interesting...I was convinced we weren't going to have a tri-fecta since my docs appt was scheduled for later in the day.  One of us really had to be just affected by these allergies!  Yes, just allergies for me but the cloudiness in my head wasn't from allergies - it was from a collapsed eustacian tube.  Nice, zpac #2 (antibiotic #3). 

Fortunately we had a routine CF clinic visit for Dean (at the specialist) the day after us girls had our doc appts and all the scripts were filled.  He was on Bactrim two weeks back for a deep cough so in my mind I completely thought he was "covered" from any of these recent illnesses we brought into the house.  He looked great but actually woke with a cold that very morning.  Doc listened and deteremined it was just viral but wrote us a script in case the cough came back.  It did, 2 days later, so we filled zpac #3 (antiobiotic #4).  The pharmacists at CVS must think I'm reselling this stuff ! 

After Dean's 4th day on zpac, we (conveniently) had his 18month appt scheduled (at the peditrician).  Cold was still there and that nasty cough still lingering.  Doc told me he had an ear infection.  Wouldn't this be covered by the zpac that he was going to finish that evening?  So confused!  I thought antibiotics wiped you out and got rid of all the nasty little bugs?  Never ending learning process for me.  We got home, called the specialist to update them on the ear infection and find out if we needed to start Dean on another antibiotic.  Checking the preliminary cultures from our "well-visit" last week, we were told that Dean cultured pseudomonas aeruginosa or PA (a nasty little bacteria that lives in water and soil and to most of the population, wouldn't do too much harm).  Because the thick mucus that sticks in Dean's lungs forms a warm, moist environment, it's a great breeding ground for PA where it establishes permanent colonies causing significant damage to the airways and ultimately reduces his lung function.  PA can be resistant to most antibiotics so the normal treatment is a 28 day inhaled antibiotic called TOBI.

So, the feelings part of this blog...I was sad.  I know this is a bad one to have and we've been so great about keeping clean.  We wash our hands everytime we come into the house from anywhere.  Even Dean gets up on the stool, knows the routine and even says dry dry dry when he's done. We don't wear shoes in our house, we disinfect with our "green" cleaning products, we boil our nebulizer after every use, and on and on.  I said to our nurse, I just don't get it, how did he get it?  She said it's everywhere, water, soil, in the environment. Oh my...Can you picture an 18 month old boy in your head now?  What is he doing?  Digging the rocks out of the dirt?  Helping you pull tomatoes off the vine in your salsa garden?   Drinking out of a hose?  Splashing in a puddle?  Trying to turn on the jacuzzi in your tub?  How can I avoid this bacteria with my little boy?  Nearly impossible...  Undeniably frustrating... 

So, back to reality...after a few days of calls to figure out the details, namely the insurance bawking at the astronomical price of TOBI, we received the meds in the mail and added this to Dean's normal daily treatments.  With our new schedule in place, we're set to attack this bacteria!  For the next 28 days, Dean's treatment schedule will be:
  • Pulmozyme for 10 min (inhaled through a nebulizer to thin the mucus in his lungs)
  • Vest Therapy for 20 min (to move the mucus out of his airways)
  • Tobi for 30 min  (to attack the psedomonas bacteria) 2x a day 12 hours apart (once in the morning and then again just before bedtime).
Besides the lung treatments, his digestive treatments include:
  • 3 Creon 6 with snacks and meals (digestive enzymes)
  • 2 ml zantac 2x a day (to reduce the acid and aid in the absorption of food)
  • 2 ml CF vitamins (extra A, D, E and K)
I thought this was a list, as usual, God's always there to pull me up after I get a bit down.  I clicked on a link of another fellow CF mommy only to find her list for her little man more than 2x as long.  We're still blessed, always will be...my next to do...find an app to track all of this, my brain cells aren't what they used to be...

Friday, October 21, 2011

OJ, the Juice, turns 6!

Happy Birthday Owen.  Ever caring and completely conscious of doing the right thing, Owen has "grown up" this past year.  He's gone from his nickname of PS (personal space - as he doesn't like to let you have yours) to a sweet and caring and incredibly smart kindergartner.  Owen enjoys playing Wii, eating bacon and being tickled.  He's got one of the best giggles in the world, can do math in his head, dips his salami in mustard and gives the strongest hugs ever.  He loves to torment his little sister, wrestle with his little brother and follow his big sister everywhere.  He makes you smile with his smile and tears up only when a can of chicken falls on his toe or when you make him practice his sight words.  To many years of smiles and giggles buddy, we love you like crazy!
Owen James (6)


Wednesday, October 19, 2011

What is KALYDECO?

