Some kids get sick or hurt and within one doctor's appointment they are diagnosed. Many books I've read have said that is the worst moment. You hear that your child is not typical or healthy, and I'm sure it's shocking and heartbreaking. We have never had that moment. We have had doses of bad news over time. But no diagnosis or clear path ahead. 

Jude has gone to the University of Iowa Hospitals and Clinics 25 times in the last 25 months. He is 43 months old. 
A list of things Jude hates about going:

• doctors, med students, residents, fellows, nurses, etc. 
  
• waiting rooms (they are not lobbies so let's not kid ourselves)
  
• exam rooms (they eye ones are about 3 feet wide and 10 feet long, great for a kid with bad balance)
  
• white coats
  
• scales
  
• blood pressure cuffs
  
• anyone who starts by saying, "I'm not going to hurt you"

We traded our minivan in for a Prius. For real, it gets almost 50 miles/gallon. It's pretty good when gas is almost $4/gallon. Does anyone remember filling up their moped for $0.85/gallon? I do. The first time I filled the Prius up, it clicked off at $28. I thought the nozzle needed to be readjusted. Nope, it was just full. 

When we first started going, Chris and I would fill with anticipation and excitement. We were going to see "THE" specialist this time that was going to figure out what is wrong with our Juderbug so we could help him. It was a bit like this scene:

We kept following the yellow brick road to Iowa City, waiting to meet The Great Wizard of Oz. About 12 trips in, we realized that these appointments were important, but there was no Great Wizard of Oz for us. We also kept our sense of humor. This was our Christmas Card that year:

I love this photo because it's real. Jude is screaming. The rest of us are trying to laugh in spite of it all. He has a right to be mad. From only a few months old, he:

• Couldn't see (we think he sees up to 3 feet pretty well and has to be really close (3-6 inches) to see detail
  
• Couldn't hear (6 double ear infections in 6 months). Thank God for ear tubes. 
  
• Was having seizures

He was not a pleasant baby. And he still has his moments. But every day is a little bit better. 

After a failed attempt at a diagnosis in January, my sister saved the day. She said she knew a world-renouned pediatrician in Omaha that was willing to review ALL of Jude's medical records as a second opinion. We sent him the pile of papers. 

Miracle #1 - This doctor e-mailed me back and said, "Sarah,  I got through Jude's records a couple of times and have spoken to several different physicians about him.  I, with your permission, sent a Cliff Notes version to Dr. Paul Lipkin at the Kennedy-Kreiger Institute in Baltimore.  You can google it and find out about it.  It is probably the foremost clinic in the world for children like Jude.  So you should be hearing from him or someone in the near future.  Hope to meet Jude sometime.  If you are ever in Omaha headed to Hastings, please stop by.  If you have any other questions, please give me a call.  You have my cell number." I had his cell number!

Miracle #2 - I asked how we could pay him or what we owed. He said, "No worry.  Just do something nice for someone who needs it.  I am sure that you do this every day." I have tried to remember this often. 

Miracle #3 - I called Dr. Lipkin the day I started this blog. I was mad. And guess what, he called me back. He wants to see Jude. We have an appointment for Nov. 7. 

So perhaps we will still get a chance to meet The Wonderful Wizard of Oz yet. And if it turns out he's just a regular guy. I will click my heals together and know that I had the power all along. To love Jude no matter what. 

So I will end with a cinquain poem (click here to write your own):
Road 
Yellow, brick 
Driving along life 
Chris always beside me 
Journey home

What do Wanda Sykes, Judy Blume and I all have in common? We've all been diagnosed with ductal carcinoma in situ (DCIS) otherwise known as breast cancer stage 0. Stage 0? If you're going to get breast cancer, I guess this is the kind you want. I’m not even mad about it. I guess I think I’m lucky. So please don't say you are sorry.

Wanda Sykes said she kept it quiet because she didn't want to become the cancer "poster child.” "How many things could I have? I'm black, then lesbian," she joked. "I can't be the poster child for everything! At least with the LGBT issues we get a parade, we get a float, it's a party. I was real hesitant about doing this because, I hate walking. I got a lot of walks coming up!"

