Just Follow the Yellow Brick Road

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