The Fair and food born illnesses.

For a long time I have debated whether or not to write a post like this--
 I know that my views on this topic are colored by the experiences that our family has been through.
Here's a bit of the back story --- http://www.marlerclark.com/case_news/view/lane-county-fair-e-coli-outbreak-oregon

Jerry and I went to the fair, Jessica was about 15months old, I was about 8 months pregnant with Shane-- It was hot out and I remember just wanting to walk and eat an elephant ear. Jessica was a preemie so we were super vigilant about her care when we were out in public. We always brought our own snacks, and wipes...a change of clothes... Jerry and I talked about how to keep Jessica safe while we were at the fair, she had only just begun to walk with skill and so we decided that we would keep her as much as possible in the stroller. We also agreed that~ as much as we like animals that we would avoid the animal barns.
Sadly, we found out that E coli can be transmitted via dust particulate --- apparently Jessica ingested the E coli-- an amount the size of a dime!  E coli has an incubation period (Incubation period: 10 hours - 9 days; usually 3-5 days) and so we didn't know she was sick immediately. 
But once she was sick is was brutal to watch. We managed to get in to see our Dr. and she suggested that we immediately go to the hospital.
Jessica ended up spending about a week here at our local hospital, and then we were shipped to Doernbechers in Portland.  I quit my job and roomed in with Jessica... While we were in PDX, I turned another year older. After several dialysis treatments and a month or so later we were discharged. We came home and were required to keep track of Jessica's blood pressure and food intake, we also had some  yucky medicine that we had to give her. (I accidentally sipped some of it... and it was bad... she had to take it at mealtimes... poor kid-- the Dr.'s wanted her to gain weight but the medication didn't help )
Anyway... It was a long road to recovery and -- honestly she isn't 100%.  She still takes high blood pressure medication, and one of her kidneys is bigger than the other-- The Dr.'s are watchful that when she is a teen -- her kidney's will grow at the same rate as her body.  We have her yearly appointment coming up at the end of the month-- neither Jessica nor I are looking forward to that appointment.

This week is our fair week... and many friends and family are going to the Fair.. -- and although I really enjoy seeing the sights, the sounds and the smells at the fair, I love to see the things that people with skills create, the crafts, food and sewing projects.
 I am not eager to spend money to go to a place -- where my family could get deathly sick.
I know that there is a very small possibility that Jessica could get E coli again-- and honestly that is enough for me  to not take that chance and put her at risk.

We did try and sue, to recover monetary compensation for our medical expenses -- We had a great lawyer, Bill Marler,  but here in Oregon a class action lawsuit requires two things, One, that you prove damages- and Second, that you prove liability. There were about 70 families represented, and although we could defiantly prove damages-- we could not prove to the judge that the Lane County Fair had done ..."anything" to cause our sickness.  It was heartbreaking to receive the news that although the Lane County Fair was the source of our outbreak-- we were unable to collect funds to compensate for our ordeal.

As I sit here typing this I hear on the news about another outbreak of salmonella -- in eggs and milk.

It truely makes me angry and sad-- that we are so technology evolved  and yet... food born illnesses can bring a nation wide recall of such basic items. 

I hate it, but I love it~

Because of my kids-- I have learned to be the resource mom.

I hate it -- but I love it...

When Jessica was born I had to learn all about being the mom of a preemie-- I had to learn about how to navigate the medical jargon, I had to learn just how precious the caring staff could be, I had to learn how to follow my Mom's instinct and -- sometimes I had to voice my opinion.

I remember I felt like I had been left off on a deserted island... like the people in LOST.

I kept wishin and hoping that I could have someone to call who had been there-- done that ...

The nurses, staff and the social workers helped--

 but none could really answer my difficult questions--

How long will this last?

Will she be normal?

How am I going to get used to this ..."feeling" ?

And

Why?

Then when we found out about the E coli,  the Dr's kept saying,

 "Well she's a case study of one--- We don't know for sure if her kidney's were ever normal-- and really we don't know if her normal is strong enough." 

