Look Through Our Eyes...

10. Double Digits. 2 Whole Hands.

2010-11-12T03:58:00.000-08:00

Last Sunday, Charlie turned 10.

Double Digits.

2 Whole Hands.

As in, closer to teenager then toddler.

6 years until he drives.

8 years until college.

Excuse me while I go cry.

For 10, he's both exceptionally mature and exceptionally immature at the same time.

His knowledge base is so far beyond so many other kids, and yet, he's somewhat sheltered from pop culture, and thus, not really "growing up fast" in the society kind of way.

I look back at what he's been through in 10 years and I realize he went through more in his first 10 years than I did in my first 25.

He's seen more, been more places, done more, and yet he's not cynical, or hardened.

He's sweet.

And kind.

He's lost 3 good friends, given a eulogy, received a life altering chronic illness diagnosis, done infusions for 7 years, put in his own needles. He's been to 27 states, spoken in front of 1000+ people, gone to New York City for a book signing.

When I look at my young man I know he has been shaped into exactly who he is supposed to be by these experiences, and his strength outweighs mine by light years.

Happy Birthday Doodle Bug.

The Need To Blog

2010-11-07T04:48:00.000-08:00

I'm a busy person. Our life is VERY busy. There are days when I barely have time to think, and yet...

I miss blogging.

I miss documenting our life. I miss the connection with friends. I've resisted the urge to get back to blogging. I've used twitter, I've used Facebook.

I miss blogging.

We've moved half way across the country. We're experiencing a whole new life, new weather, seasons, a new city. It's not at all like California. Grandma and Grandpa are not a 4 hour drive away, they are a four hour flight. We Skype instead of sitting on the couch. Keeping them updated has become Facebook updates and mobile pictures, but very few real insights to how they are growing. Charlie's 10 now, and Kate 8. Little baby Tommy, is 6.

I miss blogging.

We've made so many changes in our lives, events that will shape us forever have helped us simplify, it's easy to take a step back and remember what's really important.

I miss blogging.

I thought about doing a new blog. My history, our history, it's here. This is where we have shared good news, and struggles. When Tommy was briefly kidnapped, I shut down completely, nothing felt more important than circling the wagons, and protecting his and our privacy.

I miss blogging. Badly.

So today, I take the first step back to blogging.

2010-04-23T09:38:00.000-07:00

C.J., YOU WILL FOREVER BE MISSED...

Written in Loving Memory of

Christopher John “C.J.”Twomey

on behalf of Hallie, John and Connor Twomey

by Dayna and Kimmy.

Words are at times, inadequate, and often hard to come by. This is the hardest thing we have ever had to write. It is with deep sadness that we tell you that on April 15^th, Christopher John “C.J.”Twomey, the beloved son of Hallie and John, big brother to Connor, passed away unexpectedly, leaving behind his heart-broken family and friends.

Please take a moment to read C.J.'s obituary. In the middle of all their saddness, Hallie and John were able to find the strength to write a beautiful and loving tribute to their amazing son.

Those who loved C.J. are left to miss his infectious smile, to wish to hold him again, to have him saunter into a room and make us all laugh. We wish we could talk to him, to watch him love the way that he did, with his whole heart. In short, those who loved C.J. are longing for the future we were all supposed to have with him. Hallie and John are heart-broken, are struggling to understand the events of the past week and are focusing on making sure their son Connor, who has shown grace and maturity well beyond his 16 years, knows and feels the love of his parents at this very difficult time.

Hallie, John and Connor have received an overwhelming amount of support over the last week from friends nearby who have stood with them through horrific circumstances, to the calls of support and the messages sent through text, email, Facebook and many other mediums. They know that so many of you are hurting as well.

Even in the mist of incomprehensible pain, Hallie and John continue to think of others. Despite their own pain, they remembered the pain of Hallie’s dad as he was waiting for a heart and became a recipient himself. In C.J.'s final hours, Hallie and Johnmade the heroic decision to donatehis organs. This week, 56 families felt the joy of hope for their family, even in the darkest moments forC.J.’s family.

Many have asked what they can do for the family and we have thought of a few suggestions:

Pray for comfort. Hallie, John, Connor and their extended family have pain that is indescribable; please offer up prayers that comfort can come to them.

2. Continue to send messages of support. The messages of support they have received mean more than they can express right now.Messages sent through Facebook, her Blog, or for those who have the ability, text messages of support are appreciated. While they are not able to respond, they are reading them, and it does lift them in support when one more step or one more breath seems like it’s just too much to take.

3. Make a donation. Kimmy and I have set up a fund called the "Twomey Family Benefit” for the family to use as they see fit – for funeral expenses, for a memorial for C.J. or maybe even to just be able to get away as a family and spend time grieving the loss of their beloved son. Many of us felt the need to do SOMETHING, and being far away, and knowing that we can't take away the emotional burden, this felt like something we could do to help.

If you are inclined to make a donation, you can simply walk it into any TD Bank and ask to make a donation to the "Twomey Family Benefit" (these exact words must be used). If, however, you do not have a TD Bank near you (as they are only located on the East Coast) you can simply mail a check to:

TD Bank

200 US Route 1

Falmouth, ME

04105

The checks should be made payable to the: “Twomey Family Benefit” and should also include those exact words in the memo line of the check.

Any questions can be directed to Kimmy at: kimmy@maine.rr.com

We know that this time, for all of us, is shocking and difficult to comprehend a life cut so short. We hope and pray that you can take a moment to hold those you love tight, tell them you love them and cherish every moment.

Love like C.J. did, with his whole heart, and give to others freely.

May we all find comfort...

Dayna & Kimmy

The Amazing Trip in Pictures, continued...

2009-03-15T20:09:00.000-07:00

One of my absolute favorite pictures from the entire trip. I always wanted my kids to be close, this picture is what I have worked for as a parent.

I love that 15 minutes in a superhero's suit is all you need to feel invincable.

The Princess and her boys.

Jimmy Buffet's Margaritaville. We LOVE this place (if you ever get there, have the Nacho's - trust me).

A horse is a horse, wooden or not.

I love that we were in the amusement park capital of the world, and the kids just wanted to play stuffed animals.

3 years ago when we were at Universal, Tommy fell asleep in Curious George's lap, it seemed like maybe that memory was imprinted in his brain, because he could not let go of him once we got there.

This smile...it says it all.

Make A Wish - Walt Disney World Edition

2009-03-13T05:31:00.000-07:00

Here are a few pictures of our Make A Wish Trip. I have so many amazing, magical things to show you, and tell you, but I wanted to at least pop a couple pictures on here, because it's taken so long. I've been in Wisconsin and Minnesota this last week, visiting some BioLife Plasma Centers to say Thank you for the plasma that makes our medicine:
watch a video here if you want to see a news story

Here is the best part, Kate's Make A Wish, in a few pictures!

Those limo rides can be hard on a girl (in her defense we had to leave at 5:30 am, which means we woke at 4am).

The kids rode this merry go round every single day, it's at the village Give Kids The World and it's an amazing place (a whole blog post to come on this amazing village).

A new playground at the village captured the kids imaginations, and literally they would have been content to just play at Matthew's Boundless Playground all day, every day. It's Candy Land themed, who could want more?

Epcot, the first park we visited.
Checking out Mexico inside Epcot.

Day 2 - The Magic Kingdom - on the boat headed over. This day needs it's own post because of a very magical experience, so look for that to follow. But this picture? This picture warms my heart, the smile on her face says it all. She so loves him!

What an amazing character experience, can you see that smile on her face?

The boys favorite of all the characters :)

This is by far one of my favorite pictures, my expecations are low, if everyone is looking at the camera, it's a good picture. Besides that crown on her head... every little girl should feel that special!

We sometimes call Tommy Stitch, so this picture cracks me up, they all find him so funny, that he just makes us all smile.

Wishes Come True

2009-02-21T09:37:00.000-08:00

There was a time, not too many years ago when I felt terribly alone. In less than an 18 month period all three of my kids were diagnosed as missing part of their immune system and then started their IVIG infusions.

I felt isolated, and lonely and I wondered why no one understood. I hurt in ways I can't even explain. I worried about my children's futures, I worried about what they would be able to accomplish, would they go the places they wanted to without worry? Would they travel on planes and explore the world as they pleased or would they spend most of their lives tied to a hospital?

When I thought about what I wanted for my children, I wished that my children would never have to feel as alone as I felt when they were first diagnosed and sick, I wished that we could live with so much less worry, that we could be like anyone else. I wished that we could get explore without needing to sanitize what we touched first.

When our oldest son Charlie had his Make A Wish Trip when he was 5, Kate was 3, and Tommy was almost 2, I remember being so scared, wondering who we would use if the kids got sick? How could we possibly get on a plane with immune deficient children and be that far from their doctors? I remember how AMAZED I was that they went on what amounts to a flying germ factory, and somehow managed to not end up in a hospital, to not get sick. For us, that trip represented a first step back to really living.

The first time I was ever asked to speak to the employees at Baxter Health Care, in the actual plant where their medicine is made, I spoke about this. I told the story of being alone, and afraid. I told them about the time before Tommy was born and Charlie and Kate were in the hospital at the same time. I told them about the desperation I felt. How I knew something was wrong, but I didn't know what it was. I told them about the doctor who told me I was over reacting, and that there was nothing wrong with my daughter, that she was too fat to be sick, that fat babies were not sick babies. I told them about the hope that I had gained as my children started on their Gammagard, the medicine the employees made. I talked about the excitement that we had when our children flew across country, went to Disney World, and didn't get sick. I thanked them, and I told them that WHAT THEY DO MATTERS. That their jobs were more then just a job, that they truly changed our lives.

Over the last 3 years, we've continued to go to the plant with the kids, to keep reminding them that they matter, their jobs matter, that we appreciate them every day. Every time we do something we couldn't do with out them, and the medicine they make we are grateful. We've built relationships with the employees at Baxter and over time with the people who collect their plasma, and even some of the people who donate the plasma to make their medicine.

We try, as much as possible to help our kids see that they are not alone in this fight. We want them to know that they have this enormous support system standing behind them, cheering them on, making sacrifices and working at a difficult job so they can be like any other kid in every way possible. It's one of our goal for the kids, that they never feel the isolation that I felt in that first year.

Yesterday, the employees at Baxter amazed and humbled our family. You see, we always try to make sure our kids know that they are not alone, we spend time going to the plant, we talk about the people, we do as much as we can. Yesterday, the people at Baxter showed us in a way I could have never imagined that not only are we not alone, but that they really are cheering the kids on.

You see, Kate is having her Make A Wish Trip, she also chose to go to Disney World, and we leave next week. She really wanted to share that with her friends at Baxter, so she wrote them a letter to tell them that she is going, and is going to send postcards. We planned to go to the plant to drop off the letter. Instead of her just dropping of the letter, Baxter planned a send off party for her.

They had cake and sparkling cider, and they gathered in a room and brought princesses and had her bring her friends, and most of all, they laughed with us, and talked with us, and they spent time showing our kids how much they care. They humbled us. The people who make our medicine, the people who already give SO much to us, spent their very precious time being excited for us, and loving us. It was more then this mother could have ever asked for.

It's a phenomenal feeling to be in a moment that you realize your family will remember for the rest of their lives. A moment that will become a part of who you are as a person, a moment that changes you, that helps you feel less alone, moments that in the end define part of who you are.

It's an amazing thing to watch your daughter paint on the face of a man who makes her medicine...

to see your son sitting and having cake with the people who make it possible for him to go to school...

It's an incredible thing to watch a little girl sit with your daughter, to know that they go school together, do girl scouts together, and know that her Daddy makes it possible for your daughter to do those things.

How can it be anything less then marvelous to watch your husband talk about his children and the lives they live with the people who make it possible for them to live those lives.

There are not enough words to describe the way my heart feels, how wonderful that moment was when Kate said to me, "You know the best part about today Mommy? It wasn't the princesses, or the cake, it was that we got to do it our friends who make our medicine. "

In a few days time we'll get on a plane and head to Disney World and Kate's wish will come true. As we head to the plane, I'm not worried anymore, over the past 3 years as we've begun to trust that we really can live again, and that we can explore, we're getting on a plane knowing our support system is standing behind us, and my wishes have already come true.

Grandparents Day Tea

2009-02-04T10:16:00.000-08:00

Each year, the first graders host a Grandparents Day Tea. They spend months learning about family, and long ago vs now, and how it all fits together. Last year, Charlie was a host in his classroom, and this year, Kate was a hostess in hers. My parents came down from the coast where they live to be a part of the special day. As an added bonus, that morning, Charlie recieved an award at school for excellence in academics and my parents were able to see him recieve his award as well.

The kids were thrilled to have grandma and grandpa around to show them the classrooms and share such special days.

Oh... and tomorrow I need to tell you all about our Upcoming Make A Wish.

Dear Mr. President (From Kate)

2009-01-09T18:48:00.000-08:00

January 6, 2009
Dear Mr. President,

How are you doing? How do you like the White House and being the President?
My name is Kate, Katherine N (last name). I like horses, what is your favorite animal? I am six years old - what about you?

Mr. President, can you please make a rule that people should not smoke anywhere at any times? I think this is important because it is bad for people and it is bad for the disease that I have. I have this thing called primary immunodeficiency that means I have to take a needle with medicine in it. I take it subcutaneously instead of as an IV in my arm. Smoke is really bad for me because it could make me really sick and die. It’s very bad for my lungs and it could make me have problems with breathing. When I was a baby I have got some lung damage from lung sickness, so I don’t want it to be damaged more by people smoking.

Thank you for being the President. Bye!

From

K. N. (last name)

A Letter to The President Elect...

2009-01-07T07:08:00.000-08:00

Scholastic is having a contest for kids to write a letter to President Elect Obama, the winners (there will be 200) get a collection of books on the presidents. I asked the kids to write their letters. The letters really show what is on their minds, and just how much power they think the President has!

January 6, 2009
Dear Mr. President,

Hello. How are you? Are you busy? I have something I want to tell you. My name is Charlie (Last Name) and I am 8 years old. I was born on Election Day, November 7, 2000. That was one year before the Terrorist Attacks. I go to a public school in (City), CA.

I was born with Primary Immunodeficiency, that is when you don’t have enough cells in your body to protect me from germs. I have to take a special medicine called Gammagard Liquid that comes from human plasma that is donated by people, from both the Red Cross and Baxter. I have a sister and brother that have the same disease as I do. I do my medicine Sub-q. Sub-q is a type of needle that goes in the leg and the belly. I do my medicine once every week, with three needles. I like this because I don’t have to miss school to get my medicine, and it makes me feel better.

I want you to please make sure that kids that have primary immunodeficiency get to do their daily activities all around America. You can ask Doctors and Nurses to help kids, by giving them the medicine that they need. Also you can tell people to donate plasma so kids like me can do lots of things that others kids can do.

Love,

Charlie K. (last name)

Tommorow...Kate's letter

Back To School Monday.

2009-01-05T20:06:00.000-08:00

I so think I should homeschool. I hate the back to school Monday after a vacation, especially because today was one of those days. Back to real life. Back to school, back to homework. I totally missed the kids, wished we were hanging out - at a museum or something... I ended up volunteering in Charlie's classroom, after getting a couple hours work done around the house.

The kids had to bundle up this morning - a chilly 40 degrees as we headed to school.

Even little Tommy bundled up... you know, Skater Style.

Bella on the other hand, enjoyed relaxing without someone waking her up to love on her. Over. And Over. And Over. Again.

For The Love of Reading

2009-01-04T12:03:00.000-08:00

I used to teach junior high level language arts, which makes the following even more dear to my heart.

I'm truly a reader, and I've done everything, and I mean, everything in my power to turn my children into readers, we easily have more then a few hundred books, I've been reading to them since birth. I will almost never say no to a new book, and I remember crying when I realized that my older two kids could read (and can't wait for Tommy to get to that point).

For me, a love of reading, developed early, is one of the best gifts a parent can give to their child, I honestly believe it is one of the best indicators of future success for a child. So, for me, watching my child love a book, swells my heart with joy and pride.

I couldn't help but share these pictures of Charlie, literally with his head buried in a book last weekend.

Christmas brought the first two books of a new series of books to Charlie The Capital Mysteries by Ron Roy, the same author who wrote the ABC Mysteries. It's a great series, Charlie and I have each read books Who Cloned The President and 2 Kidnapped At The Capital and will start book 3 tomorrow (we had to order it).

I'm loving this series for him, for many reasons, he's already interested in history, and these take place in Washington DC a city rich in history - Charlie was thrilled when KC and Marshal were in the White House looking for a secret passage way! He now knows a little more about what the Capital Building is, and looks like. More then that, Charlie loves to read, but mainly fact oriented books the DK Wonder books, EyeWitness so this was a bit of a step out of his normal reading, and he loved it, and read for pleasure!

I was so enthralled with watching him read, no devour, these two books that I couldn't help but get pictures of him, as he did what I always did in my childhood, finished a book in a single sitting.

The Fur Real Pony Saga

2009-01-02T05:46:00.000-08:00

For three years Kate has asked for the exact same thing for Christmas - a Fur Real Pony. That's all she wants, it's all she's wanted. A Fur Real Pony, for those who have never seen one, is a horse that interacts with you, looks at you, neighs at you, eats a pretend carrot and makes the little munching sound. However the horse, depending on where you look retails for anywhere from 250 - 350$. This is not just a TAD too extravagant for our kids - it's, in our opinion, WAY over the top. I am a person who easily talks myself in or out of just about anything, and spending an obscene amount of money on a toy that will last a year, maybe 2, just can not be justified.

2006 Year 1 - Kate asks for the Fur Real Pony and we make the decision we will not buy it unless we find a significant sale...then we find it on clearance for $199 at Sam's Club, and bought it - great sale, she will only get two very small additional gifts from Santa that year.