Today, Vertex applied to the FDA for a drug (Kalydeco) that targets the underlying cause of CF (rather than a drug to treat the symptoms).  Here is the full article.  Although, Dean doesn't have the G551D change that this drug targets, we're ecstatic for those that will benefit from this and patiently await the results as well as the drug that is in the pipeline that will treat the change (DF508) that he has.  Keep those prayers coming, they're working people!!!


http://www.cff.org/aboutCFFoundation/NewsEvents/Vertex-Submits-VX-770-Application-to-FDA.cfm

Sunday, October 9, 2011

2012 Fundraising already?

Hello!  We have a lofty fundraising goal this year so we're forming our team to start brainstorming ideas and we need help!  We'll kick-off on Nov. 4 so if you're interested in joining the planning team of Eat. Pray. Dean, please let us know.  Our main fundraiser will be the Great Strides Walk in May 2012 and our plan is to see if we can host another event/two with your help.  Enjoy the cool down and a pic from our apple and pumpkin picking day!


Saturday, September 17, 2011

Summer 2011


Our summer of fun...awesome...
some pics to show you the smiles...
5 college roommates; 13 offspring


our beautiful niece graduates
from my Alma Mater

2nd Annual Tea Party with Gigi

Evie turns 3

and shows the first harvest
from her Salsa garden to Papi

Owen achieves his
Yellow Belt
 in Taekwondo

and gets his first baseball
trophy as a Pirate
Hanging with the O's
 
Cali performed as a Mouse in the
Bear Went over the Mountain
 

turned 8, and got a room
makeover from Omma & Obba


Dean gets his first
knee scrape :(


reminds us that he LOVES
Trader Joe's Greek Yogurt,

  
and takes his first wave runner ride!

A weekend away with great friends in WI
Ages of the kids:  8,7,6,5,4,3,2,1



Tuesday, August 23, 2011

Dean's first few weeks of neb and Vest treatments

Everything was delivered in record-speed and we were up and running only 3.5 days after the doctor ordered the new treatments.  Saturday morning (August 6, 2011) marked our first neb treatment.  We had given neb treatments to our older kids before so had an idea of what to expect but it's been a while.  We decided it best to do first thing when Dean wakes up - give him a head start on the day, get everything done with first thing and start our routine off that way.

Pulmozyme takes a whole 5 minutes to go through the neb so we were fortunate that we only had to hold him tightly for a short amount of time as he wriggled in our arms.  First I tried holding him, but I didn't make the mask tight enough so he was easily able to pull it off.  He's 25 pounds too so he has a little punch to him as he writhes and wiggles all over.  Jim had to take over and secured his arms down as he held the mask to his beautiful face.  The five minutes went quick in retrospect, but seemed to take forever at the time.  Dean was confused, agitated and wanted nothing to do with all the new gadgets in his room.

Immediately following the Pulmozyme, we started the vest for 10 minutes (Doc ordered 20 but we were told we could ease into it for a few days).  Dean didn't like it for the first 2 minutes, but we had a tip from our Respiratory Therapist to save a new game/toy for this time so we had some stacking blocks that distracted him and kept him "busy" for the next 8 minutes.  Along with Evie who kept cheering him on and telling him what a good boy he was.  Dean was sitting on my lap during the 10 minutes and I was truly shocked at how strong the vibrations were against my chest, I could only imagine the feel on his little body.  He did make a few sounds during the treatments and his little voice vibrated as if he was talking into a fan.

That first weekend, Dean just coughed and coughed, spit up a little mucus and continued to cough all through the next week, which isn't typical of him and we were told not typical at all.  However after meeting with the doctor again on the 16th, he explained that the cough receptors are near the larger airways so as we're "moving this mucus" from the smaller airways to the larger airways so he can expel it, it's triggering some cough receptors.  Absence of the sign of any other symptoms of a cold, we left the office that day with no further meds (whew!) but instructions to wait 30 minutes after the pulmozyme to start the vest treatment (in order for the meds to work). 