So, when Shane was born and his behavior as an infant was not -- even in my experience "typical--"

I felt like I deserved a T-shirt... been there done that... I knew who to call -- or at least I knew what agencies to start by calling.

Other mom's that I met thru my circle of friends would often call me for help

-- I enjoy helping when I can, but this was very weird for me--

I was learning how to just be ...a mom-- and yet I was instead,  this person with information.

I finally decided that I could just go ahead... and give help when I could ~

I still get phone calls -- I need help -- who do I call and how do I ask for what I need.

This weekend the kids and I went down to the school to ..."play" tennis, while we were there Shane-- proceeded to tell another little boy...

 all about his "skateboard shoes, and how his wii is just the best thing EVER...."

I found myself talking to the mom and the next thing I know I am talking about the school and how it's great this year-- I go on and on... about how EEP (the pre-school) is just over there in that building; I talk about how you can call EC Cares and get your child tested -- all of this is a bit much-- now that I think  back I hope I didn't freak out that mom... I am not sure that I sounded like a "sweet" passionate mom...

I may of sounded like highly skilled Mom on a Mission to convert all to MY WAY OF THINKING!

So, I guess I ended up this weekend hating that I knew all this,

STUFF-- and yet Loving it that I knew where to get information--

• and still I am not done with my search for how best to not to pull my hair out~ 
• or how to navigate the web to find what I need quickly-- rather than sifting thru a ton of sites...
•  

So, anyway-- that was our weekend!

Happy Monday...

prayers for HennHouse,Travis and family,Sally Jo in China, and Haiti

Speaking to children with Grace

I love my kids...
But there are times when I want to pull my hair and scream, I have however realized that hair pulling and screams will not solve the problem.
Because Jessica was a preemie we received Early Intervention Services, and along with that we were able to take parenting classes-- some were free and there were even a few that we paid to take more than once, since we enjoyed the class so much! (there was excellent childcare on site and Awesome snacks!-- yahoo,,,)
anyway... Both my husband and I wanted to do better than we had seen growing up , and so we both made a choice to do our best, and if that wasn't working...then we decided to be willing to try something else.
(That can be tough... you know the quick answer is a swat on the hand...but often the best answer is a re-direct and then a social story or a lesson, about good choices, bad choices)
We have learned that how we talk to our kids matters, and the tone of voice, whether we are on their level or above them matters... we have also learned that the volume, and cadence of our speech matters-- another key thing for us, is the amount of words used-- LESS is MORE~
All that being said, please choose carefully the words you say--- if you don't want them to scream in the shower, while at the pool, then tell them what they can do... "you can drink the water...(ewwww) but you can not scream, while in the shower..."(maybe that was a bad example..but you get the point...)
I overheard myself talking to Jessica -- and I had to stop and ask for an apology-- My words and tone were negatively affecting what I wanted to say. The topic was simply brushing her teeth, and then need to do better-- but my words were so harsh that the teaching moment was lost.--

Thankfully, children are resilient and

I don't believe permanent hard was done...

but I wonder how many parent's do stop to think -

-- about how the words I say have power,

how can I say this well and with GRACE?