The very day we buy it, we picked Kate up from preschool to find out that she had gotten in a MASSIVE amount of trouble that day, and she didn't just get in trouble, she got in trouble for the one thing I absolutely will not tolerate, excluding someone. It seems a little girl sat down next to her for lunch and my little Kate, then 4, told her she was NOT allowed to sit next to her for lunch - and made the little girl get up and move. Very little would upset me more then this.

I was horrified, especially because Kate and I had talked about this issue over and over and over again because her little girlfriend constantly was doing this to other kids. On the way home, I asked Brian to return the horse (which, to clarify, Kate had NEVER seen), because I just didn't feel like her behavior deserved such a large and (in our family) extravagant gift. When we got home, after a long lecture from Mommy while Daddy was out returning the gift, Kate finally got out her side of the story.

Cue Mommy guilt: Kate had been very rude to this little girl....because her nose was green and snotty and she was coughing and sneezing and I've always told her NOT to sit near kids who look even remotely sick (you know, chronic illness, sick easily - that whole thing).

By the time I figure this all out, and decided I had completely, and totally over reacted - Brian had returned the horse, and as the LAST ONE at Sam's Club, it had been bought by someone else. (Don't get me wrong - Kate was rude to this little girl, but it my mind, it was different because her motives were correct, even if her delivery was really bad and in need of correction).

2007 - Kate asks Santa for a little sister, a plane of her own, and a pony for the backyard - clearly she believes this man is magical. I explain that Santa can not bring a little sister, a plane or a real pony for the backyard. She then decides all she wants is the Fur Real Pony (as a side note, my girlfriend's niece once asked for a Real Fairy, or Harry Potter - not the book, the real boy for Christmas - I guess girls are hard to please early).

This year, no Fur Real Pony comes for Kate. I don't see it anywhere on sale, and I can't justify that kind of money. After opening all of her gifts from Santa, she cries, because there is no pony for the second year in a row. I'm equal parts pissed (doesn't she know how flipping expensive this toy is? How ungrateful.) and bummed (I want her to have a great Christmas, and she's right, she has not gotten what she really wants and Christmas should be magical at least once in your lifetime). Kate tells me Santa never gets her what she asks for. Cue Mommy guilt two years in a row. 2008. Christmas lists consists of Fur Real Pony, Digital Camera, Pink Uno, Horse Stuff, and Pictureka.

Do we get the pony? The economy sucks and it's still $299. There is no back and forth on this decision. She can not have a $299 dollar toy. Unless I find it for dirt cheap, she's not getting it.

We walk into Costco one day and find it for $179. We make the decision to buy it and then talk ourselves out of it, we both continue to feel guilty at the thought of spending that much money, especially because we like to keep each child to about $125.

Despite how badly we want this for Kate, and know how badly she wants it, we decide not to get it. Which, makes me cry. I want her to have that one gift she remembers for the rest of her life (like my Cabbage Patch doll was for me many moons ago). I just can not justify close to 200 for a toy in this economy. I try to prepare Kate for the idea that we don't always get what we want.

Then... I walk into Toys R Us the week before Christmas. I stop there on a lark with a girlfriend after dropping the kids at school. There is 1 Fur Real Pony sitting in the front of the store. On clearance. For $99.98. I stood at it, holding the box so no one else could get it until my girlfriend came over to help me pick it up and put it in the cart.

A little girl got her wish this Christmas.

Stolen... 2008 Wrap Up

2008-12-31T23:03:00.000-08:00

1. What did you do in 2008 that you’d never done before?
Traveled all over the US and to Belgium.

2. Did you keep your new year’s resolutions, and will you make more for next year?
I don't recall even making one last year... For next year, my resolution is to blog at least 6 times a week, I SO miss this.

3. Did anyone close to you give birth?
Nope

4. Did anyone close to you die?
No. Thank Goodness.

5. What countries did you visit?
Belgium, France

6. What would you like to have in 2009 that you lacked in 2008?
A church where I feel like I belong, that isn't an hour away from home.

7. What dates from 2007 will remain etched upon your memory, and why? July of 2008 - it was the best, most relaxing month I've ever had with my children and husband. EVER.

8. What was your biggest achievement of the year?
Overcoming my fear of flying.

9. What was your biggest failure?
Not being patient enough with my kids.

10. Did you suffer illness or injury?
Illness. Over and over and over agin. Pseudomonas, Shingles, Sinus Infections....

11. What was the best thing you bought?
My camera. Cannon 40D

12. Whose behavior merited celebration?
All three kids have come SUCH a long way with their manners, for sure this has been the light of my year.

13. Whose behavior made you appalled and depressed? The kids who bullied Charlie at the end of 1st grade - it was so appalling, and depressing.... and is closely followed by a doctor who pissed me off more than I ever have been, and did something so wholy inappropriate it made me question the entire medical system.

14. Where did most of your money go? Medical Care. Children. Gas.

15. What did you get really, really, really excited about? Meeting the people who donate and the people who collect my children's pasma, and then those who turn it into their medicine.

16. What song will always remind you of 2008? You Raise Me Up.
17. Compared to this time last year, are you: (a) happier or sadder? (b) thinner or fatter? (c) richer or poorer? Happier, Same, Poorer.

18. What do you wish you’d done more of? Sitting and Listening to my kids.

19. What do you wish you’d done less of? Crying.

20. How did you spend Christmas? Opening gifts at home, then traveling to my parents.

21. Did you fall in love in 2008? Nope, did that nearly 10 years ago.

22. What was your favorite TV program? NCIS

23. Do you hate anyone now that you didn’t hate this time last year? No, hate seems to be so wasted, I think hating people gives them more time they don't deserve.

24. What was the best book you read? How Doctors Think and Life Disrupted (Reviews coming this month).

25. What was your greatest musical discovery? BareNaked Ladies Snack Time CD

26. What did you want and get? The chance to tell Plasma donors that what they do matters.

27. What did you want and not get? My new car.

28. What was your favorite film of this year? Ummm... I have three kids 8, 6, and 4...I have only seen animated movies...maybe WallE

29. What did you do on your birthday, and how old were you?34, and I went to dinner with my husband.

30. What one thing would have made your year immeasurably more satisfying?Taken a weeks vacation with my husband.

31. How would you describe your personal fashion concept in 2008? Casual.

32. What kept you sane? This question assumes I am sane.....

33. Which celebrity/public figure did you fancy the most? Paul Newman...in a....Gee I want to be that generous" sortof way

34. What political issue stirred you the most?The presidential election.

35. Who did you miss? My best friend. I'll always miss her.

36. Who was the best new person you met? I can't limit it to one... I met so many people who made the last 4 years of my children's lives possible. Each of them holds that place in my heart!

37. Tell us a valuable life lesson you learned in 2008. Manners Matter, and more then that....Take the time to say Thank you.

38. Quote a song lyric that sums up your year:

What if it all goes wrong?
But what if it all goes right?
What if it all works out?
What if the stars line up and good luck rains down?
What if you chase your dreams, and it changes your whole life? Yea, what if it all goes right?

or....

I’m letting go
Of the life I planned for me
And my dreams
Losing control
Of my destiny
Feels like I’m falling and that’s what it’s like to believe
So I’m letting go
This is a giant leap of faith
Trusting and trying to embrace
The fear of the unknown
Beyond my comfort zone

We Wish You A Merry Christmas...

2008-12-24T09:01:00.001-08:00

Last weekend, we attended our family Christmas party, and I got a few pictures, I wanted to share.... along with a few feelings.

I was so incredibly proud when the kids saw Santa, and got a gift, and Charlie stopped, turned around, and hugged, and thanked Santa for his gift.

Don't you remember this feeling? That overall joy, that moment of absolute excitement when you sat down on Santas lap, and got that present...

The question is... is he scared? Underwhelmed? Posing?

And then... there is this one, the love of my life. Look at that smile, combine it with the eyes and you'll know the reason I need nothing for Christmas, I have everything I need, as long as...of course, you add in the picture below.

Merry Christmas to all....and to all....a good night!

(Tune in after Christmas...little Miss Kate has a suprise coming that's going to KNOCK her socks off!)

We Should All Know Ourselves So Well.

2008-12-22T20:52:00.001-08:00

Today, after spending an hour looking through a book of presidents and their party affiliations Charlie announced that he's a democrat. When I asked him why, he replied...."Well, because I like to solve other people's problems."

It took everything I had not to laugh outloud.

We proceeded to ask Tommy what he is and before he could answer, Charlie piped in.... " he's a Republican....he likes to shoot things."

Ever the peacemaker, and people pleaser, Kate announced she is both... because she can't stand to choose sides.

Yes, we should all know ourselves so well.

Christmas Questions....

2008-12-10T05:48:00.000-08:00

Today... it's audience participation day..... let's hear from all of you, I want to know about your holiday traditions...

1. Does/Did Santa bring gifts to your house?
2. Wrapped or Unwrapped? If wrapped does he wrap in a particular way?
3. Does Santa bring a specific number of presents, or is it a monetary value?
4. What do you do on Christmas day?
5. Any other cool holiday traditions?
6. Are you done with your shopping?
7. If you do not celebrate Christmas, what, if anything do you celebrate this time of year, and tell us about it.

So, for my own answers,

Yes, Santa brings presents to my house, they are wrapped, and all the presents have been wrapped in white tissue paper, with a red ribbon on it, since my mother was a little girl. This was started because my grandparents realized tissue paper was cheaper then wrapping paper, however, it's continued through even my children (however, Brian and I are SERIOUSLY debating stopping this, Brian's family wrapped in regular paper and he wants to switch.... we'll see). In our house, Santa brings three gifts, I try to tie this into the real reason for the season, so like Jesus received from the 3 wise men, our children get three from Santa (and a stocking) plus one or two from us - either one medium gift, or two smaller ones). When I was a little girl, I believe my parents did it more on a price that they set, and stayed within it.

On Christmas day, we've always had a big holiday celebration with my family, however, last year all three kids were expecting the chicken pox, and because my grandmother is in her 90's, we did not go. This year, the kids will open their gifts at home, stay home till about 10 or so (we'll be opening at 5, trust me) and then head to my parents house, 4 hours away. This will be the FIRST year, we've ever traveled more then 20 minutes on Christmas, but my parents and grandmother moved to the coast, and my grandmother is getting up their in age, so it's worth the trip.

As far as other traditions, we have many, but by far the best is a holiday party we have called the Mays party..... I'll write more about it in the coming weeks.

Wanna peek?

2008-12-08T05:56:00.000-08:00

Remember I said we had a photoshoot a few weeks back? I happened upon the photographers websiteand caught a picture of Kate on it.... it's adorable!

www.erickleinphotography.com

on the menu click on portfolios, then more life, it's the last picture in that set! (there is pull down menu if you place your cursior on the right side of the picture).

What do you think???

An Uncommon Bond

2008-11-18T05:01:00.000-08:00

This is my daughter, Kate. She was born missing part of her immune system. This disease requires her to get infusions of a product made from human plasma. That plasma is either collected whole at centers across the nation or comes from sourced plasma taken from blood donated at the American Red Cross.

The man standing with her is her friend, W., W makes her medicine. He works at the plant where that plasma is processed to make her medicine. She has known him for the last 2 years and just adores him.

Last Tuesday at his work, they held a blood drive, and out kids went down to say Thank you, and to hang out with the people who make their medicine. I wish you all could be there, to see the way they light up around these people, to see my children play dominoes with the people who save their lives. Words are woefully inadequate when trying to describe the intense emotions I feel watching my little girl take W's hand and go with him to donate blood, because she is going to show him how to get a needle stick and be brave like she is.

As a parent, there is nothing, and I mean nothing more humbling then seeing the people who make your children's medicine want to give more and more, to the point of donating their own blood to help them.

He's 8 Now

2008-11-15T21:38:00.000-08:00

This month, Charlie turned 8. In honor of that event....

Charlie in 8's

8 Things Charlie Loves

1. World War 2.

2. Space

3. Star Wars

4. Computers

5. Reading

6. Learning

7. His Family

8. Disneyland

8 Things Charlie is Willing to Eat (without barfing after)

1. Grilled Cheese Sandwich.

2. Hot dogs

3. Nearly any kind of Pasta

4. Mac and Cheese

5. Cheese Pizza

6. Garlic Bread

7. Ice Cream

8. Cucumbers

8 Bizarre Things Charlie Knows Way Too Much About

1. Animals (He once spouted off with Ant Eaters can eat 50,000 Ants a day... I, on the other hand, didn't even know ant eaters were called Ant Eaters because they eat ants.

2. The History of Potato Chips (If you need to cut them out of your diet, call him, he'll ruin them for life for you).

3. World War 2 (When an 8 year old knows the names of the battles, it's gone too far)

4. The Ocean (Again, if you never want to get in the ocean again, feel free to ask Charlie about sea creatures and the germs they can pass)

5. The Court System (He's in a play about a trial, and has recently begun using words like Prosecuting Attorney, Public Defender and Sentencing Phase)

6. Star Wars - (Knowing the name of the characters seems normal to me, but knowing their home planet and species is approaching freaky).

7. Kissing Girls (This should be self explanatory - but I so did not expect this one at 8 - 80 would have been slightly more comfortable for me).

8. The Immune System (I have three kids with this disease, and only one of them has told his doctor he wants to find a way to replace t-cells without a bone marrow transplant....which I might be okay with....but he was four when he said it).

Now, my favorite part....

8 Things I love aboout Charlie:

1. How incredibly kind he is.

2. The way he lays on the couch to read

3. The way his mind works

4. How compassionate he is

5. How involved he wants to be in making the world a better place.

6. The way this school year is shaping him into such a confident young man

7. The quickness with which he falls asleep each night

8. What a great big brother he is

FAIL

2008-11-14T20:20:00.000-08:00

The Titanic.

New Coke.

Waterworld.

Dayna.

What do the above four things have in common?

They all failed.

The good news is, I'm in good company. The bad news is.... I failed.

So, yesterday we had a big huge photo shoot, and we spent literally 8 hours being photographed, Brian, the boys and I enjoyed the experience, but would not actively seek this out again. Kate was the focus, and that kid got bit by the modeling bug (something I seriously doubt we would EVER let her pursue). We got home. TIRED. Instead of blogging, I went to bed. So much for 30 days straight of blogging.

Darn it.

Some Kids Like Cheese....

2008-11-12T18:57:00.000-08:00

....and then there's Tom.

This is what happens when he is left alone to pour Parmesan cheese onto his spaghetti...

So, apparently, he likes a little spaghetti with his cheese.

His Sleep Habits

2008-11-11T20:02:00.000-08:00

Thomas, and his sleep habits are darn near legendary in our house. He loves sleep, doesn't love going to sleep, but really, really loves sleep.

You see, most days, unless he is beyond horrible and tired he has the hardest time falling asleep at night, so frequently he lays in bed, and will sing, and chat to himself - every once in awhile, he'll shout out something like "Wow, I am still not asleep yet." There is no point in trying to expedite this process, because if he can't sleep, nothing is going to help.

When he finally falls asleep, bless him, because he is down for the count. He very rarely wakes at night, and has been known to wake in the exact same position he fell asleep in.

He will even sleep through Mommy taking pictures of him all night long as I did a few months back.

Then... you have to deal with waking him up, because Tommy, if given the opportunity will sleep until 10am. When he does wake on his own, one should not approach him for conversation for at least 30 minutes. If you must wake him up, it should be done quickly and one should wake him, but give him 15 minutes to try to wake up while laying in bed, or on a floor, and NOT engaging in conversation.

As an aside....One should never laugh at his bedhead, until he is completely awake. This could prove hazardous to ones health.

As I think hard about this one, this is awfully close to his Daddy.

This is Jeff

2008-11-09T17:11:00.000-08:00

Jeff is one of our camp counselors. I'd like to show you pictures of Jeff with someone other then Tommy, however, Tommy rarely lets Jeff near anyone else, because Tommy wants to be Jeff when he grows up. Which is perfectly fine with me, because I'd be thrilled if my boys grew up to be even 50% of the man he is.

Tonight, Brian and I are going to dinner. ALONE. This doesn't happen so much anymore, and it wouldn't be happening tonight, except Jeff called, and he is going to be in the area after a weekend of volunteering at camp so he told us he is coming over, and watching the kids, so we can go out. He said it like there was a chance we'd say no.... say it with me.... LET ME RUN TO THE CAR AND LEAVE THE CHILDREN WITH JEFF. Honestly, because that's just the kind of man he is. The kind of guy kids want to be around, who is willing to watch three, at one time...who offers to come over.

Tonight, for the first time in more than a month, Brian and I are going to be alone. Without kids. We'll probably fall asleep at dinner. But no one will wake us up because they need something.

So, let's all say it together.... THANKS JEFF!

Advocating For Our Children's Health

2008-11-08T18:28:00.000-08:00

So, rather then answering all the questions in one post, here is the answer to number 1, if anyone has more question - bring it on!

Tiff at My Three Ringed Circus asks: Here is a question for you. Were you always a strong advocate for your kids health or is it something you have had to learn? I am not very good at standing up to the doctors yet.

Hmmm.... let me think back.... no flipping way I was always a strong advocate, or at least, I was not confident. Not one, but two doctors told me it was not the kids that were sick, it was me. Can you imagine what that did to my psyche?

Our first pediatrician told me I needed counseling because I didn't know how to parent and Charlie was hyperactive, not sick (he was 18 months old by the way). I stood in front of him, and cried like a 12 year old. I may have collected his records and left, but it shook my confidence to the core.

Within a year, I had Kate and both kids were in the hospital at once, he with Rotovirus and she with the flu, I demanded an Infectious Disease Doctor be brought in, because we had missed an appointment with one at UCLA - by this time a disturbing pattern had emerged, frequent infections, low grade fevers, you get the picture. The infectious disease doctor told me Kate (then 4.5 months) was too fat to be sick. That fat babies were not sick babies and that I should stop taking her temperature and move on. I stood in front of him and cried like a 3 year old being scolded.

Truth be told, being an advocate is a process, I think the more you learn, the more confident you become. The more you learn to trust your instinct the better advocate you become. I'm often afraid I'm going to look like a hyper sensitive, over reacting mother, but none the less, I follow my instincts, even if it could make me look like a fool.