Changing our routine so soon after getting established proved to be a setback and then the 18th proved another interesting day for us.  After finishing his treatments and setting him in his highchair to eat, Dean gobbled his oatmeal as he was starving from waiting to eat.  After finishing, and setting him down out of his chair, he couldn't walk straight or normally; he resorted to crawling, became irritated, clingy, grumpy and just not himself.  After a trip to the pediatrician and some back and forth emails with the specialist, it was concluded that he had neuropraxia but we all couldn't agree on whether it was from the vest or from a compromising position. Either way, he's now better and it was a one-time issue. 

The hard part now is finding out the timing of the treatments.  First thing in the morning works well but Dean is sometimes starving so it doesn't work and now with new school routines, we're in a constant state of change.  Each day gets subsequently better.  We learned he likes to sit on our laps, lay his head against our chest, keep in his binky and is fine as long as we don't put the mask string around his head.  Just keeping our Bubbles the Fist Neb Mask against his face is enough.  I think he just doesn't want us messing with his curls!

Cali, Owen and Evie are so attentive and helpful and want to hold him during the vest treatment.  They talk to him and tell him what a good "buddy" he is - I think it calms him to be near them.

We'll get it all figured out.  We're blessed enough to only have to figure this out once a day....for now.



Monday, August 8, 2011

Our CF Clinic Checkup (August 2011 - 16 months old)

Last week, we had our routine checkup.  Dean meets with his CF Specialist team every three months (barring any illnesses) to make sure that he's gaining weight and doing well.  I walked in with Dean knowing it was going to be a long day.  First we went for his yearly chest x-ray to determine if there was any mucus buildup.  After a registration/insurance snafu, we finally got to the radiation lab.  Dean cried but sat still for the four pictures as long as I stayed close.

Next we went for his routine appointment.  This is a team which includes about 10 people all dedicated to work with us to manage the CF.  Dean's weight and height and head circumference are measured (just as it is at a pediatrician visit) and his pulse ox level is taken (to measure the oxygen saturation of his blood). After routine questions, the doc then showed me Dean's x-ray from May 2010 compared to this one and expressed his concern over the mucus buildup in one of his lungs.  I was devasted.  Honestly, I walked in knowing we've attacked this CF thus far from a digestive point-of-view and he's looks so great, hasn't been sick/on antibiotics in over 3 months, is well above the 50%ile in head, weight and far above in height, and is developmentally where the other kids were at this age!  To me, all was good, I completely expected a "clean" bill of health.  I didn't forget that CF affects both the digestive and respiratory system, I just prayed that since we've triumphed over the digestive part, it was only right that the respiratory would be the same.  The doc explained that we needed to put Dean on Pulmozyme (an inhalation therapy drug) administered through a nebulizer daily which would break up the thick mucus in the airways allowing air to flow better and preventing bacteria build-up.  In older kids with CF, it has proven to reduce the number of lung infections and to improve lung function. The next part almost made me cry.  He said, as soon as he's ready for the Vest, we need to get him on that.   The Vest is just that, a life-jacket like vest that Dean wears that attaches to two hoses that are connected to a generator-like machine which thumps on Dean's lungs for a set amount of time at a set pressure and frequency. I took it as a sign that I failed in doing the manual thumpers.  I know it wasn't true, it's the natural progression of the disease but it's hard to take.  And, everything we've heard is that babies as early as 18 months go on the vest.  We didn't even think it was a possibility that we'd go on it, Dean's only 16 months!!  We've got this little man growing so his chest measured 21" (2 inches above the minimum for the Vest).  After that measurement, all the rest of the visit was a blur.  Instructions on how to get a nebulizer, how to clean it, how to get the Pulmozyme, how to store it, when to give it, the cost, process for ordering the Vest, when to use it, how the insurance deals with it, how to clean that, what type to order.  I was trying to absorb it all while trying not to cry.

More routine things went on but I'll save that for another post.  Finally, after leaving the appt 2.5 hours after arriving at the hospital, we still needed to have blood drawn for labwork.  12 ml lighter, and another 30 minutes later we were in the car and Dean was sleeping before we had driven a block. 