on another quick note, Shane finished his testing with the psychologist... and he was VERY impressed with Shane, so many of the skills that Shane has are above the benchmark for his age, and only a few of his skills are somewhat lacking... I am very hopeful for next year, a new teacher, a new principal, a new plan... and a POSITIVE future!

~~~~~~~~~~~~~~~~~~

I got Shane's stuff from the school without seeing the teacher -- yay!

and here is a story he wrote...

Jamie Foxx the elephant went bowling and kept getting a strike on the pins. He actually won money for doing it and then he wondered "What should I do with all that money?"When he went to sleep that night he was dreaming that he had a motorcycle and that he was human so when he woke up he went and bought a motorcycle but it wasn't so easy to ride it for an elephant and that is the end of the story--

that is all I've got...

So, NEVER LET AN ELEPHANT RIDE A MOTORCYCLE!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

first draft of my speech...

This is the first draft of a speech

that I am due to give on Monday night--

- what do you think?

Children’s Miracle Network,
Mr. Wolverine~ Willamette High School
March 16th 2009
Hello, I’m Stacey and this is my daughter Jessica~
Jessica is a 2nd grader at Howard. I also have a son Shane, who is a kinder also at Howard. Their father, my husband, Jerry is at work this evening supervising the making of oatmeal.
I am here tonight to make you cry… and to talk about how CMN has been apart of our lives.
It was a Thursday, when I went to my regular check-up appointment with my OB/GYN -- I was 32 weeks along, the Dr. talked with me about how I was feeling, and if I was craving anything weird-- she asked if I was eating healthy. Then my NOT so favorite part, the blood pressure check, the blood draw-- and also the urine sample. Ewwwww….!
Apparently, I didn’t pass these tests with flying colors- next I had to spend some time on my side in a recliner being calm and still while their was a monitor keeping a close eye on Jessica.
When I finally got back to the exam room I knew something was up when I saw a wheelchair just outside the door.
The Doctor came back to the room with the nurse and explained that I would be immediately admitted to Sacred Heart-- I think the nurse was there just in case I tried to leave!
I remember I had my husbands’ phone and pager with me, I was supposed to get new batteries, I also had to stop my work, and run other essential errands. I did not realize how sick my body was, I was just frustrated that I was being told what to do and that I didn’t have a choice in the matter. There were so many things that needed to get done and yet I was being told to lay down and be calm and still--- what a challenge that was!

I spent a LONG week in the hospital trying to stay in bed and keep my blood pressure down-- I was on the phone, asking friends to bring me PJ’s, fun healthy food, and things to do-- I even spent some time coloring a coloring book!
Can you say Boring?
The nurses would take my blood, they monitored my urine, they took my blood pressure-- they even gave me shots in my hip-- that really HURT-- to help Jessica’s lungs get stronger. I decided to not let my frustration show-- I often responded to requests for bodily fluids and other tests with “goody goody gumdrops”
~( I am a firm believer in the phrase, never let them see you sweat!)
It was Saturday morning when the Dr came to say, that I was going to give birth, and that I should make the phone calls quick -- but that today was the day my daughter was to be born.
Jessica was born early-- at 33 1/3 weeks old she was only 3 pounds 4 ounces, and she was 17inches long. Her birthday, was the Saturday before our first Mother’s Day. I had toxemia -- which means that my blood pressure was increasing the longer Jessica was in my body. By inducing labor, the Doctors were hoping that I would get back to normal blood pressures-- and that Jessica would be healthy enough outside of me. Jessica was born after a 3 minute long emergency C-section.
There were some complications after Jessica was born, for both of us--she had to be resuscitated, and she also received a blood transfusion soon after she was born. I was under so many medications, the first time I got to see Jessica in person, she was already 2 days old. Jessica smiled first for the NICU nurses, her first bath, was given by a NICU nurse. For about a week Jessica was only known as Baby Girl Harris, I was too foggy from all the drugs to make any life long decisions.
Jessica must have been about 3 or 4 days old, my husband stopped by to visit, and refused to leave my room, until we had given our daughter a name. There was talk among the nursing staff that Jessica would have to be transferred to Dornbechers in Portland.-- After much prompting by my husband -- we decided that we would name our daughter Jessica, later we realized that there were 3 different Jessica’s who helped us at the very beginning of her young life-- The Doctor, my nurse and one of the nurses in the NICU -- were all named Jessica.