Last year, when Kate had a massive sinus infection, nobody else believed she had it, even her wonderful nurse whom we adore and has my kids dialed in, thought she wasn't too sinus-y. Brian and I were sure she was very infected, and INSISTED she be given a CT scan. The entire way home from the hospital I felt like the worst parent because I was horrified that I had made a mistake, exposed her to all this radiation, and what if I was wrong? When it turned out she was as infected as I thought (and needed a PICC line and 21 days of IV antibiotics) I had a moment of being relieved and then I felt guilt for 6 months after. Of course, I wanted to be wrong, but I was also worried about being wrong.

I think being an advocate is learning mostly to trust your instinct and follow it, and to teach our children to trust theirs.

Doctors practice medicine - notice the key word - PRACTICE. If they had perfected it, they would be God, not a Doctor. Of course, some of them have that whole process confused, and they think they are God. I guess, I see it as my job to remind them their not.

I never want my children to accept less than the respect they deserve as a patient from a doctor, for me, when I'm in the room, I imagine what lesson I want to teach my children. They have the unfortunate reality of living this disease for the rest of their lives, and I want to empower them now, through my example, so that when they are adults, they can do this without me. Their lives depend on it.

All that being said, Tiff, be gentle with yourself. The entire first year of my kids diagnosis process is a blur, a massive huge blur. Allow yourself the chance to grieve, you have to take the time to grieve the loss of what you thought your life, and Ivy's life was going to be, so you can accept what it is, and become the master of this process.

I think it takes a good year to get a handle on it all - and I believe that year starts at the point of stability - because until you get to that point, it's all crisis management and I'll tell you what I've learned over time, in crisis management mode, it's difficult to see the forest for the trees- that comes after the crisis. Be gentle dear friend, be gentle.

This Blog Post Will Suck

2008-11-07T19:25:00.000-08:00

So, I'm going to answer all these questions tomorrow. Right now, I'm feeling pissy, and mad at the medical establishment. This week, Tommy was given a vaccine he didn't need for no reason other then to see what would happen...well, what happened was we spent two days with a crying, fussy, in pain, 4 year old who couldn't move his arm above his head. He's on 5 medicines multiple times a day to help him get rid of the reaction to the vaccine he never really needed in the first place.

One of the medicines he needs is available in liquid or meltaway tabs - we choose the meltaway tabs, they are easier and don't need to be refrigerated. Ready for the difference in price? $40! That's WITH insurance!

When you add to it, that I finally, out of desperation called my own doctor to ask for help with a sleep issue (what sleep issue? Well, I wake up an hour earlier each day, so it started at 4 and I'm now waking at 1 am and unable to sleep). They told me they were going to give me Ambien CR so I can sleep and break this cycle. Well, that would be great, if they had actually called the prescription in.

I'm passing tired and just becoming crabby. VERY VERY CRABBY.

Question Time.

2008-11-06T16:46:00.000-08:00

So, I know a lot of people who have done the "Ask Me A Question" Posts - where the writers shamelessly ask for questions for the readers so they can blog....I've always avoided this type of post. Until today. So, dear readers, considering the number of hits I get, I have very few comments - so today, come out of lurkdom... and ask a question....any kind of question you want, and I'll do my best to answer it.

Want to know how tall I am? How I got so crazy? My favorite needle site? LOL. ASK AWAY!

Frankly, it's better than me posting how angry I am right now with the medical establishement who has wanted to revaxinate my baby for the last 6 months, and I've avoided it, because I didn't think it was the best idea.... after all this time, I gave it, and now, he's having an awful reaction. If I blogged about it, it might be a little too explative filled... I need a little distance before I post about poor Tommy and how mad I feel.

Questions - anyone?

Election Through the Eyes of a Six Year Old

2008-11-05T19:47:00.000-08:00

So, I've been deeply bothered over the past few weeks that Kate has repeatedly declared that she hates Obama, while we supported McCain, I would NEVER, EVER teach my children to hate anyone. Ever. When asked, she always replied that she hated him because he's a smoker. When pressed further, she would always clam up.

This morning when she woke, she came out and asked me who won the election. When I told her Obama, she got teary eyed (which, was even odder to me, while we voted for McCain, crying seemed like more of a Die Hard McCain fan thing...and frankly, I was more in the column of the "lesser of two evil" voters).

I had her sit next to me on the couch and began explaining to her that while we voted for McCain yesterday, today, we needed to stand behind our new President Elect. I explained as carefully as I could that yesterday everyone was divided over who we wanted, but that today, we needed to stand united as Americans behind Obama. She listened and seemed to understand.... then.....

With those adorable blue eyes she looked up at me and asked in almost a whisper "But, Mommy.... I don't want to smoke, it's bad for my lungs and my lungs are already bad, and is he going to make everyone smoke now?"

I tried very hard not to laugh, and to answer her question. It was obviously a good enough answer, because by the end, she wanted to know if she could give 1/2 of her vote to him now.

Clearly it's time to have a discussion on the LIMITS of the power of the Office of the President.

:)

Voting

2008-11-04T18:21:00.001-08:00

Today, I wore my Grandfather's vest all day. He was the vest wearing kind of guy, and I always loved how handsome he looked in them. I can't look at a vest without thinking of him. I got the vest, as each of my sister received on, after he passed away in June of 2000.

My grandfather, after who Charlie is named, was a real politico. He loved politics, and he would have LOVED this race. I wore his vest all day today, because I wanted him to be here in spirit. He would have loved this election. In all honestly, I would have loved hearing his opinions on this one, he would for sure have opinions, and strong ones.

If, however, he was really watching me vote today....he has rolled over in his grave knowing I did it, and I did it in his vest! I know EXACTLY what he would have said....

"It's okay Dayna, every American has the right to be wrong. Just like you are."

I'm sure if he saw me walk into the polling place with all three kids (they insisted I not vote while they were at school - as they really wanted to be a part of it), wearing his vest, and voting the way I did... he's horrified, and proud all at once.

By the way... based on the number of hits I'm getting.... feel free to say Hi! I'd love to know who you are!

Just How Tired Can One Child Be?

2008-11-03T17:35:00.000-08:00

Have you ever been this tired?

Just to clarify, it looks like he's on the floor...he's not. He's on a coffee table. Asleep after Trick or Treating. We asked him to take of his costume, and come give us a kiss when he got into his pajamas.

Instead, he got into his pajamas, got half way down the hall to give us a kiss, made a pit stop on the coffee table too tired to walk even the other half way down the hall...and fell asleep before he could even stand back up. In the course of about 20 seconds.

I know I've been this tired.

Anyone else have cute stories about where your kids have fallen asleep?

Sub-q, SCIG, Subcutanious Immunoglobulin.... The new way of doing medicine around here.

2008-11-02T18:00:00.000-08:00

If you need us on a Wednesday afternoon, you can find us, chillin at home, in front of the TV, with 6 needles hooked inside Kate and Charlie.

I know I've mentioned a few times that the older two kids have chosen a new route of administration of their medicine. If you are new to this blog, I'd suggest going to this post about what we have and reading it first. If you are an established reader, I thought I'd take a little time to explain it, and show it.

You see, for the last 4 years the kids have done their medicine (IVIG, or Gammagard Liquid made from plasma) the IV way - a needle in the vein. Last year back when Kate went through her "I hate IV's, I hate being sick, I hate all of this!"stage her doctor approached her about doing her medicine a different way.

Kate has sucky veins. So does Charlie. Tommy's are all right. But for Kate and Charlie, sometimes it takes multiple sticks to get a single vein good enough to infuse into. In addition, they have to miss half a day of school every time they go to clinic, which for Charlie is not a huge deal, he liked the one on one time with me, but for Kate, the thought of "missing something" the thought of not playing at recess with her friends because she's at clinic.... it was almost more than she could take.

The new method is called sub-q (also referred to as scig, and subcutaneous immunoglobulin). It's the exact same medicine put in a different route. Here are the differences:

SCIG
1 time a week 1 -2 hours
3 needles in subcutaneous fat can use numbing cream
no vein needed
at home

IVIG
Every 2 -4 weeks takes 4 - 6 hours
1 needle in 1 vein but we could not use numbing cream as it affected veins
Must get vein access, can be done at home or hospital

So, here is how it works, each kid uses numbing cream and tagaderm an hour before to numb the skin.

They like to have one needle in the belly, and one on each leg. When they get hooked up using three needles that look like this:

This is what it looks like in the skin:

Kate shows how big the needles feel like they are (yes, she'd make a great fisherman).

If you look to the right of Charlie, that is a pump, and it is used to pump in the kids medicine over the course of a couple hours (he wants you to know this picture was his first time doing Sub-q).

Even though Tommy isn't doing Sub-q right now, he is still a big part of everything, he likes to do the comforting and has appointed himself "Helper."

Charlie says he likes sub-q better because "I don't have to miss school any more and I can do my daily thing and I can get up and walk around. I can watch tv which I'm normally allowed to do on a school day. Also it is the greatest way I've ever done my medicine. When I grow up I want my son to do Sub q, well if he is born with the same disease or some other disease."

According to Kate, "I like doing sub-q because it's fun even though it has a lot of pain when the medicine starts going in for the first 60 seconds. I would like to do sub-q all the time." This is, by the way, the disadvantage for Kate, she has a bad burning feeling for the first 1 minute the medicine goes in, but has learned to count the pain way (with a few tears).

As I always say, it's not what I planned... but it's no the worst life either.

I Hate This Election

2008-11-01T07:25:00.000-07:00

I hate this election. On one hand, I'm thrilled that so many people seem poised to vote, and get involved, yet it seems like we've taken a turn from involved to insulting and nearing harassing.

Yesterday, we were at Charlie's birthday party, he's turning 8 next week and wanted to have his party on Halloween. At the end of the party as the kids were sitting at the tables eating snacks and juice and having cupcakes, the parents were gathered around a bowl of chips chatting about the upcoming election. We live in a fairly small enclave on Conservatives in a very liberal Los Angeles, so it's not surprising that the group was mainly McCain supporters.

The adults were all talking about the upcoming election, and one child's mother, not a conservative, left the table, believing it's improper to discuss politics or religion in a mixed setting and knowing she was vastly outnumbered. She related to me a story that is the prime example of why I hate this election.

Her 8 year old son was "ganged up on" during a carpool because his family has a different position on one of California's propositions then all the other kids in the car. The other children in the car repeatedly talked about why he was wrong in his position and the parent driving did not intervene. The discussion as she related it, mainly revolved around morality.

I've noticed some things over the last few elections that disturbs me greatly. Both sides seem to be in the "I'm right and the other side is bad because they don't agree with me" mode. I've seen it on multiple levels.

It seems to be:

I'm right, and the other side is... naive, uneducated, immoral, not concerned with security, paranoid, ignorant, intolerant, sexist, racist, homophobic, or any other insult you can throw in there.

It's getting old.

When I worked for the Minnesota Republican party (yes, I did, after college, running state elections in Minnesota), my cousin, someone I really respect, whom I think is very educated, thoughtful, and wonderful was working as political appointment of the Democratic governor in California.

She's a die-hard Democrat. We grew up together, I know how bright she is, how in tune she is. I know, beyond a shadow of a doubt that she loves our country and wants the best for it. It was then I learned that the other side may not agree with my position, but at the core, they believe what they believe because they want the best for our country.

Maybe that's what I've learned overtime, and it's why I'm so ready for this election to be over, it seems to me that we've gotten less and less polite, and more and more willing to make our positions more secure by insulting the other side.

I don't agree with either side 100% anymore (heck, I'm not even sure I've made up on my mind on half of the propsitions California but I have no doubt that everyone loves this country and thinks that they can help address the problems we are facing as a nation, and as individual states.

I just wish we could all be a little more respectful of people with different opinions, because this is what we're teaching our children, that if people don't agree with you it's okay to insult them, call them names, it's okay to hate the other side because they don't agree.

Honestly, I don't care what it is, that someone believes, I just want them to care enough to believe in something...politely.

What about you? Are you ready for this election to be over?

(By the way, day one of a month of blogging... I hope I can do this)

Have I Lost My Mind?

2008-10-31T17:56:00.000-07:00

I'm crazy. I miss blogging, and yet, I can't seem to do it on a regular basis. So, to get me back in the habit of posting, I've joined thethritydaychallenge. I'm going to blog EVERY DAY in November.

I can do this. I can do this. I can do this.

CAN YOU?

When A Mural Takes Your Breath Away...

2008-10-27T05:15:00.000-07:00

Last week I was in Missouri and Arkansas going around to BioLife Plasma Services centers telling our story, sharing the journey we've taken from diagnosis to now, where we live much more normal lives because of the plasma collected at BioLife. I've had a message since the very first time I saw our kids medicine made from plasma (the facility where the plasma is turned from plasma to medicine is very close to our house, and I was lucky enough to tour it).

The message I've been sharing for the last 2+ years? WHAT YOU DO MATTERS. Every donation, every drop of plasma, every time those employee's have done their job, our kids have been able to be kids because their there. Our kids go to school, and fly on airplanes because of BioLife and Baxter.

I have to admit, when I re-live the worst time in my life over and over again over the course of 4 or five days, it's painful, and difficult, I have trouble sleeping after, and it's rarely with my kids near my side so I can hug them after. However, it's worth it, because I get the chance to talk to donors, and employees, and tell them just how important they are, how much this journey we're on depends on them.

You see, once upon a time, I felt very little hope for our children, and their future, and today....today I know that my children will truly LIVE! They do all the things we wanted for them, to play, explore, experience, laugh and love! All because people donate plasma, people collected it and people turn it into the life saving therapy we need.

Last week, I was missing my kids, and feeling a little down when I walked into the Joplin, Missouri center. It was half way through my trip, Kate was at home, sick with a high fever, it was treatment day, and while I'm always thrilled to be in a center, I was having a moment of wishing I was home. Some days, I wonder if it makes a difference, if me going there and sharing our story sticks and they feel it in their heart, and if they carry it with them after I am gone. It's not my story I want them to feel, it's the importance of their job, and how much they matter to the world.

I was meeting the center manager in Joplin for the second time, we had met briefly in Florida when I had shared our journey and my message nearly a year ago, this was the reason she wanted me to visit her center, so her staff could hear the message.

She had seen the video I created for BioLife donors about our families journey, but this was the first time we'd be able to spend time together in her center. As I was standing, talking to her, something on the wall to the side of me caught my eye. As I turned I was stunned to see this:

I'm never speechless. Ever. Except for that moment. And the 10 that followed it. I stood, with my hand over my mouth, in stunned silence. I had been forewarned that there was a surprise for me at the center, but having no idea what it was this left me speechless and stunned.

Julie, the center manager hired Nicole, an artist to create this mural to remind her donors and staff that "What You Do Matters."

I've always wondered if I'm getting through... if it makes a difference. I've always worried that without follow up, my message will be quickly lost. For that one moment, as I stood in that center I've never been more proud of this journey. I've never been more willing to keep telling our story, and I've never, ever been more humbled then I was in that moment.

Tommorrow....more on the Mural, and meeting the artist....

Overheard....My 7 year old

2008-10-07T09:40:00.001-07:00

APparently, I should have named him Alex. As in, Alex P. Keaton.

Charlie was discussing how much he loves the Dodgers.... and the Cubs. He felt very conflicted about the latest play off games involving both teams. When asked which team he wanted to play for when he grew up, he stopped, looked and responded.

"Neither. I'd like to own them."

That's my boy.

Party Foul: What Would You Do?

2008-10-06T05:52:00.000-07:00

I'd love to get the readers opinions on this one.

Last Friday I hosted Kate's 6 year old Horse themed birthday party. At my house. A drop off party. With 16 screeching little girls. I take that back, 15 screeching little girls and one very offensive, rude, difficult 6 year old classmates of Kate's.

It's ironic, because Kate did not want to invite this little girl to her party, she kept telling me she was difficult, and mean, and that nobody liked her. I kept saying it wouldn't be fair to invite all the little girls, and not her. That we don't leave one person out of the group. That it would be cruel to leave one child out when you are inviting the rest of the group. We talked about how she would feel if she was the only child not invited to a party (sad, hurt). We discussed how we could deal with this child (with kindness and love). We even problem solved if the other girls said "I can't believe you invited her" ("I invited everyone in the class because I want everyone to celebrate with me, and besides I don't want to hurt people, and her feelings would have been hurt if she wasn't invited").

Then we had the party.

By 15 minutes into the party, I wanted her to go home after she had all the little girls cornered in Kate's room screaming at them to SHUT UP, that this wasn't not their house, and they could not play with the toys and that they were stupid. A brief, we don't yell in this house, and we don't use that kind of language talk and we moved on.

By 30 minutes in the the party, I asked her if I should call her mother to come get her, after she was throwing a temper tantrum when she didn't win Hot Pony (like hot potato, but with a stuffed pony) complete with crying and yelling.

By 45 minutes, every little girl at the party was rolling her eyes because of the way this little girl dominated the conversation, and made everything difficult, she didn't want to play the games we were playing ("this is stupid"). Didn't want to eat the food we ate ("This is gross")

Repeatedly my attention was on keeping this little girl in line, and not letting her get out of control. Frankly, by 90 minutes in the party, I was counting down the minutes until we could send her home, by the time she finally went home, I was beside myself that I MADE Kate invite her, because she is mean, and out of control, and I feel bad for saying this, but I wish she hadn't been there.

When her mother came, Kate was opening gifts. Mom said, "I'll wait in the car, come out when you are done." and walked out. Never asked how she did, or how it went, as I was prepared to say, "I'm not sure she is not ready for a drop off party yet."

I'm going to approach her at school today (we've been off on fall break for the last week) and tell her I'm sorry her daughter had such a hard time, and see if that opens a conversation, because I think Mom needs to know that she had a very hard time at the party.

Now comes the question - the kids want to have a Halloween open house/party, it will be a pot luck type party, and they each want to invite their whole class to come in costume. Except they don't want to invite this one little girl.