(One correction in this video: Wanda said this surgery reduced her chance of breast cancer to 0% when it’s actually lowered to 5-10%). 

I love Wanda and her attitude. Like her, with the support of my doctors, I've decided to eliminate the enemy as much a possible with a double mastectomy and same-surgery reconstruction. I'm not dancing with this devil. Breast cancer affected my maternal grandmother at 39. It affected my maternal aunt at 41. They both survived. My mother was not so lucky. She died of uterine cancer at age 46. I was 15 years old. I’m only 36 now.

What I've learned in the few weeks that I've been dealing with this, is that the treatment options are very personal to each woman. It really depends on the individual’s age, risk factors (including family history) etc. I'm so lucky that I was referred to the high-risk cancer clinic at the University of Iowa a few years ago. But I will tell you that having mammograms (squeeze away!) and breast MRIs (face down in a tube for 45 minutes while it sounds like a car alarm is going off) every six months is not fun. Even less fun was the stereotactic breast biopsy which I likened to being trapped face down by your breast, unable to move any part of your body for 40 minutes, while they shoot a needle the size of drinking straw into you. If I would have chosen a more conservative treatment (lumpectomy and radiation), my life would forever involve these tests waiting for it to come back. That was not for me.

Don’t get me wrong, I love my breasts. They have been with me on Joe’s ledge when I danced the night away, they held up my strapless wedding dress and they have fed both my children. But this graphic says it all.

While I wrote this, Chris gave the kids a bath (like he always does) and then he folded the laundry. And the reality is that while this is a deeply personal decision, it will affect many, many others—especially my family. The recovery involves three to six weeks of no lifting anything heavier than 5 pounds and lots of taking it easy. We’ve been so blessed with offers to help. A good friend is helping me organize it all. I’m going to post updates on this blog, so feel free to sign up to receive e-mails when it’s updated if you like.

I’ve also enrolled in a clinical study at the University of Iowa. I did it for a lot of good reasons, but most of all for Lucy. This affects her now too. My surgery is Oct. 10. It’s one day before she turns 6. Hopefully, I’ll be coming home that day. She said it’s okay because I’ll probably be bringing her a present, “as long as it’s light” she added.

So, we will end on a cinquain that Lucy wrote about a year ago. Our first poem together. Hopefully there will be many more poems in the years ahead.

Dog
Furry, Hungry
Barks, Eats, Fetches
I Like That Dog Licker
Bone-Eater

Do you know what year it is? 2012. Two thousand freaking twelve! I was promised flying cars. There should be flying cars by now. I've been saying it (to Chris' amusement) for years. 

The movie "Back to the Future" has hover boards and flying cars in the year 2015. Or how about the movies "A Space Odyssey 2001" or "A Space Odyssey 2010". Come on! We are living in the future right now.

I struggle with most technology. Today I was standing in our driveway on Chris' phone (No AT&T signal inside the house, how convenient) while I was calling Verizon customer support with an iPhone issue. Can you hear me now?

Then I came inside and tried to print a document to my HP Deskjet 3930. It jammed up of course and I had to sh@t can the whole operation (those who were lucky to know Grant Price will appreciate that line.)

I do love my iPhone. If I can't find it within my purse in under 30 seconds, I start to sweat. Literally. It's like a child to me. It connects me to my work e-mail, Facebook, Internet searches are a stroke away. (Today's Google searches included "How much to feed a goldfish" and "What to do if your goldfish is swimming around like crazy". I swear that fish is trying to get my attention.)

But truly, my iPhone helped save Jude's life. When he was 15 months old, I was home alone one morning. Chris was on a work trip. Like a typical morning, I had gotten up around 6:30 or 7:00 am with Lucy and Jude. They were both snuggling in bed with me. The cartoons were on. I was checking my iPhone. 

Then suddenly Jude jerked. He arms when out stiff and his head tipped to the side. It lasted a few seconds. Then it happened again. I knew something wasn't right (thanks to my incredible mother's instinct I'm sure - insert sarcasm here). I picked him up and put him on the bathroom floor. And I started recording it. 