The rumors we had heard were true and we found out that I was being released, but that Jessica would be taken via NICU ambulance to Dornbechers’… There was concern that Jessica might have to have kidney dialysis-- .We knew then that this was serious and that it wasn’t going to be an easy ride. On the way to Portland, we stopped to eat at a KFC, I was craving mashed potatoes-- as I sat down to eat I started crying~ the restaurant was full of construction workers and you could tell that they all wanted to know what my husband had said to make me cry… It wasn’t what he had said, it was the song that I had heard --”I’m already there” by Lone star --
I couldn’t help but think that we were missing out on yet another of Jessica’s firsts’ ~ her first trip to Portland. I happen to have family that live in Milwaukie --they were so helpful they let us stay in their house-- although most of our time was spent at the hospital just praying and hoping that she would not have to go thru dialysis. When the Doctors came by one evening they told us that they had ordered the extra small catheter -- from a Seattle hospital and if Jessica’s numbers didn’t get better they would have to give my baby dialysis at less than a month old! There were many people who we had never met that were praying for all of us, God happened to be listening and Jessica ended up not having to go thru dialysis.
So, after about a week in Portland, we were sent back to Sacred Heart here in Eugene. The doctors told us, that we just needed Jessica to grow, gain weight and learn how to eat, regulate her body temperature and to breathe while sleeping.
We spent a month or so in limbo-- I would go every morning to visit and attempt to feed Jessica, I would rock her in a chair, while repeating suck, swallow, breathe.
(As funny as that sounds now, it was crucial for Jessica to develop these skills.)
While rocking Jessica, I was always trying to stay focused on good, when I saw a plaque on one of the incubators that said donated by CMN-- I asked what was CMN. Shortly -- after that a social worker came and talked with me -- she asked if I would be willing to go down stairs and talk on TV for the telethon. I think back now and I don’t understand why I said yes, but I did-- and just a few weeks after giving birth, I found myself on television with a picture of my daughter trying not to cry.
After a few ups and downs Jessica was gaining weight, ounce by ounce ~ the rule then was 5 pounds and or by the babies’ original due date. Jessica’s due date was June 23rd… Sadly, the day we brought Jessica home from the hospital was the same day that we had a memorial service for my Grandfather-- he had Alzheimer’s and so he knew that she was born, but he wasn’t able to ever hold her.
If our story ended here, that would still be a good story--don’t you think?
But -- our story continues~
What were you doing the summer of 2002 -- do you remember?
In August I was 8 months pregnant with my son, Shane and I was craving an Elephant Ear-- I had to beg and convince my husband to go to the fair. He was concerned, that since Jessica was only 15 months old and had only just gotten good at walking ~ the fair would be scary. I reassured him, we will be extra cautious-- I will bring extra clothes and wipes-- just in case. And we were careful~ but I am here to share with you this-- You can wash your hands, you can be careful-- and you still can potentially get E coli. It only takes a small amount -- for Jessica it only took just the size of a dime.
We found out later that you can ingest the E coli --just like you do with dust. It wasn’t the day we went to the fair that Jessica started to show sickness-- it was a few days later. She was puking and had diarrhea -- she didn’t want to smile or even to complain. We had to go to a funeral for a family member, Jessica just seemed to get worse, I called and got in as the last appointment of the day. As the doctor was looking Jessica over and asking me questions -- it was like she knew the answers already. The Dr went and got a colleague to confirm what she thought she was seeing, they both stepped into the room and then Jessica projectile puked all over the room-- the Dr’s just looked at each other and nodded. Our Dr came back in to the room and explained that she wasn’t able to confirm-- but that she believed that Jessica had E coli. apparently we were not the first case of that day. The Dr asked me if I thought I could take her home and take care of her-- or would I rather admit Jessica to Sacred Heart. I was so scared at that moment, I remember taking a moment to ask God for guidance and then saying, yes let’s admit her. I called my husband and asked that he come with me to the hospital-- I figured that I would not be a safe driver with my tears and Jessica so sick in the car. When we walked in to the hospital it was like we were on a red carpet just for us-- but this wasn’t a red carpet I wanted to be on. We walked through the double door of the pediatric intensive care unit, and I was surprised to see familiar faces.-- I recognized nurses from our last stay at Sacred Heart-- I also saw a customer from my work-- that’s when I started to realize that we weren’t the only one and that this could be really huge. We stayed in Sacred Heart for about a week and then -- the Dr’s came to tell me that we needed to go to Portland again. I was upset and unwilling to admit that Jessica was that sick, so I threw a hissy fit… and asked to talk with my regular pediatrician-- the staff got my Dr on the phone and I remember her words to me, “Just go to Portland and keep me posted.”