Honestly, how would you handle this? I'm going to ask a few parents to co- host it, but how would you deal with this one little girl? Kate says she would rather not have her ("She's a handful Mom") and frankly, I feel the same way - but it goes against what I think is fair. I've actually considered NOT having the party just for this reason!

Would you leave one child out of a party if the whole class was being invited?

Camp, Hope, and the Death of a Remarkable Man.

2008-09-30T06:03:00.000-07:00

We went to our camp, The Painted Turtle, earlier this month, I wish I could put into words the depth of what this weekend means to us, but I'm not sure it's possible. I've been trying to write a post about it for two weeks, but the words never seem adequate.

This is what I can tell you. The Painted Turtle, for us, is like finally feeling like we're at home. You see, for us, life is wonderful, and amazing and we are so so grateful for the IVIG that makes our life livable. The problem is, as much as we like to say that this is our normal, or that life is easier now (it is) or better now (it is) it's still not..... normal, or free. You see, chronic illness steals freedom and a sense of normalcy.

I'm grateful the kids have medicine that makes them better, and I'm so glad they go to school, and amusement parks and all the other fun things we do. However, our life not normal. It's not normal to worry incessantly about germs...It's not normal to have to get stuck with three needles every week to be able to do those things. It's not normal for a four year old to be able to get and IV without a crying, and without a parent present. It's not normal to know the difference between a t- cell and a B cell at 7. It's not normal for us to worry about doctors and hospitals. It's just....not.

The reality is, as much as I like to say we are on a great path, and life is...really good (and it is) the reality is, there are times it's not. There are things we have to do that very few others do. They do have a disease, and it does impact our daily life and how we can live it. The reality is, Charlie had trouble opening the door to the office at school the other morning because his arthritis is flaring up. The reality is, Tommy had IVIG last week, and he has a sinus infection, and needs antibiotics, and just generally feels crappy. The reality is Kate has had massive emotional issues trying to deal with being chronically ill and what that will mean to her long term. She hates that she has to do ANYTHING to feel better, she just wants to feel better without anything. Our life is, in SOME WAYS more difficult, less normal and different than other peoples lives.

For that, I am incredibly grateful for camp. I'm so glad that there is a place that kids with a primary immunodeficiency disease can go for even just a few days, and be...normal. A place where no one else asks why you take medicine. Where other kids rub your legs when you have joint pain, and stop playing because they get what it's like to be left out, or when parents "get it" when your child needs to rest before the next activity. A place where life long friendships are made, where you don't have to broach the "What's wrong with me" factor, because....they already know.

The Hole In The Wall Gang Camps, of which The Painted Turtle is one, provide something far beyond a week or weekend at camp, for families like ours, it provides hope, and even if just for a few days, a sense of being normal, a feeling of belonging that we don't always feel.

For parents like us, parents who worry about things like where the nearest hospital is, and if the doctors will even understand our disease if we need them, the Painted Turtle gives us hope, and freedom. With it's doctors and nurses blending in, looking like anyone else in the room, with scrubs no where in sight, with a medical clinic that looks more like a play room then a hospital, it feels, like camp.

This weekend, the founder of the Hole In The Wall Gang Camp, and co-founder of The Painted Turtle, Paul Newman, died of cancer. My husband and I sat at our dining room table and cried. Not because the loss of the actor, but because of the loss of the philanthropist who quietly changed the lives of so many. Without ever meeting our family, or hearing our story, Paul Newman has given us hope. He and those who worked so hard on these camps have given us a psychological home, a place to belong, to be safe, to lose our worries. He said he was given incredible luck, and that he wanted to give back to those who were not as lucky. He truly succeeded.

Godspeed Mr. Newman, Godspeed.

Crap. I'm old.

2008-09-16T06:14:00.000-07:00

Today is my birthday. I'm officially 34 years old. I feel like I'm 50 some days. Other days I wonder if I'm old enough to have children.

On another note - proof I'm raising good kids came yesterday. Charlie and Kate's classes went to the book fair. Charlie was worried Tommy would be left out - so he used 1/3 of his money to buy his little brother a firefighter book. When Kate heard this she said "Darn it, I should have thought of that. Charlie, I'm really proud of you for making Tommy feel so good!" Tommy thanked them both.

It's moments like this that I feel like we're doing something right. There are so many moments that make me wonder if we're getting it done....yesterday, this exchange was the best gift I could have ever gotten.

So Much To Catch Up On!

2008-09-15T05:52:00.000-07:00

So, the last month has been super busy. I need to catch y'all up

Charlie started 2nd grade. I'm thrilled that he was placed into a split class - a 1/2, with the same teacher he had last year. This for us is a best case scenario. Students in a split are picked very carefully - the kids have to be at or above grade level, and not be at all a behavior problem, and be an independent worker. This is very important because of the hard year Charlie had last year. His class was full of high highs, and low lows and more then that, he had some GREAT kids in his class but he also had a handful of very difficult, bully type kids. Kids who just didn't have that ability to think outside themselves - kids who thought it was funny to hurt others. Charlie was so bothered by this, and was on more then one occasion the target of it, so to have him in a class without that dynamic is terrific.

The biggest bummer for us was that Charlie got croup in the second full week of school, and has already missed 2 days (last year it was November before he missed a day). We're hoping that it will not be a rough sickness year.

Kate started 1st grade. My little social butterfly was a little bummed that many of her friends ended up in Charlie's class (including her best friend) however, she has just done a beautiful job of transitioning to her new class. Her teacher and Charlie's teacher do a lot together, so they will end up meeting in class frequently this year. I'm thrilled that Kate has been placed in the highest reading group, especially because I was so worried last year about her progress. Her teacher has such positive things to say about her, and her fluency in reading is just amazing!

Thomas started preschool and is doing very well. He has really matured and is loving his class. He goes to the same school as the other two kids, and is in school 5 days a week from 8 - 11:30, and we're thrilled with his progress. He really likes school and he really seems to be coming into his own.

In other cool news, our family was invited to Aamond, Idaho to visit a plasma collection center. Kate had been to one before, but Charlie, Brian and Tommy had not. It was phenomenal to see Charlie's reaction, the way he thanked the donors who give the plasma that make his medicine (lots of shaking of hands and hugs) and even cuter was to watch the kids "playing" plasma donor. They had such a great time interacting with the donors, and employees, they've been asking when they can go back.

Charlie plays donor:

With Matt, the regional manager

We can't forget Bella fat cat. She is.... well.... fat. Feisty.... spunky... and adorable.

Bad Blogging Karma....

2008-09-14T07:01:00.000-07:00

So, it's really bad blogging karma to not post for a month....however, I have a fairly good excuse..... this is how I spent the last 3 weeks.... http://www.bugsdaddy.blogspot.com/.

Yup, arm cast for severe tendonitis. It's always been my dream to be able to take a shower with a bag over my arm, and have to ask my 5 year old to tie my shoes for me. Flying to Chicago for a meeting with an arm cast was a blast too! I just love the extra attention they give you in security with that puppy on!

So, starting tomorrow, real blog updates again!

Chad's Champs, a Visit to Dodger Stadium!

2008-08-12T05:27:00.000-07:00

Isn't this just the classic little boy baseball picture? Tommy uses his glove as a hat....

Our family on the field at Dodger Stadium.

Last Saturday night, all three kids were invited to attend a Dodgers game as guests of pitcher Chad Billingsley as a part of the Chad's Champs community program. Chad, a 24 year old pitcher from Defiance, Ohio, has been visiting Mattel Children's Hospital at UCLA where we go for treatment for the kids primary immunodeficiency disease, and Chad invited kids from the hospital to attend the games.

Our kids were lucky enough to be invited to the first game as a part of this wonderful event! Not only did they ask us to attend the Dodgers game sitting in wonderful seats behind home plate, on the first level, but they also brought the kids ONTO the field, to meet Chad and get autographs, which was a huge thing for our kids. It was the first Dodger game ever for Tommy and Kate, and Charlie's 3rd game, but it was more than that... it was the timing that was so perfect...

the view from our seats

Chad and the kids....

First, let's just start with this, the game came at the perfect time.

Charlie and Kate just started SCIG, the new way they are doing their infusions. Now, instead of getting an IV in their arms they are getting 3 needles in their belly and legs and getting the medicine subcutaneously.

This has been a huge leap of faith for our kids, Kate was the first one who wanted to try it, because she didn't want to go to clinic anymore (it was interrupting her social life - I'm not kidding, that's what she told us "I keep missing Daisy Scouts and play dates.") and she convinced Charlie to try it too.

For the past 3 years, he's been terrified of this prospect. Getting an IV in his arm, no big deal, but a needle in the leg? In your belly? Way too difficult to even consider in his mind. The reality is, his fear was really unfounded, it does not hurt as much, and while he will do it weekly, it will allow him to not have to go get hooked up at UCLA every other week.

This Dodgers game came just three days after his first SCIG treatment.

The treatment he cried on the way to.

The one he wanted to back out of.

The one he begged not to have to do, after agreeing to try it.

The one he didn't cry at when it actually came time to put three needles in his leg and belly, the one he said was "not so bad" the one he feels like the biggest, bravest boy for doing with not a single tear.

The one he told Chad all about, showing him where he gets his needle now.

Telling Chad.....

....and then showing him....

At the start of the game, Charlie was able to run out on the field with the Dodgers and got an autographed ball from James Loney.

Not only did they do all that....they watched Manny hit his first homerun as a Dodger, they did the wave, they ate popcorn and Dodger Dogs, and made it through the entire game... all 9 innings....The Dodgers and Chad have a five new fans for life.

My Favorite Summer Yet...

2008-08-09T07:03:00.000-07:00

This had to have been my favorite summer with my kids yet..... I mean, honestly, it was by far, the best time we've ever had together.

It wasn't just that we went to Legoland 7 times,

It wasn't seeing all the dolphins and other sea animals at Sea World (although if you get the chance the Sea Lions tonight show is hysterical, and the warm up act is out of this world)

It wasn't that Charlie learned to swim,

or how proud and happy he was of himself.....

and it wasn't that Kate learned to swim....

or how happy and proud she was....

or that Thomas learned to not sink (I wouldn't say he's totally a swimmer yet)....

or how darn silly he is....

It's this.... the time we all spent together that made this the best summer ever.

On another front school starts in 5 days.... only four days of vacation left!

Home!!!

2008-08-06T11:55:00.000-07:00

We're home! Had a great vacation - I'm currently downloading 443 pictures - but I promise not to torture you will all of them.... maybe just 100 or so :)

We had a great time, learned to swim, played too much, enjoyed ourselves, and best of all, unplugged and just had some amazing family time!

Hope all is well with everyone out there... be back later today for pictures and more....

OMG! I CAN GET ONLINE!

2008-07-22T12:24:00.000-07:00

Just have a few minutes, and wanted to check in!

Silly girl!

....and the silliest boy....

and the reader....

who like his mother has taken to reading and walking...

Want to share a bit of our vacation with you!

Is it horrible that I feel like I should get on my knees and praise the Internet right now? Having been without it since July 2 - makes this access all the sweeter. Of course, I'm at clinic with Kate right now, getting her new medicine (a new method - same medicine, I'll explain later) and they have Internet, which is the only reason I can post now.

The truth of the matter is, we've had a great time in San Diego. I mean, a GREAT time! We've had such a wonderful time, we're extending it for a few more weeks. We'll be back around the first weekend in August. Just before school starts...

In the meantime, let me share some pictures

This is how we've spent most of our vacation, headed to the pool to swim!

We've ridden some rides....

visited some museums....

seen some of natures beauty....

We've watched leaves be swept down stream (a leaf and some water provide 2 solid hours of free amusement by the way).

We've watched koi fish in the Friendship Garden....

We've been to the Fair and eaten HUGE hot dogs (yes, he finished all but 1 bite of this!)

The highlight for me has been feeding the dolphins....

We had silhouettes done (I've always wanted to do this).

We saw a Monster Truck Show, which is, by the way, totally outside my comfort zone.....

but it motorcycles doing tricks....

but...alas.... it was WAY too loud for our little ears...

The weather has been beautiful.... mid 70's.... and well, a mile from the beach is never a bad thing!

Now, tell me, how is summer treating YOU???

3 Weeks Without A Computer... WILL I SURVIVE?

2008-07-02T08:23:00.000-07:00

I am going to be without direct internet access for the next three weeks - while the kids and I vacation (Brian has to work). I might stop into a Starbucks or a Panera for a quick update... but I plan on taking the next three weeks to explore San Diego, and teach my kids to swim (lots of pictures heading your way after this trip).

While I can not get online... I will be able to recieve comments left here via my blackberry (which I plan to NOT have attached to my hip)!

:) Have a wonderful 4th of July everyone... See you around the 21st!

Dayna

This Is Going To Be A Hard Day

2008-06-30T06:10:00.000-07:00

It's a busy week around here. We have clinic 3 days, Tommy today, Kate tomorrow, and Charlie on Wednesday - don't ask why... it's annoying, but it's just the way it worked out.

But that's not why it's going to be a hard day.

Last night, I got word that 2 EMS helicopters crashed midair in Phoenix yesterday. IN. BROAD. DAYLIGHT. 6 killed, 1 critical. For those that have followed this blog, you know we lost our good friend Jerry in a EMS Helicopter crash just about 18 months ago now. His daughter M. is in the picture below with all the kids at Kate's kindergarten program. It always feels like a sucker punch when another helicopter crashes. Uncle Steven still flies, as do many of our friends, as Brian used to be in the industry, and it makes us both physically ill to think about loosing another friend.

But that's not why it's going to be a hard day.

Today is the end of an era for our family. The end of the Jennifer Era. It's going to be a hard day.

Today, Tommy has clinic, and he'll go in and get his IV started by one of the best nurses at UCLA, Jennifer, but it will be the last time that Jennifer starts his IV as our clinic nurse. Today, June 30th 2008 is Jennifer's last day as our IVIG nurse.

Jennifer has been our nurse since our very first day at clinic with Charlie on February 2, 2004. It feels like a lifetime ago, but back then, we were scared parents of a 3 year old, a 1 year old and I was 36 weeks pregnant. The first two had been diagnosed with a Primary Immunodeficiency and the next child was on the way. On Charlie's first clinic visit, it took four sticks to get his IV started, he was so sick and so scared, and nothing can prepare a parent to go through that, knowing it's going to continue for a very long time.

I can remember as I stood outside the door, slightly crying, and very overwhelmed, Jennifer, whom I had JUST met, stood next too me, rubbed my shoulder and said "It's going to get easier."

I appreciated her words more then I can ever tell you... of course, I also thought she was crazy. How could this get easier? This would not get easier, it was only going to get harder, and be more overwhelming, and sticking my child with a needle every three weeks was NEVER going to be easy.

Of course, it got easier. Just like Jennifer said.

She was there for Kate's first infusion less than six months later and again for Tommy's less than a year after Charlie's first, and always I clung to her words: "It's going to get easier"

Since then, she, and Adina, our child life specialist, have been rocks in our otherwise sandy lives. Jennifer has always been there. She's been there at every hospitalization, even when I called her at 11 at night, when a PICC line infiltrated, and I was scared, and 3 year old Kate was panic stricken at the thought of another needle stick. She has been at nearly every clinic visit loving on the kids and making them want to come. She was there when we tried to transition to home care, she flew to Nevada when we lived there, and were going to try SCIG with Tommy at home, and were scared.

(who else could get a kid to smile like this getting stuck?)

She has been the kids biggest fan, loving them while she sticks them, encouraging them, and helping them, and trying as hard as she can to "make it not so bad." They love her. They bring her flowers, and candy, and they watch Star Wars to try to manipulate her into staying in the room with them. She the person that "hooked" Charlie on Star Wars, and she's given Kate the confidence to be a girly girl, and she's cheered Tommy on as he learned to crawl, then walk, and then talk. These kids have grown up with Jen, they've always know they can count on her, they've know that she'll be there. She's been the go-to girl for years, the liaison between doctors, the advocate, the nurse who knew more, learned more, and just was more in every way.

She was a part of every party, of making every clinic day special, of encouraging that patients to become more then passive observers, but rather active participants. She helped us plan events and we had food days, and birthday parties and really some where over time she became "THE" Jennifer. Everyone knows her. Everyone knows the magic she brings in her bag of tricks.

She's taken them to the museum, and been at every single Kids Day and Painted Turtle Camp session, she's there, cheering them on, being less of a nurse, and more of a friend, and that's what they needed to get through the days when she has to be more of a nurse and less of a friend.

She has become an incredible advocate for the Primary Immunodeficiency Community - attending educational sessions, and writing for a magazine giving a nurses perspective on Immune Globulin therapy and topics that our community needed education on.

We've been through a lot together; A great manager of our clinic who left after many years, and two really crappy managers, the death of our friend that knocked us for a loop, she was there when Tommy was diagnosed, and cheered us on as we fought to learn to deal with three sick kids, she was there when we dealt with a boss that did not understand the kids health issues, we were there when she started dating "documentary guy" and we saw the twinkle in her eye that she tried to deny. This year, we were there she married documentary guy, Dan , and now, their expecting their first little baby.

Now, she's leaving our clinic, and moving to the Palliative Care Team, she's going to help families and children deal with the childhood end of life issues. Because that's just the kind of person she is. Our loss will be the gain of children facing death because right now, she can make a difference there, and those kids might just need her a little more than us. It's a great move for Jen, a much better use of her NP license. She's been waiting to go, waiting till the kids were older, established, waiting until we didn't need her "as much" as before.

Today, as we go into clinic one last time with flowers in our hands, and love in our hearts for a nurse who has become a piece of our family, we'll do so with the full confidence that she may not be our clinic nurse tomorrow, but she'll always be our friend.

Yes, today is going to be a hard day

9 things I Need To Tell You

2008-06-27T08:34:00.000-07:00

Since I have not blogged in weeks, I thought I'd catch you up....

1. Tommy finished a year of preschool back in the beginning of the month... this was the cute little outfit he wore to the ending ceremony. He has 1 more year before kinder... and let me just tell you, this little guy is growing by leaps and bounds every day.