His arm waving is not a seizure. But at about :10 & :25 and 1:00 he has small seizures. Lucy is about 3 or 4 years old. You can hear her so innocently asking Jude to say cheese. It about breaks my heart. I waited until Chris got back from his trip to tell him that I thought Jude had a seizure. He said no way.  So we starting recording every one. And we showed doctors and anyone who would look at them. Was it something wrong with his eyes? We started calling it his "tippy head." No one called them seizures. Not even his doctors. 

Fast forward three months. We have been seen by all kinds of eye doctors and neurologists. Jude was admitted to the Children's Hospital for an inpatient EEG. We wait for days in a tiny room (cell) for him to have a seizure so they could record his brain. Chris slept in the bathroom. The three of us waited. And waited. 

Finally, they ordered an MRI. We unhooked Jude from the EEG. We took him for his first stroller ride of freedom. And you guessed it. He had a major seizure right outside the room. He was not hooked up to any equipment. We got nothing. This video is about 5 minutes later and he's still having short seizures. It's funny to see the "old me" in this video. I had no idea that my life was about to completely change. 

Right after this video was taken, I cried in the bathroom alone. It was first and only time I've really cried about Jude's health. I was so sad, mad and disappointed at the whole world. Luckily, Jude has been seizure free for almost two years. He is on a miraculous drug called Keppra. 

iPhones are going to help families and the medical world, especially for those families with epilepsy. We take videos of any unusual behavior, send them real-time to his specialists and they call us with opinions on what to do, what medicine to change, etc. 

In hind sight, it's probably better than flying cars. At least for this family.

So I will end with a cinquain poem (click here to write your own):

iPhone 
Tiny, fragile 
Always close by 
Like a third child 
Life-saver

Today's the day. Tuesday, Sept. 4, 2012. I got so mad that I started a blog. Enough is enough. I'm dealing with some health stuff personally (more to come about that in a future post). And Jude was suppose to go back to UNI's preschool this morning and then to St. John's preschool this afternoon. Lucy is at school all day. I was suppose to get some work done via my home office.

The drop off went great. I came to pick him up at 11:30 and he's crying. Jude doesn't cry often (he throws a fit, says no, no way, etc.) but a real cry that I knew meant he was in pain. He wouldn't move his left arm. We got home. He wouldn't eat. He wouldn't drink. He just has a floppy arm and was still crying. We've been to urgent care dozens of times with this issue. 

I'd had it. Jude has other medical issues (more about that also in a future post), but the daily grind of a kid who can't really take care of himself/keep himself safe/gets constantly hurt put me over the edge.  I added "dislocated joints" to the continued growing list of symptoms in my Google search for a diagnosis (today's black hole of about an hour of my life).

My cell rang. I almost didn't answer it I was so mad. It was Chris' sister, Brenda. When I told her what was up, she said her kid had this thing called "Nursemaid Elbow" and it ran in the family. She said there was a way to fix it. 

Like a good mom, I Googled it. I watched several people (a few of whom were healthcare professionals) showing a technique to fix said problem. They said it couldn't harm them as long as it wasn't broken. So I tried it. Nothing happened. I watched a few more videos for inspiration. I was a little firmer, and pop. The ligament in his elbow realigned. I said, "Better?" and he said, "yes!". I waited a few minutes and he wasn't crying, but he still wasn't using it. Then he whimpered again. I tried the technique and his wrist popped. Complete success! He started using his arm/hand. (Thanks Brenda and Jimmy!)

Afterwards, I called Chris. He said any good mom would have definitely Googled a technique and tried it at home (insert sarcasm here). That's when I said, "Today I was so mad I almost started a blog." Two hours later this gem showed up in my inbox. Thanks babe. 

I'm going to try to end each blog with a Cinquain Poem (that I learned by reading Junie B Jones to my daughter):

Lemons 
Bitter, Bright 
Squeezed Fresh Daily 
Lemons Turned to Lemonade 
Life

And one more link: SLIDESHOW: What A Woman's Bad Day Looks Like, According To Stock Photos