Because I was pregnant with my son and the staff knew about how Jessica had come early-- they were somewhat reluctant to have me in the ambulance all the way to PDX~ I convinced them that I would be “good” and not get upset and stress Jessica. I don’t remember much of that trip, I do remember how happy I was to be out of the ambulance and able to move. The nurses realized I was very pregnant and immediately they made me lie down with my feet up.--- The nurse was rather stern with me-- explaining that she only wanted ONE patient -- I was to be calm and not go into labor anytime soon. At the Dornbechers rooms, they have a little window bed, and so Jessica and I moved in. We were in PDX for about a month, I spent my 32nd birthday at my daughters’ bedside, I learned things about E coli and dialysis that I would rather not know. I learned about the tests that they took and which numbers should be higher and which numbers should be smaller. I learned that sometimes the simple act of a stranger praying for you can feel like magic. Sharing our story isn’t easy, but I do it to give back-- Please, know that what you do as a community has value and substance. Know that when you give your time or money-- you help more than just the kids, you help families-- and you help to make this world just a little more friendly.
Thank you for listening and crying with me!

Get the kleenex-- a post about the past~

Each year at this time of year, there are a few local events that make my heart ache--

• The Lane County Fair(This year the same weekend as our camping trip)
  
• The Harris Family Reunion
• The Moore Family Reunion and camping trip(next weekend we are off to Reedsport)
  

Our family just got finished with the Harris Family Reunion, and although it was so nice to see everyone~ there was some moments that just made the world stop turning for a while.
{Quite a few of the family asked about Jessica's health and her future-- Although were apart of the lawsuit against the Fair --- we received ZERO monies,Zero apologies, and Jessica currently has to take blood pressure medication every day to keep her kidneys working at a normal rate.}
Back in August of 2002, I was about 8 months pregnant with Shane--
I wanted to walk around ~ I was just... a little hot and cranky~
the Lane County Fair was going on, after much complaining and cajoling
I convinced my dear hubby to take us (Jessica,Jerry and I) to the fair--
Since Jessica had already been though enough medical stuff
-(being a premiee,born at 33 1/3 weeks at only 3 pounds 4 ounces)
- we planned ahead not to touch any animals and to only eat from vendors that we had seen in years past. We also thought that by keeping her in the stroller we would be keeping her safe -- she had only just figured out how to walk and we were afraid that she might get squished in the crowds of people. When we ate, we went in the bathroom and washed our hands and then came back and baby wiped them-- thinking that we were being clean and safe.We saw the tables and chairs that were set out and decided that sitting in a grassy area was a better plan.

We found out later that our choices-- may or may not of been helpful at all.
Herein, lies guilt~

About a week after the Fair, we were at a funeral for my husbands cousin- who passed away after a battle with cancer-- she left 2 kids and a husband behind-- I can't remember her age- but it was just too soon for this event to happen, too soon. While we were trying to share our loss with the Harris Family, Jessica's lack of spirit and energy was fading fast. She had not had anything to eat, and wasn't really even interested in drinking juice.We had made an appointment to see our pediatrician at 4pmish-- I left Jerry with his family and I took Jessica to see our pediatrician.
Our visit seemed to be the longest ever-- Our Dr. looked Jessica over and asked questions-- where had we been recently, what had we been doing--
I didn't know where all the questions were leading -- just that I didn't like the look on our Dr's face. Our Dr. wanted to give Jessica some Pedalite to see if she could keep that down-- the next thing I know she was projectile puking-- (pardon the description) Our Dr. went and got another pediatrician for a consult -- the look on his face wasn't helpful-- his eyes never really met mine-- and I don't think he even said a word out loud-- he just looked at our Dr. and nodded. Once again our Dr. left the room-- I was in-limbo, my daughter had such a cloud of sickness of her and I was just embarrassed about her puking in the office~ shock and dismay seemed to be the only feelings I can remember.