2. I love the way my kids support each other. I love this hug and the way Tommy is smashed in the middle. Both Kate and Charlie left their class to attend Tommy's program!

3. Kate was promoted from Kinder to first grade. It makes me both proud and sad to know this. She is reading in a big way, and is so ready... but I'm not sure I'm ready! That's her, with her teacher.

Again, all the kids (including M.) attended her ceremony.

4. Uncle Steven also came. It kills me how much Kate loves him!

5. This picture touches my heart, it's Steven, and Tommy holding his superman ring.... notice the bracelet? It's in memory of Air 2 following their crash. I don't know why, but this just hits my heart!

6. Kate bridged to Brownies...see the little girl with us? She goes to our school, I'm not going to use her name, however, her Dad makes the kids medicine. How cool is that? She pinned Kate's brownie pin on her (all the girls had an older girl to do it).

7. We went swimming on our last day of school... I'm sorry but this picture has to be shown... it's hysterical... how cute can one kid be?

8. This one, is fearless, she'll jump from anything into any body of water. Some fear of water is natural... this one does not possess that trait.

9. This is my husband, Brian. He rocks. By he rocks I mean, he had the kids alone for 10 days, and did everything, including driving 4 hours to pick Charlie up from Grandma and Grandpa's house. I came home, the laundry was done, the house was clean and the kids were fed and clean. Am I the luckiest person in the world or what?

HOME!!!

2008-06-25T21:31:00.000-07:00

Hey everyone! Sorry for the delay! I was traveling around thanking the donors who give our kids life! I have SO much to update... in the meantime - check out this awesome news story from Stevens Point Wisconsin!

http://www.waow.com/global/story.asp?s=8554037 If you look close - there is a video too!

:) I'll type again tomorrow!

As for now, I'm going to spend the evening with my kiddos!!!!

(My friend Lisa is sitting here and said no more !!!! exclamation points! I'm obviously very! tired! )

Skip Your ReRuns, and Watch This

2008-06-11T05:45:00.000-07:00

Most of us have heard of Randy Pausch. He's the Computer Science Professor dying of pancreatic cancer who gave a speech at Carnegie Mellon University called "The Last Lecture." He's been all over the news, he's been on Oprah, he's written a book. I had heard of him, and caught a few news stories, but had never taken it any further.

Yesterday, as Charlie and I were coming home from the doctor's office (because he has a rock stuck in his ear - yes, you read that right - a rock, in the ear) Brian told me he had watched him on Oprah. I didn't ask why he was watching Oprah (perhaps I should?) but I was taken aback when Brian told me what this man had to say had made him think, and then made him cry.

So last night as Brian went to coffee with a friend I pulled up the actual lecture on You Tube, intending just to watch a few minutes, I found myself watching it an hour later, it was so worth it.

I want to pass along this link to you. What great lessons can be found in this dying man's words, and by the way, if you think he's a sad, depressed dying man, think again, he's full of life, the picture of health and jokes and laughs through the entire thing.

Take an hour this week and hear the wonderful lessons this man has to share Randy Pausch The Last Lecture.

To TV or Not To TV, That is the Question

2008-06-09T06:46:00.000-07:00

I'm not a TV person. In fact, I have exactly 2 shows I like enough to watch - Jericho, which is no longer being filmed, and Criminal Minds, which I find fascinating because I used to just love reading about FBI profilers. I used to love TV, in fact 10 years ago, I could have named 10 shows I watched regularly. Now, I don't think I watch anything more often then "if I happen to catch it."

In fact, if it were up to me, I'd be totally content to cut the cable, and did at one point in time for nearly 2 years. Brian requires the basic 13 so he can catch the news, but other then that, we had nada.

That being the case, I'm pretty particular about what the kids watch as well. PBS kids is fine, some Disney is fine, very little Nickelodeon is fine. I hate Sponge Bob Square Pants, I let the kids watch it for a bit and they picked up some pretty rude phrases I won't let them utter. The kids watched Ben 10 exactly one weekend and it took months to reprogram Thomas who was convinced he was Ben 10.

I do buy them a tremendous amount of DVD's - especially educational ones. We have the 6 DVD set of Popular Mechanics For Kids which my kids LOVE, we have most of the Scholastic video set, add to it all the Magic School Bus and the countless other educational DVD's. I'm not a total meanie about this - they also have nearly every Disney DVD released in the past 7 years, in fact, our DVD collection is literally in the 200's. Up until three weeks ago during the school week, my kids were only allowed to watch educational TV, and are allowed no Video Games Sunday at 5pm through Friday at the close of school.

All that being said - it might shock someone to know that Charlie has a TV in his room, along with an XBOX. Shocking to some, I know. That TV is our rotating TV - whoever happens to be sick at the time gets it in their room. I don't want them infecting the entire house every time they get sick, and since he was sick last, in his room it has stayed. However, he has to ask for permission to turn it on, or risk loosing it.

Three weeks ago, we read The Berenstain Bears and Too Much TV, the kids decided, on their own, that they watch too much TV and decided to shut the TV off for the week. Brian and I thought it was pretty funny because, well, they watch next to no TV in comparrison with 99% of their peers.

I gotta be honest. Best week of my life. Hands down. The kids played more, read more, talked more, were outside more. They sat and colored, the laughed and told jokes. Frankly, we really enjoyed the entire week with the kids. Even Brian, who doesn't really buy into my TV issues, thought the week was SO much calmer, and easier.

We enjoyed it so much, we're considering making it a new thing in the house. No more TV. An occasional movie here or there - but no more daily TV.

I'd love to get some feedback on this one...

Could you do this? Would you? When I did it before, I still had PBS for the kids, I'm thinking cold turkey here.

Do you think TV has an impact on kids? In what way would it be negative to take away a kids TV? In your opinion, how would it be positive?

I might be an Ebay Addict.

2008-06-08T05:30:00.000-07:00

And it's all Hallie's fault.

I never ever used to go on Ebay. Ever. Then Hallie started gushing about it during a phone call, and I thought, what the heck, I should see what all the fuss is about. My friend Lisa is on their all the time too - and heck, it can't be that bad.

Suddenly, I'm checking it all the time. Hanna Andersson dresses. Mini Boden (which, by the way, I had never even heard of until Hallie told me how cute Kimmy has her kids looking in Mini Boden, which I then checked out to see what all the fuss was about). Yesterday, I got Kate a Gymboree Dress for $4 for Forth of July, and it's adorable.

Then, I realized, you can get BOOKS on ebay. Holy cow. Books! I'm a book addict, especially children's books. Charlie is currently obsessed with Berenstein Bears, which is as good of a series as any - and I just bought 8 of them for 9 dollars. Can't beat that - they are 3.99 in the store.

So, in my never ending quest to become further obsessed - tell me what you like on ebay - so Brian can hate all of you equally. :)

Crazy Hair Day

2008-06-06T06:23:00.000-07:00

Twice a year, we have crazy hair day at school. I think the kind of hair the kids pick says a lot about their personalities.

Charlie goes with spiky with a little color, he goes spikey about 50% of the time, so he's not too far outside his comfort zone with this one.

Kate, ever the fashion diva, wanted her hair looking nice, but with a color that matched the dress, she has bright orange flowers on the dress.

Thomas wanted a multicolored mohawk. Let's just add for good measure, after getting it red, he then asked if it could have orange too. Me thinks we have a mini rebel on our hands.

After school we went to Disneyland to try a new ride out (Toy Story Mania, wow does it ever rock - I highly recommend it and think we'll go back again soon) . The older two went home, showered, and changed. Not Thomas, he wanted to go, hawk and all.

Even Pluto noticed and wanted in on the action!

A weekend... In pictures

2008-06-05T09:08:00.000-07:00

Poor Poor Dog

2008-06-03T07:15:00.000-07:00

Some kids dress their dolls.

Not Kate.

She dresses the dog.

Sorry I've been MIA. I'm back now. I'll post more tomorrow.

My Big Boy

2008-05-23T06:27:00.000-07:00

Tommy started IVIG when he was 11 months old. It was devastating for me. I wanted him to be older, I wanted him to be walking, and most of all, I wanted to be able to explain it to him, and at 11 months he was just too young. That diaper on his hand? It covers his IV, so he didn't pull it out himself.

Of course, I knew it was practically a wonder drug, and it made his life SO much more manageable and easy. It was just so hard that he was so young when he started getting an IV every three weeks.

Then, he started walking, and it got much much harder. I can remember once our friend Jerry came to clinic before he died, and while he was there, he offered to take Tommy for a walk seeing how tired and worn out Brian and I were. All the sudden, Tommy heard go for a walk, and took off running. The vision of Jerry lifting up his IV pole and running after Tommy, while everyone else laughed will forever be stuck in my head.

Every once in awhile, he'd sleep.

But most of the time, he was standing, jumping, playing....

Tommy was difficult at IVIG for years. As in from 18 months to 4 years old it was hard. He didn't want to sit still, he didn't want to watch tv, he needed constant one on one attention.

Sure, he was cute. And charming. But he was still difficult. It often felt like you were wrestling with an angry alligator, or frustrated monkey who wanted to climb, not sit. I have almost no pictures from that time period, because frankly, I was too busy chasing him.

Suddenly, IVIG with Tommy is easy (cue: angels singing). Suddenly, he's big, it started with him watching TV and not needing 1:1 attention every single second.

Then, this week, when he got IVIG, he did what my other two have done. He declared his independence.

"I don't need you mama."

Then, he sat by himself to get his IV. For the first time ever. He did not cry. He did not need me. He just did it, like a big boy. All the sudden I miss my little baby.

He didn't need me for medicine time.

He let the doctor examine him without me needing to interrupt 27 times to tell him to let the doctor do his job.

Oh, and while he was there, he declared he's marrying Adina our child life specialist, and he got a heart on his coban.

How do they grow up so quickly?

Duke

2008-05-16T05:04:00.000-07:00

Look into those eyes. How can you not just love them!

It's been awhile since I've posted a picture of Duke, our new-ish dog. It turns out, Duke is a great dog. Loves the kids, patient, good listener. He's a little annoyed by the cat who hisses and growls at him every time he walks by, he doesn't seem to get this, all he wants to do is play with her!

Duke turns out to be a dog that will wait at the front door, even if it's open (most the time), he's the kind of dog that walks around at night and checks on each of the kids while they sleep.
he cries for the kids when they go to school, looking for them all over the place. He sits, depressed, and waits for them to return

Of course, all that being said, he also sneaks up on the couch as often as possible, and I frequently find him in bed with the kids. He loves to eat their food, and thinks kitty food is better then dog food - which really shouldn't be a problem because, well, the cat eats his food. Finally, I think Duke has learned I'm a sucker for those cute little ears which wrinkle and fall over when he lays on his side.

Mother's Day Flowers

2008-05-14T04:29:00.000-07:00

I got flowers (and gifts) for mothers day - check this beauty out...

Tulips are my favorite, and Brian and the kids gave them to me because they are thoughtful and wonderful.

Just one look inside, and I'm in love with this flower. How can I not be?

Wow, for such a beautiful flower, the stem is all jacked up. What's wrong with this leaf? It....almost...looks like something took a bite out of it. Wow, what in creation would do that? Do we have bugs? Maybe some kind of hungry Caterpillar?

Nope, I think I find this leaf chomper... I'm convicnced my cat has something wrong with her. She eats EVERYTHING. Plastic, leaves, pizza. Honestly, at this point, we call her Bella Fat Cat, because pretty soon, I expect her to explode. It's not that we're not feeding her... she eats twice a day for goodness sake.

What is wrong with this cat?

Being Mom

2008-05-09T15:26:00.000-07:00

I got this card from Tommy for Mother's day where his preschool asked him all sorts of questions about me, and he had to fill in the blanks (or you know, the teacher wrote it out for him, since he's 4) His answers were sweet and hysterical at the same time. I decided to ask the other two kids the same questions to see what their responses would be.

Of course, now that I've done it, my confidence is shot. Excuse me while I go exercise, use wrinkle cream, perfume and cook something healthy :)

Happy Mother's Day Everyone!

From Charlie:

My mom's name is Dayna

My mom is 26 years old

My mom is very tall

My mom weighs very big pounds

My mom likes to cook cookies

My mom's favorite color is pink

My mom smells like flowers

My mom likes to read me a story

My favorite thing to do with my mom is read a story

My mom is as pretty as a tulip

I love my Mom because she is the best mom ever

From Kate:

My moms name is Dayna

My mom is 55 years old

My mom is 4 inches tall

My mom weighs 35 pounds

My mom likes to cook hot dogs

My mom's favorite color is pink

My mom smells like roses

My mom likes to sit down with me and read a book

My favorite thing to do with my mom is going out to Olive Garden

My mom is as pretty as a horse

I love my mom because she is a nice mom.

From Tommy:

My mom's name is MAMA.

My mom is 4 years old.

My mom is 10 inches tall.

My mom weighs 7 pounds.

My Mom likes to cook cereal.

My mom's favorite color is blue.

My mom smells like hot dogs.

My Mom likes to give me a balloon.

My favorite things to do with my mom is play with fire trucks.

My mom is as pretty as a pretty dress.

I love my mom because we went fishing.

Just as a side note, let me add - I have one pink item that I wear, blue is actually my favorite color - and the balloon thing - I don't allow balloons in my house because of the whole choking thing, and um, I am not 4, but nor am I 55. I'm 33 years young. Oh, and as for the smelling like hot dogs... eu de Oscar Meyer?

What I Miss

2008-05-05T05:35:00.000-07:00

I love me this little boy. He's just so boy, he loves all things fire, and I so can't stop loving on him when he's trying to protect me from the flames and smoke when I boil water (any flame in his mind should be put out) and steam? Full blown smoke to him! I love the way his little itty bitty baby voice says "I love you mama" and the way that when he kisses you, he puts one hand behind your head and pulls you to him, the way he gets frustrated and jumps up and down, the way he says "Charlie do-ed it" instead of "Charlie did it."

Then there is his sister, who I love in a totally different, yet just as big way. She's the one that intently studies animals, the one whose eyelashes draw me into her eyes every time I look at her. The way those cute little curls frame her big beautiful cheeks.... I love the way she gets language how she wants to use the big words and the adult phrases like when she did something wrong, and Brian called her on it, and she told him "That's the pot calling the kettle black" I love her thirst to be around others, how much she needs social interaction. I love the way she takes Tommy under her wing, and laid with him every night last summer and taught him his ABC's and 123's because she wanted to.

My first born. I love that he's lost his front tooth, and every time he smiles, I realize, he's growing up. I love the way he wants to learn every part of history, the way he looks at everything with a critical eye, and wants to change the world. I love that he still wants to be cuddled all the time, and the way he loves to bunk in with his brother or sister for the night, how polite he is, how he talks to people about his disease, and already self advocates. More than anything, I love what a great big brother he is, how much he wants his brother and sister to turn out just right.

It's so hard to be away (I'm in Chicago right now with Brian), I'm coming home tonight, with a chest full of new tools, and many things to consider.

The Two Faces of Bella

2008-05-01T05:51:00.000-07:00

By day, Bella is a mild mannered kitty, content to lay in front of Kate's door to prevent Duke from coming in.

By night time, she's climbing the walls. Literally.

All that jumping can make a girl tired!

Back to working on actually climbing to the ceiling, apparently once every four years they have the kitty olympics, and she's trying out for wall climbing... either that, or she's practing her moves for the major motion picture she's trying out for... KUNG FU KITTY (and if you heard the noises she makes at Duke, you'd understand, this might be more likely).

Edited to add:

This comment from Hallie is too good to not post...

Wonderful World of Weiners said...
Every consider that one (if not all of you) is DRIVING HER UP THE WALL? Just sayin"...Hallie :)

In other news ,Duke continues to lay around and be cute...

D/C That PICC Line!

2008-04-30T05:40:00.000-07:00

See that bandage over there on the left arm? It's been there for 21 days, covering her PICC line. If you asked her, a PICC line is a total pain in the rear end. Let me give you her PICC Line top 10 list:

10 Things You Can Not Do With A PICC Line

10. Jump on a trampoline
9. Skate Outside
8. Have play dates with friends
7. Go very far from home without a medicine bag
6. Play In Dirt
5. Go to Recess
4. Play in Sand
3. See your entire arm
2. Ride your bike
1. Take a bath without Mom holding your hand in the air.

First we tried to draw blood from the line, we needed a CBC to see where her levels are after all this medicine, the problem was, there seemed to be a little clot making it so we couldn't get any blood back from the line.... however,

it was time for the CT scan, to see if her sinuses had actually cleared, this would determine if the line got pulled out or not. I asked Adina, our Child Life Specialist to do it with her this time. Frankly, having three PI children, I have been in the room for at least 20 CT scans, and I'm afraid one of these days I'm going to start glowing.

Look at that big machine and that little bitty body, oh how I hate CT scans.

Still trying to get blood! Now were putting in a special medicine to eat the clot on the end of the line so that we can get a CBC.

YAHOO! Blood back! This means we don't have to get an extra poke. She could not imagine anything worse then having to get a poke while having a PICC line.

We're starting to get worried about the PICC line, and if it's going to come out - we don't want this thing in for one extra day. The first news we got was that it was "almost gone" not "totally gone" and I started to prepare her that it was possible we might not get it out if the sinuses were not totally clear.

Then came the news - PULL THE LINE! She's actually so excited she started to get teary!

Everything seemed better by this point, and she was even smiling watching TV!

So we decided to torture the immunologist and make him pose for pictures. ;)

By the time we were on our way out, we were willingly stopping to get pictures with our friend Tiffany - she's our procedures coordinator - and she makes all the front line stuff run smooth - we've been with her since our very first time at clinic 4+ years ago - she is literally the first face I remember encountering on our very first day!

I didn't take any pictures of it, but she actually pulled out her own line - she wanted to take the dressing off herself, and when it came time to yank the line, she just kept pulling! The poor intern practically fell all over herself trying to get to the line!