Our little man, so tough and awesome, continues to make us smile, now it's mom's turn to learn how to toughen up.  I feared life would change when the respiratory therapy had to start and I walked around in a daze for two days after the appt.- making and answering calls, filling out forms, figuring out how this is all going to work.  I think we're getting there though (and I know I think too much!).  It'll all be fine.  Jim's perspective is that we can't look at it as if we did anything wrong, just that we're blessed that we can get him started on this earlier than we thought- and we'll attack this mucus buildup just as we attacked his pancreatic issue.  Well said...

Tuesday, June 21, 2011

3.28 miles through a corn field, up steep muddy slopes, over obstacles that were slippery with mud-laden feet before us, with names like Satan's Steps and Deadman's Drop, we completed the 2011 Warrior Dash...together.  Here are a few of our favorite pictures.  We can't wait to do it again next year with any warrior who is up for the challenge! (Thanks Lori for the awesome pics)!
The Warrior Roast
Muddy Mayhem




Thursday, June 2, 2011

Team Eat. Pray. Dean Great Strides Pictures

As promised, here are the awesome pictures from Team Eat. Pray. Dean Great Strides 2011.  We had an amazing amount of pictures to sort through and tried to get at least one of everyone in there, however there were a handful of people that we didn't have pictures for.  We know you were there, appreciate you being there and hold a special place for all of you in our hearts.  If there is a specific image that you'd like, don't hesitate to let us know, we'll send it over.

Finally....we'd like to give you a total of the amount raised but we still have donations coming in!!!  The site is open until the end of June and as of today, we're at $20,622!  A tremendous amount of money raised by an amazing group of people.

Thank you once again to our generous family, friends and sponsors (we inadvertently left off two sponsors, so please also check out Cross Technology and the Solution 3 Graphics link below)! Please forward on our thanks and photos to all that helped raise money, donate, and supported us.

Click here to watch the 3 minute smilebox slideshow

With gratitude,
Jim, Erin, Cali, Owen, Evie & Dean

Great Strides Recap!

Mid may in Chicago...46 degrees and chilly with the rain holding off until we packed up the car...we celebrated with over 160 members of Team Eat. Pray. Dean!!

Words are failing us as we sit down to type this - Today was awesome, just simply amazing!  We are in complete awe with the amount of support we have received in so many different ways.  Everything that you did to make our fundraising efforts and this actual day is truly appreciated.  We were choked up with emotions today after the group picture and we wanted to thank you all out loud for being with us, so we'll make sure to polish up on our public speaking skills for next year :).  But we appreciate and noticed and recognized the biggest and littlest things you did... the enormous fundraising success online, in schools, at workplaces and via word of mouth, the bringing and setting up of tents, the breakfast goodies, the efficiency and help in getting our area set up, the coffee, creamer, sugar, the munchkins, the oranges, the in-kind donations, the coolers, the blankets, the water, the tables, the t-shirt sponsors, the printer that produced great t-shirts, a fantastic banner and a beautiful thank you sign, the t-shirt folding crew, the help with the kids while we prepared for this day, the $ to help defray our expenses, the guest book, help with the logo, the tissue holders, the grills (especially lugging them when we didn't get to use them), the rice krispies, emails from those out-of-town with words of encouragement and promises of prayers, the watermelon, the cookies, crackers, snack mix, cutting the bagels, the pink lemonade, the pop, our photographers, our clean-up crew, our kick-off prayer, the letters from sweet, sweet people whom we've never had the pleasure to meet wishing us well and praying for us and Dean, those of you who tried to make it but because of circumstances out of your control were there in spirit, the help in getting things back home, those who manned our tent while we walked in celebration, kept Dean warm during the celebration, who brought their kids out in the chilly weather (and had to bring out the winter gear to do that), who came from hours away just for this event, those mommas that have little ones in their belly, those that left loved ones at home that were not feeling well and every other little and big thing that you all did to make our day absolutely the best we could have EVER imagined for.  This was a perfect celebration of Dean's first year.

We are blessed.  Dean is blessed.  We thank God for giving us our little man, for his big brother and his two big sisters.  We thank you for the love, the prayers, the support and will keep each and everyone of you in our prayers and look forward to walking with you each year!

We'll send out one more final email next week with pictures and the total that we raised when we get the final amount!!

Jim, Erin, Cali, Owen, Evie & Dean-o