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Monday, October 6, 2014

Heart & Liver & Arthritis Update

If you haven't seen Cliff lately here's a funny photo of him that our sister Tricia took.  Don't be fooled by the scowl.  Cliff is a happy, playful kid.  He's also has a sense of humor.  Thus, when he was asked to smile for a picture this was the result.

Here's an update on our fun loving kid.


It is hard to believe that Cliff had open heart surgery almost a year and a half ago. Due to the number of procedures Cliff has undergone since heart surgery it makes that year and a half seem a long ways away.

By and large Cliff seems so much better than he was at that time. He has had so much more energy and his growth has accelerated. In his heart checkups the doctors describe his heart as doing great for him, although it is still high for a normal person. He has another follow-up with the cardiologist before the end of the year and we expect him to continue with visits every 6 months for the ongoing future.


Cliff's liver has been all over the place in the last year.  After having the partial biliary diversion we described earlier in March, Cliff's liver numbers have been decent. Cliff has been a lot less itchy which is the primary symptom we are seeking to avoid.  It hasn't been perfect.  We've discovered that little illnesses, like colds, dramatically reduce the effectiveness of this procedure for a few days.  But on the whole, Cliff's overall comfort has been great.  Now if we could just keep him from ripping off the bile bags.  He just thinks it's funny to rip off the bag and make messes.  I guess that comes with being two.


In what is a new development, Cliff was diagnosed with juvenile arthritis this summer.  It all started when he fell and hit his arm.  He seemed like he was a bit slow to heal from that and acted like he was stiff.  After a few weeks had passed Cliff's arm was so stiff that he started holding it like it was broken.  We thought he had fallen again so we took him in for a few x-rays, and ultimately an MRI. All these revealed no breaks in his bones.  But the orthopedic surgeon reviewing the MRI ordered blood tests and told us to consult with a rheumatologist.

Apparently arthritis is normally diagnosed over time period and several visits to a rheumatologist.  Cliff's was diagnosed in about 3 minutes. He did some manipulations of all of Cliff's swollen joints, including his wrists, fingers, shoulders, elbows, knees, ankles, neck, and probably even his hips, and told us that Cliff needed some help. Although Cliff's liver condition gives him a bit more risk when it comes to medicine, he had gotten to the point where he didn't want to stand up in his crib because he was too stiff. It was hard to see him like that. But it made the decision to go on medication simple.

Cliff now takes Enbrel once a week and it has made all the difference. No word yet on if he'll grow up to be a multimillionaire golfer, but we'll take the playful happy kid we know.

The one downside to Enbrel is that Cliff has become so mobile and is feeling so good that he climbs up and jumps off of everything. He's become hard to keep track of even just inside of our house.

But in the end we're happy to have him. He is such a neat kid. He brothers love him and he loves them. He brings a wonderful spirit into our home. We consider ourselves lucky to have the fun family that we do!


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Huge Thanks

We are so grateful for all the wonderful people who have helped us, are are helping us through this experience.

Our families have been great support systems for us and have given so much of their time and their talents to benefit Cliff.

We also have so many good friends who have given way more than we could have possibly imagined, sometimes a moment's notice.

To everyone we offer a heartfelt thanks! We really, truly could not do this without you.

An Inspiring Thought

Here's one quote that inspires us.
"There is no growth in the comfort zone; there is no comfort in the growth zone."
If I could figure out who to attribute this to I would, but the Internet isn't quite sure who said it.

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