It's a happy day in this house... well, except for me.... I get to return to the hospital and have clinic with Char today!

10 Things I Have To Tell You

2008-04-27T07:42:00.000-07:00

Tulips at the Base of the Eiffel Tower...

I've gotta just do an all inclusive post - or I'm never going to get back to blogging. So sit back, and enjoy...

0. I'm done using initials and nicknames. The thing is... I have a link here to an article that clearly states our names - so it wouldn't be all that hard to figure out.

.5 I can't stop thinking about Belgium, about the fact that I did it, I flew international, and survived, I explored a city, in a foreign country, by myself. I gotta admit, I'm pretty flippin proud of myself, not to mention, I loved the people there. Especially the people at the plant.... I hope I get to go back some day.

In the Grand Place, Brussels, Belgium.

1. I think I'm the only person who doesn't love Paris. Okay, that's not true, I loved meeting my friend Kez in Paris, but I was shocked at how different I thought it was from what I imagined. It was much dirtier and much more big city than I expected. I don't know what I was thinking, of course it's a big city - but I mean, really, I expected for it to be... you know.... cleaner. The metro in particular. The Eiffel Tower however, was pretty cool.

2. My knee still hurts, and I'm went to the doctor yesterday, he said it's a deep bruise he thinks, however, he wants me to see an ortho in a week if it still hurts.. As for how I hurt it - well, it's shockingly embarrassing, and still deserves it's own post - needless to say, I fell, in front of the train station, while in heels, running..and when I finally tell you the story, you're going to think I'm the biggest dork in town.

3. The recovery from the trip was much easier than I expected with a little help from my good friend, Ambien, the first night in the middle of the night, I woke up and couldn't get back to sleep, a little ambien and 8 more hours of sleep encouraged a quick recovery!

4. Kate had her Kindergarten home tour, all the kids ride the bus to their house and show off their house as a part of their community lessons. The kids put a sign in their front yard to show off their house.. Last year, Charlie had a launch pad filled with rockets and space shuttles. This year, Kate had her own horse ranch!

5 Charlie had his school play about saving the earth - which he takes very seriously, and points out to me our deficits daily, I'm pretty convinced he's going to be a tree hugger :) His play was adorable, and I realized, Charlie really projects well, and has no stage fright. Last year, he had no desire to sing a song or do hand movements - this year, he's totally into it!

6. Tommy is attending school now 5 days a week, it's been so so so good for him - he just is blossoming in ways I couldn't imagine - yesterday he sang us a song "up, down, left than right" with the movements to show the correct directions! He's talking like a mad man, and I'm just so impressed with him. I am worried he's a little sinus-y, like his sister, but we're going to wait it out and see how he does, as he just got IVIG

7. Charlie and I went to New York on Thursday and Friday to attend The Spring Ahead Gala sponsored by the JeffreyModellFoundation and raised 2 million dollars for the PI community, an Charlie was an invited guest signing books and just generally being cute. Fred and Vicki Modell were amazing, sweet people and I was very impressed with them, the organization and the amazing way in which their friends, colleagues and associates gave so much money to honor their son Jeffrey who lost his battle with PI at 15.

Fred and Vicki with Charlie and E - a 13 year old girl who also wrote a book about PI!

8. The two things Charlie really wanted to see -

The Statue of Liberty:

Dum Dum from the Night At The Museum at the Natural History Museum (which is a story in itself, because this exhibit was closed, and we managed to get them to open it so he could see it, since we were only there for 1 day)

9. The two best things about his trip, according to Charlie:

Hanging out with David again. David is a good friend of ours, and works for the company that makes our medicine - Charlie calls David his Ig Guy - and Charlie is pretty attached to him. I happen to think David is one of the coolest guys around.

Meeting a military man in Grand Central Station - whom he told all about his Airman Pen Pal CJ.

10. I think it's possible Kate might be a class clown - check this out and let me know what you think...

(Speaking of Kate, follow up sinus CT tomorrow - send some positive thoughts our way - we need this to be cleared - her little tummy is way done with these antibiotics).

I really missed you guys!

2008-04-21T05:02:00.000-07:00

I can't begin to tell you how excited I am to be home! The kids, the husband, the kitty, the dog! My blogging friends! Of course, I say that, and I'm leaving again on Wednesday for New York with C. for 2 days - but at least I get to be home for a few days!

It is a good week to be home. K is Super Star in the kindergarten, and we made her poster, and counted her guessing jar items (M & M's) and filled out her profile! C has a play at school this week, and T is just about the cutest kid talking up a storm - I needed me a little T loving.

As for Brian, wow, did he do a great job! The house was clean, laundry was done, and homework was caught up! He did especially well under the circumstances, because K had to be infused 5 times a day the whole time I was gone!

I decided instead of overwhelming you with pictures of Belgium, I'd try to show you one or two a day - this first one is of the Atomium, just like the Eiffel Tower, it was build for the Worlds Fair when it was held in Brussels in 58. It rises 335feet in the air, and is just awe inspiring. To give you an idea of how large it is - look at the picture below - a picture taken from another part of the city to show how it stands out above all the rest!

Like the Eiffel tower, you can go to the top, there is a restaurant and an observation deck (I did not do this)

I got home Saturday, back to the house at about 4, after our little adventure with a broken down car on the side of the road (see Brian's Blog ) I ended up grabbing a rental at the airport, and picking Brian and the kids up where the van had broken down. This is really frustrating, this is the second time it has broken down with what we think is the exact same problem.

I have a whole different story to tell you about the nasty fall I took in Paris, but frankly, my stupidity deserves it's own post.

When I got home, I stayed up until 7 and then I slept 15 hours and then was right back on track! The jet lag has not been nearly as bad as I expected!

Yesterday, Brian and the kids and I took a drive - we went out to the California Poppy Reserve. The kids really loved it, especially taking the short hike to see the view from different angles. It was really nice to just get out, and be with them!

Do I have the cutest kid, or what?

A view from the top....all the orange you see is Poppies.

So - everyone - check in - tell me what's going on with you! I need to start checking my blogs, but first, I'm going to get the kids ready for school since Brian did that alone all last week!

Belgium

2008-04-14T23:25:00.000-07:00

I can not even begin to tell you how beautiful Belgium is. I got here super tired, but have had a good nights rest and am geting ready to go explore the city.

If you want to see a few pictures (and Hallie - there is one for you in particular) go to Brian's Blog. I emailed him the pictures, and he'll put them on his blog, because I can not upload them to blogger here at the hotel for some reason!

CJ - a note to you - YOU CAN DO IT!

:) Dayna

The Network Expands!

2008-04-13T07:28:00.001-07:00

Do you know how the more you ask a man to do something - the more they resist? You know, like -

Me: "Husband, you should blog for me today"

Brian "Not"

Me: "Come on, I'd love it, and the readers would love it, besides, then the kids would have it later in life."

Brian "I am not a writer, and I'm not a blogger"

Finally I gave up.

You guessed it.

Guess who started his own blog?

Yup, My husband, Brian, has decided to blog, he's going to write about what it's been like to go from Full Time Flight Paramedic, and Firefighter to a part time firefighter and mostly full time Daddy. When I travel, Daddy stays at home with the kids, and I gotta admit, he's darn good at it. In fact, better then I am at the day to day stuff .

I wanted him to join here - and just blog with me, but he said no, because I kept calling it "my blog." Oops! Anyway, Mr. Bug - Brian, will be blogging at Bugs Daddy (Yes, he did it all by himself - how much does he ROCK!) I'm sure he'd love a nice warm welcome, and lots of comments to encourage him to keep writing.

I'm off to Belgium in a few hours - but for the next 14 hours while I'm gone - I'd love nothing more then for you to welcome Brian and another very new blogger, who would LOVE a little encouragement -

1. CJ - Red Bull And Romance He's a brand new blogger on his first ever post - give this Airman a Big ol' love!

CJ is C's penpal, and oh my goodness - this young man has got it together!

Wish me luck on my 14 hour flight (holy cow - 14 hours, I can do this - right?) By the way - a comment or two here would be great too - because I'm feeling kind of worried - and the comments come to my cell phone!

Let The Crazy Begin

2008-04-12T06:14:00.000-07:00

It's the day before I leave for Europe.

I've changed my flight to Belgium, because of a mix up, however, when it was changed I gained someone accompaning me through Frankfurt, where I will make my connection. Which, is a relief to me!

Have I mentioned I have NEVER traveled internationally before? I'm scared out of my mind! What if I can't figure out what I am supposed to do? I'm not even sure I know how to dial a telephone in a foreign country! Oh no! What if I can't get on line? How will I check my blogs???

Anyone have good travel tips for me? They would be so welcomed. Anyone happen to have a cousin in Belgium? LOL. I'm so scared, and so excited.

If you read here often, you know I often deflect and can't seem to get anything done just before I have to fly. Today, I am vowing not to deflect. I'm going to get done what I need to do.... you know, that's why I'm up blogging instead of getting ready for the plane ride.

So - I want to add a side thought here. We're considering changing Duke's name.... to Snoopy.

Any day I'm expecting to find him sleeping up there. Since we find him up there everytime he's let out to potty.

See that wall on the left hand side? Last week, he used the kids playhouse to jump onto the wall and go visit the neighbors dog. We've had to move the kids playhouse away from the wall so he can't just walk across.

Just because I don't want you to think we don't still love Miss Bella - who is the cutest cat ever.

K continues to do well, it's been hard for her to not go out and jump on the trampoline, and the meds are messing with her tummy. The doctor called yesterday and decided to move the PO meds back to IV - so now she'll be infusing 5 times a day. Poor Brian, the week I'm gone is going to so suck for him - I'm really hoping I can convince him to update here so all of you can know how K and the boys are doing - and maybe offer him a little support. He does read the comments here!

We took all three kids to the movies yesterday to see Nim's Island - the kids really liked it - it might have been a little advanced for Tommy - but the animals and funny parts made it worth it for him too.

Home Again!

2008-04-10T06:33:00.000-07:00

YAHOO! We're home. I can't tell you how glad I am to be back here. Of course, the homecoming is never without drama...because you're supposed to have all the meds and a nurse home visit the first day you're home.

First, no one wrote the orders for us to leave, and the home health nurse could only be there between 1 & 2. Needless to say, as it inched closer to noon, the nurse and I were getting really nervous.

Finally we got the orders to go home, and headed out (with me holding the largest stuffed horse in America) only on the way home, Brian called to tell me the the home pharmacy sent the IV meds, however, they sent no heparin. Heparin is what keeps her line from clotting. Without it, we could easily loose the line. It took 8 phone calls and almost 9 hours to get the Heparin here - in fact it was nearly 9 pm before we finally got it.

The nurse came out to show us again how to infuse at home, of course, she was not here until 2:30, which makes me so glad we were so worried about getting us home between 1 &2. Ironically, it was the same nurse as the last time she had a PICC line, which at least made it nice that we already knew her.

I've never been so excited to get out of a hospital. I had a not so pleasant discussion with a random doctor about K.'s health, and all I wanted to do was get home following it. I won't go to much into it, but needless to say, I ran into an inappropriate doctor, what a shock. It is what it is, and I'm not going to spend anymore time worried about it.

K is both glad and bummed to be home. glad because she missed her Dad and brothers, bummed because she now does not have the playroom every 2 hours and volunteers to play with her. It's amazing how much that child does not mind the hospital.

Speaking of playrooms, M. K's good friend visited her on Tuesday, and K. and she went to the playroom. K. has to wear a mask in there, as she does anytime she is leaving her room, because of the risk of hospital acquired infections. M. wanted to know if she should wear one, and when I told her she didn't have to, because she has all her immune system, M. asked if she could wear one - just like K.

How sweet to have a best friend who will wear a mask with you? I should mention M. has also decided she wants to be an immunologist!
Thank you for all the nice thoughts while we were inpatient, and the warm well wishes. Many of you left comments about C and what a good brother he is. I couldn't agree more.

For now, Brian and I are pretty tired. We're on spring break from school, and I leave for Belgium on Sunday for a speech I am giving. I'm pretty tired, and hoping to totally recover before I get on that long flight. My first leg is from LA to London direct. I think Brian told me it's 10 hours long. From there I go to Belgium, which is very short flight.

In the meantime, Brian will be infusing K two times a day while I am gone. I will fly back from Paris on Saturday (a day early) and will fly back to LA. C. and I will leave for New York on Wednesday after school and will return Friday evening in New York we're going to the Modell Foundation Spring Gala. C. is doing a book signing, and is SO excited!

All in all, we are doing okay here.

I have a special request here today. If you visit this blog today... leave us a message and let us know you're here. I think there are some of our friends visiting us, but not commenting, because we have a ton of lurkers.... leave us a note - we want to know who you are! I've noticed some of the locations visitors are coming from, and I'm pretty sure we know some the people... leave us a note... let us know you're out there!

Day 5

2008-04-08T06:00:00.000-07:00

Well. The PICC line is in.

(The top line is the PICC - she still has an IV in the hand as a precaution)

It is actually a true kudos to UCLA because the PICC nurse remembered K, from 2 years before, and did not just want to try to stick it the procedures room like nothing happened the last time.

Placement was done in the Interventional Radiology Lab which means she was able to X-day and see what was happening, along with having fluoroscope to be able to see where the line was headed. This is pretty important, because if you don't get proper placement it makes the whole thing much more difficult. Sometimes you need to go back and forth and reposition and last time ours turned up and moved outside of where it needed to be twice last time.

Of course, because it was done in IR - it means it took a LOT longer to get in. In fact, we waited until 4 pm... and she couldn't eat or drink anything. By anything I mean, nothing, no water, nothing.

For the first couple hours, it was okay, she spent sometime in the playroom, and got a visit from the best therapy dog ever. If you don't read my blog frequently, you might not know this, but our clinic has a therapy dog, Murry, he, and his therapy partner, Kristin have been coming to our clinic for over 2 years now, and K loves Murry. Murry usually goes to clinic, but when he and Kristin heard K was in patient, he made a special hospital visit. Nothing is better then a visit for K from Murry and a visit for Mom from Kristin. It so helped to pass the day.

(Yes, then she changed clothes - because she barfed up a med all over herself, which we have now changed to IV because it tastes so bad she can't handle taking it).

However, by 4 she was an emotional wreck. She was crying, and hungry and nothing was going to make her happy or comfortable that Mommy or Daddy could think of. In fact at one point she told me "Everything you're telling me is making it worse." through her sobs.

Enter, big brother, C. He brought her his toy from clinic, he was across the street getting IVIG yesterday, and wanted to see his sister and when she began crying for him, we let him in. He crawled up in bed and got her calmed down instantly.

When they came for her, to wheel the bed down, we told her he needed to get off the bed, she feel apart. Super C to the rescue. "I'm never going to leave you sissy, I'm right here" he said holding her trembling little hand, not leaving the bed. The nurse let him stay in the bed all the way down to the basement, and the entire time he was talking to her, telling her that he was going to stay, and that she would be okay, and that brothers were always in your heart.

Brian and I were nearly in tears as we watched our 7 year old comfort his sister in a way we could not.

When we got to the IR lab - Charlie held her hand as they explained to me what they were going to do to put her under. When we got her in, and got her under, I suggested Brian and C go get something to eat or go play out on the grass, and C refused. C sat in front of the door to the lab the entire time waiting for his sister because as he said "I promised her I wouldn't go anywhere, that I'd be right here waiting for her."

For Mommy, the best part was that Adina, her child life specialist, who K really relies on, and I really rely on was with her the whole time. Even though she's under, it makes me feel better to know if something went wrong, Adina is with her and loves her. Call it paranoia, but if something was to go wrong I feel better knowing someone who loves her is with her.

I think it took about 30 minutes, and when she finally came out, C and K curled up next to each other on the bed and rode back up to her room talking about how it went. It's such a burden for a little guy to feel like he needs to take care of his sister that way, but honestly, I'm so glad he was there, because he was exactly what she needed at that moment. He's such an amazing brother.

After the line was placed, they lay in bed together hanging out watching the Suite Life

K's PICC line is doing well thus far - I feel like I'm waiting for the other shoe to drop, since last time it went bad after 36 hours - hopefully that won't happen this time.

We'll head home tomorrow I think, just waiting to talk to the doctors and see what they have to say.

Thank you so much for all the good wishes - and someone asked - yes, we will do the Antibiotics at home for the four weeks - which is such a blessing. I'd think K can even go to school while the PICC line is in, as long as she doesn't play outside.

Days 3 & 4,

2008-04-07T06:17:00.000-07:00

What a weekend.

(Yes, someone got her own camera, and is turning into the K-arazzi following people around with the camera... I have no idea where she learned that from).

Saturday was filled with many a guest - Grandma, Auntie, Roz our friend from camp, Jeff, another friend from camp (the two of them deserve their own post with how much they have done to help us) and Daddy and C & T came down to visit. It was filled and busy, and our IV worked great all day.

On Sunday, Uncle Steven and Heidi came over, bringing with them a horse that is larger then K, and sits above her on the bed. Also visiting was Molly and Lisa my good friend, and one of K's best friends. By mid day Sunday we knew we were loosing our IV, which we really need for her to get the PICC - and we were hoping we could get away with not needing another stick before this morning. Sunday was slightly more stressful....

The plan for treating this sinus infection was totally developed. IV antibiotics for 4 weeks, plus an oral. It's a good plan, if we can actually get the PICC in, and it will stay in.

For those that are wondering PICC stands for Peripherally Inserted Central Catheter, it will go in her arm and toward the heart so it rests in the big vein next to heart - this will allow her medication to go in without needing a new IV every couple days. She will go under to get it inserted.

I forgot to mention that on Sunday Daddy stayed with K and the boys and I met Jeff at a park - what a great time we had feeding ducks, playing on the equipment and just hanging out together...