I don't know how much time had passed -- but I know that the office got very quiet and it seemed as though I was the only patient left.
Our Dr. came in and explained that she thought, along with the other Dr. that Jessica was part of a group of kids that were VERY sick-- she was very sad to say that she thought the sickness was,
E coli. -- She asked if I wanted to go home with Jessica and see if I could nurse her back to health--- She explained that I would have to watch Jessica very closely -- I stopped to ask, just how bad can this get? I don't remember the words that she said, just that the end result could be death. I told her that I was very nervous-- How could I take Jessica home and help her~ if she couldn't even keep the Pedalite down? Our Dr. then said, well Jessica is very dehydrated-- let's go ahead and admit her to the hospital and see if they can help her-- .
She left to make the necessary calls and I called Jerry--- who was still with his family-- Through my tears, I explained that I needed him NOW to come and drive Jessica and I to the hospital. (There was no way I was going to be a safe driver with my daughter sick in the back seat.)
When we got to the hospital, we were fast-tracked to the PICU-- On our way in the double doors,
I saw another Mom that I knew, (she was a customer of mine while I worked at Dari Mart)
the tears welled up in my eyes and I just reached out for a hug-- I asked why are you here, and she said, my son Hunter is sick-- we think he got sick with E coli.

As, I type this -- my face is blotchy and red, I think I have emptied all my tear ducks--- So, I am going to pause --

I hope that by reading this,
people will be aware that E Coli is a terrible thing
-- and that hand washing is VERY important--
but that there are MANY other things that can help...to prevent E coli.

• keep the animals and the food vendors separate
• test the animals prior to the fair (Yes, most cud-chewing animals have E coli present, but this test is for E coli serotype O157:H7 which is what affects humans)
• Have the animals a week or two after the Fair-- not at the same time
  
• Know that E coli can be airborne
• Know that even if you are very cautious, the amount of E coli needed to get sick is very small-- our Dr's said that Jessica might of only ingested the amount the size of a dime.
• E coli affects the very old and very young-- mainly the fragile.

Please, as we enjoy the Summer-- be cautious of Fairs.

Preemies & The Things I Want Most

Below is some information that I found,about preemies, Jessica was born at 33 1/3 weeks, and only 3 pounds 4 ounces... so a good portion of these things apply to her.
Jessica has an overwhelming desire to absorb facts, so her vocabulary is AWESOME!

• 
  Learning Problems
  How common are learning problems in former preemies?Learning deficits or learning disabilities at school age occur in about 10% of children born at term. They are more common in former preemies; the smaller and sicker the preemie, the greater the risk. Up to 45% of infants weighing <3 1/4 lbs. at birth have one or more abnormalities on testing at school age. It is usually not possible to predict at the time of discharge or during early development who might develop these problems. Sequential evaluation over time is the best predictor. Knowing what problems might develop can make you alert to signs of difficulty. Early diagnosis enables early evaluation and intervention. On the other hand, being overly concerned and always questioning your child's development may be detrimental in itself. Problems which are normal at a younger age may be abnormal at a later time. If you have a question about your child's development or performance, talk to your child's doctor or teacher or have your child tested.
  What are the most common learning problems at school age?
• Eye-Hand Coordination Problems
• difficulty with copying pictures or words, especially if there are many objects in the picture
• difficulty with puzzles
• difficulty learning handwriting Language Problems
• difficulty following directions, especially if there is more than one step
• difficulty putting things in a logical order
• poor vocabulary for age
• difficulty learning to read
• not understanding the meaning of sentences
• inability to tell one sound from another
• avoiding classroom participation
• difficulty remembering words
• Thinking Problems
• poor memory
• difficulty memorizing words, tables;
• forgetting assignments
• difficulty with spacial relationships such as size, distance
• problems with sounds and their symbols
• difficulty with abstract thinking
• difficulty making decisions or making poor decisions
• poor common sense
• slow to grasp new concepts
• ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I also wanted to mention a REALLY great book I just finished reading,

The Things I want Most by Richard F. Miniter

It's a true story about a family who decided/were lead to become foster parents and the young man who came into their lives and hearts, it is very moving and well written. It will have you crying,and laughing, and thinking about how can I BE the Best parent!

It is in a word,(or two...) courageous and lovely!