So, I gotta be honest, despite all the excess stuff, I'm really worried - and nervous. I hate that she has to go under for the PICC line, I hate when the kids have to go under. Add to it, I'm excessively worried about if this will work this time. I'm trying to think positive, trying to think that she is older, and bigger - but I do know, he veins are not any better than they were 2 years ago and that will be the biggest stumbling block. I'm worried especially because if the veins don't work, we're outta luck, and frankly, the IV she had since Wednesday went bad at midnight, and we had to get a new IV - and even totally hydrated, it took 2 sticks, and 3 nurses - and this is when she is doing well.

If you're the praying type - an extra prayer for good veins would be appreciated.

Day 2

2008-04-05T12:19:00.000-07:00

We are in our room on the children's unit, how hard it is to be here. Our room mate is on her way home after getting a pacemaker. She turns 10 on Monday. Puts all our problems in persepective.

K's sinus infection is, unfortuately, worse then we had expected - and we are setting up a time for her to get a PICC line (an IV that will stay in place for 21 days - if all goes well) she will be put under for a short time to get it on Monday - the catheter goes right to her heart and stays in with little problem. She has had a PICC before - 2 years ago - also for a sinus infection. That time, it did not last 36 hours. What was supposed to be a 3 day stay was a 15 day stay. We are trying to think positive, and hope that this will go much better.

They've also looked to see how her adnoids are - not exactly sure why - but I'm sure I'll find out in the next few days. We've already seen immunology and infectious disease, and are now awaiting ENT. Brian and the boys will come by later, my Mom and one of my sisters are coming over in a bit, and our friend Auntie Tammy already stopped by.

I'm gonna stay one more day, and then Brian is going to spend tomorrow night so I can play with the boys.

Darn it. I hate sinus infections.

2008-04-03T20:48:00.000-07:00

So. I was hoping against hope that we would find out that K.'s sinuses were actually, you know, clear. I gotta be honest - sinus and GI issues are the two things we struggle with. We still have a lot of GI issues. We will always have a lot of sinus issues - it is the one area we consistently get hit with. IVIG just has a harder time really hitting the sinus issues. They are not clear, they are actually according to the doc "significantly infected." What does that mean?

K will be admitted in the morning, we tried today, but when there were no beds, the doctor decided to get her a stat CT scan out patient. This was a great plan, and when it came back with a clear infection, given the history (already on IVIG, 4 rounds of oral, and on the 2nd round of IV antibiotics) - it's time to see what we can do to clear this up - and stronger IV antibiotics, more often will ususally help.

She'll see the infectious disease doctor and the ENT tomorrow, and that should be helpful to see what they have to say. We think - tentatively - we're looking at 7 days at the hospital - UCLA - and we'll see beyond that.

Brian and I will take turns with her and the boys - in part because, well, I'm leaving for Belgium a week from Sunday for work, which I'm a little worried about- and I need to spend time with the boys too in this next week.

I read Hallie's guest blog, and the thing is, we are really calm. If we didn't have IVIG on board - I'd be really worried, but the thing is, with IVIG, we do really well, it's been two years since we've been in the hospital, and I'm so grateful for that. I don't talk a whole lot about it - but in the first couple years of the kids lives - we had 7 hospital stays and 7 ER visits, at one point in time we had 120 visits to the pediatrician in 18 months. That's insane. All the in the first 5 years. In the last 2 - we have not had a single admission, and more then that, our day to day visits are down to about 3 a month. That's a phenomenal change.

At one point in time, we didn't have a single doctor we trusted, now, we have many. We'll likely see our pediatric ID guy - Dr Frog's Dad (not his real name, but yes, his real name rhymes with this) and more then that, we'll have our immunologist, and our ENT and all in all - we know we're in good hands.

I went to the plant where the kids IVIG is made this morning, to prepare for my visit to overseas and to have lunch with my friends down there - I visited the place where the plasma is turned into medicine. It's so humbling. So, so, so humbling. I can't tell you how much I love to be there, among the people who make the medicine who make our lives possible. I was able to get a refresher tour - to actually see the plasma turned into medicine. What an amazing gift. So - K will go in patient, and we'll get the medicine we need, and it will be, what it is meant to be.

Thanks for the prayers, and well wishes and good thoughts... I'll leave you with a picture of my little stinker, just so you know she really is fine - this was her - yesterday at clinic getting antibiotics...

Um... hello - taco tongue? Let me just add, I can not do this. What exactly allows someone to be able to do this? Can you? It sorta freaks me out. All three of my kids can do this - me? I have freakishly under developed tongue muscles apparently.

Oh - and let's just ask... what is up with the Flashdance pose? Is she sneaking into the tv room and watching old 80's movies at night? Seriously - she is 5 you know. A bit young for the Flashdance anything...

.
Oh, and yes, she is continuing to eat and drink, and well, let's be honest, she's also got mama so wrapped she convinced me to buy her a Coke Zero at clinic... Bad Mommy Award.

In Patient

2008-04-03T06:04:00.000-07:00

UPDATE #2 @ 9:03 EST

Hallie again....Just hung up with Dayna. Results are in and K has a serious sinus infection. She will be admitted tomorrow. (as soon as a bed becomes available)

Dayna's mommy intuition was right all along. She pushed for the CT scan and it's a good thing she did. K needs IV antibiotics for a 7 day period. Without the meds, she wouldn't get better.

Please keep the WHOLE family in your thoughts and prayers, but especially little K.
Although this isn't the first time she's been admitted, it's still no fun to be a sick little girl facing a week inpatient.

Will continue to update as Dayna requests.

UPDATE @ 6:30 EST

Hallie here from the Wonderful World of Weiners. Popping over to give y'all a quick update on K. Spoke to Dayna....they are at UCLA preparing for an outpatient CT Scan. This scan will hopefully give them a clear picture of what's up with K's sinus issue.

As of now, there are no rooms available to admit K. They are in a holding pattern waiting for a bed to open up. There is also the possibility that they will try to get her admitted via the ER. Guess we'll just have to wait and see what happens.

Dayna sounds calm which isn't surprising. Although this all seems so chaotic and stressful to most of us, it's sadly par for the course for this family. Brian's home holding down the fort, the kids, the dog and the cat while Dayna's with K.

I"ll update if/when I speak to Dayna again. For now, please keep little K in your thoughts and pray for a quick resolution to this latest issue.

It's certainly never boring at Dayna's house!

(quick hello to Brian, C, T, Duke and Bella!) :)

It looks like K is being admitted to the hospital later today. She has had an on going sinus issue for the past couple months and we can't seem to get it firmly under control. Her immunologist was leaning toward putting her inpatient, getting a CT scan, and seeing if we could figure out what exactly the problem is. She might just need a few days of a stronger antibiotic to get a hold of this infection and take it from there.

We're fine - this is not panic time at all - we've totally been in the position (with K) before - she spent 15 days in patient 2 years ago - and we're just going to take it day by day and first see what the CT scan shows and then make a plan from there.

I'll update later today. I don't expect she'll go in until early afternoon (when they have a bed ready for her) - I'm actually planning to have lunch with my friends at Baxter today - and have not cancelled it, because I don't think she'll get in before lunch (in fact, I'll be happy if she gets in before dinner).

:) Have a good day all - healthy thoughts, and prayers appreciated!

So I decided... I'll laugh.

2008-04-01T18:19:00.000-07:00

If you read the previous post... well... um. April Fools!

I totally got my husband... whose reaction I caught here...

(The look on his face screams terror in my opinion :) )
And, well, my parents too... my dad sat speechless and said he needed to come up with the right words (I suspect he was thinking - what? is she crazy?)

I kind of feel bad because of Pam's response - that there are people who are trying and can't get pregnant...and I totally don't want to seem like I'm being insensitive, which I kind of feel bad about now.

For all who don't know me in real life we are done having biological children. I do think I want one more - however, we would only do it if we could adopt a special needs child. We feel strongly that we are able to handle a special needs child, and we worry we wouldn't have enough time for a healthy one (I know, that sounds crazy doesn't it).

Hope you got someone good today!

Not Sure if I Should Laugh Or Cry

2008-04-01T12:44:00.000-07:00

Leaning towards crying.

Crap.

On Missing My Family

2008-03-30T04:32:00.001-07:00

How can I not miss these cute little faces? (Easter day - I love when my boys wear matching shirts)

My husband talking on the cell phone to his old partner - I love when they talk, they're always laughing!

I miss my kids. I miss my husband.

I've been gone for almost a week, and in that time I've talked to about 300 employees of the plasma collection centers, and about 100 donors of plasma. I'm excited and I love it and every minute of every day is busy and filled with talking and moving and joy. But today, I'm missing my family.

It's so hard to be away. It's hard to listen to my husband talking about the birthday party they went to, and the ice cream they're eating while they watch 101 Damlations. I miss C when he gets on the phone and tells me he got 100% on his spelling test, and how proud he is! It's hard when I talk to T and he tells me about his new preschool class (he switched schools last week) and I really miss K right now. Her ANC is low, and she can't go to school until we get confirmation it's gone back up (ANC= Absolute Neutrophil Count - they are like baby white blood cells and tell us about the ability to fight future infections, 1500 is normal - K is at 900, not too bad at all, but enough to keep her away from the classroom until she's above 1000).

I miss my husband. I miss having someone to talk to, to cuddle with. I miss his hugs, and the way he makes me feel like there is nothing in the world as important as I am.

I'm going home tomorrow. I'm ready to be there, I don't for one minute regret this amazing time I've spent talking to donors, and employees the people who save my children's lives, and yet, I'm ready to return to those I love.

Coming tomorrow by special request from CJ's grammie - The plasma donation process, and if you want to help - how you can!

Sleepless in Iowa...

2008-03-26T20:58:00.000-07:00

Retelling my story, our story, the journey from diagnosis, to health, from hopelessness to a place where our children attend school, and live, I mean, really live a life worth living, is painful. It's so painful that often I can't sleep afterwards.

Every night this week, I'm telling that story. I talk about what it's like to live with chronic illness, what it was like to lose hope for my children and their future, to worry about how we were going to help our children live a life worth living. More then that I talk about how much I appreciate the people, yes, the real people who donate plasma so that my children can attend school, fly on airplanes, and live a real, normal life. How much I appreciate the people that collect the plasma do it. How much their jobs matter. How much we, as real people have a real chance at a normal life because people do their jobs and donate plasma.

The reality is, it's painful, and it's hard to share it. By the end of the night, I'm both exhilarated, and exhausted. I'm excited and sad at the same time. Yet, at the same time, I can't wait to keep doing it - I love it, and I'm overwhelmed at the same time.

Tonight, I told the staff of a plasma collection center in Iowa that what they do matters. That they matter. That they come to work, and it makes a huge difference in the world.

At the end a 50 year old woman walked up to me, and told me in her in entire life, no one had ever told her that she mattered. It took everything I had not to sob to hear that.

How can I not love it? For every once of pain, for as hard as it is to share the story, to tell our journey - how lucky, how blessed am I to get to share? To get to tell others that their job, their place in this world - their plasma donation, the time they spend giving this liquid gold - matters.

I can't sleep tonight, I often can't after I've spoken, but tonight, I'll gladly lay here sleepless, and all rejoice that I'm overwhelmed from sharing, and can't sleep - I'm blessed. We're blessed. Chronic illness and all.

Iowa and Other Stuff

2008-03-24T17:38:00.001-07:00

So. I'm in Iowa. For the week, at which point I head up to Minneapolis for the weekend, then home again (thank goodness). Anyone out there reading from either of these places?

So... a couple things...

C. lost his front tooth. I mean, holy crap, am I old enough to have a kid loosing teeth, and better yet - is he old enough to be loosing front teeth? Come to think of it... anyone have any super glue?

I'm not sure I mentioned the horrible croup that T had, but K. also had it last Thursday night. Two times last week we thought we were going to have to call 911 - the good news is - I took K to the doctor to get her lungs checked (they were clear) and while we there - she read me Green Eggs and Ham - as in - really read it - as in, my girl is reading! I'm so excited it's clicked for her! Doesn't she even look bigger?

I happened to catch a cute picture the other night - check out T sleeping with Bella - which is interesting, because last week, when K and T had croup, Bella was right there, checking on the kids. Brian and I were both super impressed with what seemed like her worry for the kids.

Oh, did I mention - I finally got my new camera? I've been practicing with it.

Two little flowers in our yard.

Dripping wet.... and full of color!

Brian's Dog Duke

2008-03-21T06:40:00.000-07:00

Remember how much I wanted a dog?

For as much as I wanted a dog, and the kids wanted a dog, Brian was pretty indifferent. He was content to not have one. He kept saying we have a lot on our plate (okay, he has me on that point) and the kids are still young (check, 7,5,4, young), and it would require work (yup, dogs require work).

Then, he saw Duke's picture. Duke looks a lot like Otis, a Basset Hound we had when we were first married, a Basset Brian had gotten when he was just 8 weeks old, and had just adored.

A Basset we had to surrender to the Basset Rescue when C was 18 months because he became agressive with C after one too many times of C trying to "be friends" with him. The same rescue Duke lived at. It was one of the hardest things we've ever had to do.

We spent lots of time trying to fix the problem. Lots of money on vets and books, and training - none of which worked. Giving up Otis was so hard on all of us, but very hard on Brian. This was his first When Brian saw Duke's picture, he encouraged me to go get him...right away.

Is it a suprise that Duke has quickly become Brian's dog? With the exception of sleeping in K's room at night (no shock there, K. lets him IN her bed, and I would never allow that) Duke follows Brian around. All. The. Time.

When he walks out the door, Duke waits at it.

We bought him a little dog bed, and he wouldn't sit on it, until it got moved next to Brian's chair.

When Brian leaves this is where Duke waits.

Then he comes, lays down, and looks sad waiting for Brian to come home.

What Sick Looks Like

2008-03-20T07:54:00.000-07:00

Holy cow - that's how high it can get? He's thinking! Yes, we have the same thermometer as the doctors office - I know, it seems crazy, but I gotta say, it works like a champ and we're never worried if it's accurate or not.

So, we're getting hit hard here. The good news is, we're getting hit with a different kid having the worst day each time it hits.

K is currently having her worse day.

C had his worse day yesterday.

T's worse day was Monday/Tuesday

I really don't have to take her temperature. One look at her cheeks and I know if she has a fever - and how high. This is 101 - red, but not red from ear to ear (which is 103 BTW)

I know how sick he is, because if he's not moving, we know something's wrong.

Poor little guy... look at these dark circle

As an ending note......

B strain.

2008-03-18T12:55:00.000-07:00

It's not just croup. It's the flu. Strain B. C. has it. T has it. K has it. I have it. Brian is spared the flu, but instead has to take care of all of us - trust me, I'd rather have the flu then take care of everyone. T is so cranky. I am achy. C is needy and K well, she's needy too.

Help me out here. Tell me something funny. Make me forget the whole damn family is sick.

Croup

2008-03-17T21:08:00.000-07:00

Sometimes I feel like croup should have been called crap. As in Oh Crap, he's got croup! Which, is really much cleaner than what I want to say. Last night was horrible. T had a horrible croup attack, and when I say horrible, I mean, Holy Cow batman! We might need to call 911! There was a tense 25 minutes at our house. Subsequently, Brian and I are really tired today, because it took a few hours before we were ready to sleepy calmly. He's still feeling really lousy - has a fever tonight (which is a little on the unusual side for our kids - they don't often get fevers)

Despite being tired I took T to the doc, took C to OT, took myself to the doc, got a new camera - that B picked out for me and yes, and did school pick ups and drop offs and all that other day to day stuff too!

We're hoping for a much better night tonight.

Oh, and I just had to post another picture of Duke. He went for a walk today. So great, he stayed with me, did not pull me at all, sat down while I talked to the neighbors, and about hald way through the walk looked up at me as if to say "Lady, I'm part Basset, I don't do walks - time for you to carry me." He's all tuckered out now, sleeping on the floor in front of me (he's tried to take over the couch - we're working on that).

Oh, and he found an old bone in the backyard....

Meet Duke

2008-03-16T19:55:00.000-07:00

This is Duke. He is 3 years old, and we rescued him from the Basset Rescue near us. This is quite the full circle story, which I'll share in more detail later - but, I thought I'd share - we've got our little man. He's part Harrier (which is essentially a Beagle on steroids) and part Basset, as you can see from his head and ears. Honestly, we didn't choose him. He chose us. When we went to rub bellies, he followed us around for 2 hours and when we went home, we could not stop thinking about him. We picked him up this afternoon.

He's loving it so far, and is house broken already!

Reason #247 Why I Love My Children

2008-03-15T16:24:00.000-07:00

My children gave me flowers for my empty startbucks cup..."because you are the best mommy in the whole world." Of course, the possibility that I may be getting buttered up for something big has crossed my mind.

2008-03-14T06:09:00.000-07:00

Last night we went to McDonald's for McTeacher night, where some portion of the profits go to the school. Apparently we're only on the "commitment to health" bandwagon when it doesn't involve funds for the school. That part sorta ticks me off, at school, the kids can't have candy on any holiday, or have parties that involve food like cookies or ice cream, yet they can go right ahead and eat at McDonalds to raise money for the school. Sort of a mixed message, no?

Back to the story. We're driving there, just C and I, and we're going to meet the rest of the fam as we're coming from an appointment for C. We have him seeing a psychologist to talk about the bully issue, because frankly, we're worried about the effect this is having on his confidence, and self esteem.

As we're driving, C is crying because he missed his teacher at McTeacher night, her shift was right when we had our appointment, 4 -5pm. All the sudden, for the first time ever, he blurts out "I wish I had a normal life" through his sobs. I know where he's going with this. How could I not? I've been waiting for him to say something like this for years.

"What do you mean, a normal life?" I ask him.

"I wish I had all my immune system, I wish I didn't have so many doctors appointments, and I didn't have to take medicine and go to the doctor, and that I could just be normal and have a normal life like the kids in my class." He's crying and I'm driving along trying my best not to sob in front of him.

"Why do you feel that way?" I ask him

"Because my life isn't normal. I wish I could use my scooter to build a time machine and go back in time to November 7 of 2000 and give myself all my B cells and antibodies. I'd go find K and T and give them one too. God didn't give me an immune system and I really needed one, and he forgot me."

Yikes.

A lot of talking followed. A lot of tears. A discussion that's not yet done, and probably won't be for months, or even years. I look at him and I see such an articulate amazing little boy and he's really suffering right now. This is truly where chronic illness and childhood collide. Nothing breaks my heart more than to listen to my 7 year old struggle with a question I don't really have answers to, with issues that took me a year to deal with in my 30's just as the parent, not as the one living it, listening to a seven year old process it is so painful: Why me?

I want a dog! I want I want I want!

2008-03-09T07:38:00.000-07:00

I want a dog. The kids want a dog. We all really really want a dog. I mean, REALLY. Really. Want. A. Dog. The kids want a dog so bad they sometimes pretend they have an imaginary dog. No better way to make a mom feel bad then pretend there is an imaginary dog hanging out with you.

We went a looked a Lloyd, who was by far the cutest dog I have ever seen. I mean, wow cute. Funny, his spots - not black and white - brown and white, and his little one blue, one brown eye - adorable. His disposition - amazing. He was just easy going and wanted to hug and kiss and cuddle with you. Only problem?

Dalmations are horrible at shedding. I mean really really horrible. We were all covered in dalmation hair in the 5 minutes we saw him. I asked the gal if this was normal and she said Dalmations shed all the time, and an excessive amount. She said they shed faster than you can clean. They are by far in the worst catagory for shedding. Um. Yup, that's not gonna work.

I have three kids with sinus issues. No "allergies" to dogs, but we are talking about kids who have weakened immune systems. So, well, I didn't think Lloyd would be the right dog for us. Actually, I know Lloyd would not be the right dog for us.

So, we're still looking - still trying to find the right dog.

In the meantime. I'm stressed. I want a dog, I want the right dog. I'm having trouble figuring out what the right dog is. I'm asking all of you out there, what kind of dog do you think we should get? What kind do you have? Tell me about the greatest dog breed - and the one you think we should not get!

Proof That I'm Not Always A Good Mom

2008-03-08T17:46:00.001-08:00

When I only had C. I had great parenting ideas. No TV. No video games. No guns. Jammies always had to match - top and bottom, I mean, for goodness sake, how hard is it to match the jammies?

My how times have changed.

Now, I have three kids, and my youngest, T. is four,

His jammies don't match.

He plays with guns.

and plays video games, on the tv

Yup. That's me. Parent of the year.

What about you? What changed overtime in your parenting ideas? If your not a parent - what do you think you would NEVER do?

Mini Jeff & IVIG

2008-03-07T05:39:00.000-08:00

T, our youngest, also commonly called Cuddle Bug, has a friend named Jeff. He met Jeff at the camp we go to called The Painted Turtle. T loves Jeff, and I mean T. just thinks that Jeff is about the best playmate ever. As parents, we totally agree. Jeff asks him questions so that T will talk more, and they play imaginative games that brings T. out of his shell. In fact, we like Jeff so much, we frequently joke that we're going to let him move in with us.

I should mention, Jeff is in his 20's. He was one of the counselors at the camp, and we've become very attached to him. Our whole family loves Jeff. The kids think he's half kid and half adult. He's a special ed aid at an elementary school, and works in a daycare, and is going to school to be a teacher. How much more cool could one guy be? Oh, yes, and he volunteers his weekends at a camp for chronically ill kids. Hello Saint Jeff. Plus, he'll occasionally call us and demand that my husband and I spend time together while he plays with/babysits the kids. Talk about lukcy.

Anyway, Jeff bought T this cute little outfit for his birthday, which he wore yesterday. He called it the Jeff outfit. Then, he wanted Jeff hair too. I present to you... mini Jeff

We all headed down to IVIG yesterday. I think K is sick of me using the camera on her.

Not an ounce of editing on this picture by the way, how she was standing made her look like this. I know, I've become the mamarazzi...you know paparazzi...

C got his IV in

and then proceeded to play XBox with one of the other little boys from clinic - also 7, also in first grade. Then, I looked at his arm and thought... hmm... wow, something looks wrong. the bottom of his hand was purple and the middle looked very swollen. When I checked his IV, pulling the coban off, I realized something was wrong....

His IV slipped out, and was still infusing. Ewwww. Notice all the extra fluid?

Weird thing is, normally, that's painful, and they tell us right away. Nope, not this time. Not a word. Anyway, he got another poke and did just fine. However, I think we're on a no video game restriction at clinic - which just stinks, but this is the second or third time we've had this problem with the IV slipping out.

What would you name him?

2008-03-05T19:30:00.000-08:00

You know, if you were thinking of adoption him. Let's just say you got a cat, because, well, you thought you should test the waters and see how an animal fit in your house. Pretend for instance you had been looking for a dog for months and months and months, and this cute little rescue Dalmatian, who was only 10 months old was up for adoption, never having had a forever home.... and say... his name was Lloyd, and you really disliked the name Lloyd, would you change it? If so, what would you call this little cutie... you know, if you were thinking of maybe adopting him.

You know, because I only have till Saturday to come up with a cute name... because we are going to meet Lloyd, and if he's good with the kids and he seems trainable - then it's possible, that you know... maybe he might come home with us.

You know, maybe. Might. Hopefully. Fit in with the family. Cause his foster mama said he's a little lover and he always wants to just hug and snuggle, and really... we could just a hugger and a snuggler...

The hardest one to convince has been the husband - because, well, he claimed he didn't want any animals and yet, every morning, this is what I find him doing....

You know, cause he hates cats and all.

Of course, he wants another Basset Hound, and I wanted a chocolate lab or Chesapeake bay retriever, and somehow, this little guy popped up and you know... maybe.

Not for sure.

We're thinking about it.

It MIGHT happen.

(But isn't he cute?)

It's That Time Of Year....

2008-03-05T06:48:00.000-08:00

Well... it's that time of year.

Time for something to go missing in the mouth....

I so love those little holes!

Time for parent teacher conferences... it's well known that I am a morning person and often up at the crack of dawn (yes, it's not at all unusual for me to be up at 4:30 am - as I was this morning) so I got the first conference of the day for C and it is immediately followed by K's conference. Which of course, I do not mind, at all.

Following the conference we should know if they will survive the rest of the day. Just kidding, of course they will survive - they just might not have anything in their rooms. : ) Actually, truth be told, I'm expecting good ones - I see that K has made a lot of improvement in taking school a little more seriously, and I know C is just fine. Of course, if I come back, and I'm distraught, I'll blog about it anyway.

Time to weed, and plant new things. Our front yard was in desperate need of weeding and planting, which is what we started yesterday - hopefully will continue this afternoon.

I'm a slave driving kind of parent and made the kids come help. K and T were super helpful putting all the piles into the green trashcan. C on the other hand, planted himself on a rock about half way through and when asked what he was doing, responded with "I'm just watching the beautiful sunset, God sure gave Mother Nature some good colors to work with" Sometimes he shocks me by how smart he is. I somehow doubt he was really that into the colors, I think he just wanted to see if I would let him stop.

By the way, how cute are these little gloves. I bought them hoping the kids would get excited about being out front gardening... that didn't work for C. The younger two fell for it hook, line & sinker.

On another note, I am apparently grossly out of shape, because, well, I was in agony this morning and last night my fingers were actually numb last night.

Let me add for good measure, I've never planted a garden - so I have no flipping idea what I am doing - but none the less, I've gotta do something the massive number of weeds in the front yard just don't do it for me. Any suggestions?

This was the before... yes, I know... frightening.

After - and well, we're not even done yet - but it got dark outside and I had to let the kids go in because well, I was afraid they would call the labor department and report me for child labor law violations.

Most of all it's Girl Scout cookie time. YAHOO! My husband is the original cookie monster, so when the girls came around taking orders... well, I went slightly overboard. 50$ later the cookies arrived yesterday, and never was a happier husband found.

So - I just gotta know... what's your favorite? For me... it's this one... from the freezer! Yummy!

Have a great day everyone!

Home!

2008-03-03T05:35:00.000-08:00

It is so totally nice to be home! It's not only wonderful to see my children, but to sleep in my own bed, to have coffee first thing when I wake up, to take a shower with the same consistency from day to day!

In the 9 days I was gone - I was in: Wisconsin - Green Bay & Manasha, Michigan: Mount Pleasant, Walker & Kentwood and Indiana: Fort Wayne, Muncie, Bloomington, Kokomo & Layfette. Obviously some cities just for hours - not a whole day! For as busy as I was, and as much as I missed home - I am energized, and ready to take on the world! I loved being out among the people who change our life. I talked to so many plasma donors and shared our story, and was able to say thank you! I was able to speak to employees and tell them that What they do really matters. How lucky am I? It was a long trip - I missed my kids, and I was ready to come home - but also, I am ready to go back out and do it all over again (Have I mentioned I am going to be going to Belgium next month?)

So, we had a meeting with the principal, vice principal, and school psychologist yesterday about the bully issue. The principal is claiming he did not know about all the incidents (when I was standing with the teacher when the last incident took place). I have continued to loos faith and confidence in the principal, but have gained respect for C's teacher, and the school psychologist who, in my opinion, are dealing with a defensive principal, who has serious issues with control and safety on the playground.

They have put a plan in place to try to stop this -I'm not sure it will work, but I feel like I need to give it a try. Interestingly, I got a phamplet home yesterday called "Getting Along" Creating a Safe Environment for All Students - which was put together, or revised on 2.27.08, which followed the latest incident, in which I clearly outlined my steps that would includelegal action. I'm not sure if the district ever had a policy in place, but they sure have one now!

I'll be back to blog a little more this afternoon!

Dayna

Can It Be Thursday Already?

2008-02-28T02:54:00.000-08:00

Holy Cow! Time flies when your drive around like a maniac trying to get from place to place! My speeches are going well, and I'm slightly overwhelmed and tired, but at the same time totally energized and having the time of my life. I just love telling our story, and showing people that what they do matters - I've met some amazing employees and some fabulous donors of plasma!

I am currently in Muncie Indiana, and headed to Bloomington next. I must go and get to the center (yes, I'm trying to get there by 7am!)

While we've been gone, I've also been dealing with some teasing and bullying issues at the kids school. This is the 7th incident this year, and the 3 that resulted in C. being physically assaulted by the same group of three kids. We are frustrated beyond belief. We have, by phone, consulted an attorney, and are trying to decide what our next plan of attack might be... so I'm asking my readers - do you know of any really progressive ways to deal with bullies? Does your school do something really progressive that might work? I'm exceedingly frustrated, and angry and at this point, C is beyond upset. All this time, when he expressed fear, we made him go to school, because we felt like the school was doing everything in their power to protect him. Now, we feel very sure that his teacher is protecting him, but the principal...well we've lost all faith in him.

Any ideas?

The Trip... Continued.

2008-02-24T16:29:00.000-08:00

There is a reason they call Green Bay The Frozen Tundra.... I present to you - proof:

My speech went well, at least, I hope it went well. I like to tell the people I'm speaking with, that it's not really a speech, it's more of sharing a journey, or taking them on a journey with me. It's such an honor to sit among the people who play such a huge role in changing our lives, that it's hard to not be humbled when I'm sharing our journey.

On another note... I was able to make the flights to get me to Grand Rapids, Michigan, where I am now. Tomorrow, I head up to Mount Pleasant - and then back to Grand Rapids to speak on Tuesday. I flew on not one, but two RJ's to get here, and I cam confidently say, my fear is just about conquered. For me, getting over it once was what I really needed to do. I'll never love flying, but I was able to do it - in that tiny plane and that's what matters.

As a final note - CJ, my little C's pen pal is headed back to base in Florida, and I'm sure his Mommy is feeling a little sad. I've been holding this picture since K. and I were in Idaho and Utah - this is a picture of the dog tags we had made for C. to wear - which he does, proudly. I'm going to add a small version on my blog, along the side.... anyone else want one for theirs? email me at fladfamblog@gmail.com I might not get back to you until I get back from my trip (or you can just steal mine!).

I'm gonna leave you with a picture of my kiddos.... well, because I'm kind of missing them right now and it will make me feel better to look at them tonight before I head off to bed....

I hate Flying.

2008-02-23T06:10:00.000-08:00

I really really really hate flying, as in, holy moly, I hate flying. However, I really really feel a passion for speaking to the people who donate plasma and save our lives, and those who collect it and make it possible, so for that reason - I fly anyway because they are in the Midwest, I'm on the west coast.

However, for a day before I'm going to start a trip, I become such a nervous wreck, I can't do anything. I find it nearly impossible to get packed, to go about my business, to get ready to fly. Subsequently, my husband has to print all my documents out, get all of my electronics packed (ipod, Tom-Tom, headphones, car chargers), and for the most part he'll even do the laundry so I have clean clothes to bring on the trip. Often times, he's standing over me, saying "Don't you think you should pack now?" and standing with me, so I don't get side tracked or divert to some other task. Honestly, I don't know what I'd do without him.

All that is how he has to help when I'm flying on on big plane.

Now, I should mention, I'm deathly afraid of little jets. RJ's or regional jets to me are the scariest little things I've ever seen. They look like little tin cans. It doesn't help that I happen to know that when you're a pilot, the number of hours you have generally determine the type of plane you fly... more hours, bigger plane. My opinion? I want the most experienced pilot on my plane.

My fear of flying is based on a couple different things, but what it all comes down to as someone so clearly pointed out to me, I like to be in control. When I am on a plane, I am not in control, when I drive however, I am. I don't want my kids to be left without a mother, which is why I feel so okay flying when the whole family is on the plane I think. Of course, I know, statistically we are much safer on a plane than on the ground - but that's the difference between logic and the heart eh?

Let me see if a picture will help you understand what I'm talking about:

Little Jet

Big Jet

Me, I wanna be on the big jet, for the last five years, I have so wanted to be on the big jet, I would drive four hours when I got to my destination to avoid the 30 minute little jet flight. On my last trip, I took some kidding from some of the guys at the center where I was speaking about being afraid to fly in RJ (this from a group that was about to take a prop plane to St. George, while I was going to drive 8 hours to get there, with my five year old). I told them I was not afraid of flying in an RJ, I was afraid of crashing in an RJ. Big difference.

This trip however, it's winter, I'm in the Midwest, there is a lot of snow and ice. This trip, I agreed I needed to suck it up and fly on the little plane. My first two stops are Green Bay and Grand Rapids. I could take a big jet to Chicago or Minneapolis, or even Milwaukee but I'd be looking at 3 - 5 hours in the car, in winter, on the winter roads. My next stop, Grand Rapids, which in good weather is 7+ hours by car away. It makes no sense to drive that horrible drive in bad weather with ice everywhere. Besides, the one thing I hate more than not being in control is being weak, and really, it feels kind of weak to avoid something that is statistically so safe, especially when you're getting kidded and teased about it. Because, I am nothing, if not competitive and I'm not going to let a chance to clearly prove myself pass me by! ;)

So, yesterday, I flew in that big jet, I got to Chicago and I had a THREE hour layover, to sit and think about the fact that I had to get into a little jet. Then, I got into that little jet, which is, by the way, very very little. Then, we sat at the gate for 40 minutes while a man with the most annoying voice I've ever had the displeasure of listening to talked so loud every single person in that itty bitty tiny plane was forced to listen to him.

Thank goodness it was a short hop over, because I'm not sure I could have dealt with the man or the flight if it had been more than an hour.

So, here is the thing, I DID IT! I flew in a little jet, and it didn't crash! Plus, I did it without anyone else sitting and holding my hand. Thank goodness for iPods, and headsets.

I'm speaking tonight to some folks who collect the plasma that saves our kids lives, and I'm excited, and rested and I'm preparing a special slide show just for them.

So, tell me dear readers - are you afraid to fly? How do you do it? Any trips or techniques? I have two more little RJ flights tomorrow, and I'd love to try some new tricks!

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10. Double Digits. 2 Whole Hands.

The Need To Blog

C.J., YOU WILL FOREVER BE MISSED...

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Make A Wish - Walt Disney World Edition

Wishes Come True

Grandparents Day Tea

Dear Mr. President (From Kate)

A Letter to The President Elect...

Back To School Monday.

For The Love of Reading

The Fur Real Pony Saga

Stolen... 2008 Wrap Up

We Wish You A Merry Christmas...

We Should All Know Ourselves So Well.

Christmas Questions....

Wanna peek?

An Uncommon Bond

He's 8 Now

FAIL

Some Kids Like Cheese....

His Sleep Habits

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Advocating For Our Children's Health

This Blog Post Will Suck

Question Time.

Election Through the Eyes of a Six Year Old

Voting

Just How Tired Can One Child Be?

Sub-q, SCIG, Subcutanious Immunoglobulin.... The new way of doing medicine around here.

I Hate This Election

Have I Lost My Mind?

When A Mural Takes Your Breath Away...

Overheard....My 7 year old

Party Foul: What Would You Do?

Camp, Hope, and the Death of a Remarkable Man.

Crap. I'm old.

So Much To Catch Up On!

Bad Blogging Karma....

Chad's Champs, a Visit to Dodger Stadium!

My Favorite Summer Yet...

Home!!!

OMG! I CAN GET ONLINE!

3 Weeks Without A Computer... WILL I SURVIVE?

This Is Going To Be A Hard Day

9 things I Need To Tell You

HOME!!!

Skip Your ReRuns, and Watch This

To TV or Not To TV, That is the Question

I might be an Ebay Addict.

Crazy Hair Day

A weekend... In pictures

Poor Poor Dog

My Big Boy

Duke

Mother's Day Flowers

Being Mom

What I Miss

The Two Faces of Bella

D/C That PICC Line!

10 Things I Have To Tell You

I really missed you guys!

Belgium

The Network Expands!

Let The Crazy Begin

Home Again!

Day 5

Days 3 & 4,

Day 2

Darn it. I hate sinus infections.

In Patient

So I decided... I'll laugh.

Not Sure if I Should Laugh Or Cry

On Missing My Family

Sleepless in Iowa...

Iowa and Other Stuff

Brian's Dog Duke

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