Hey Jude!

February 28 is Rare Disease Day. 

Kyle & Heather have been offering tshirts to friends and family 
to benefit Polymicrogyria Awareness.

This year,  the back of the shirt said "na na na na Hey Jude" like the Beatles' song. 
The Luck basketball team wore the shirts during warm ups for the remainder of the season.

So, what's new with Jude? 

Little Jude is doing quite good.  He had some genetic testing done and found out that he has a very rare gene. He is only 1 of 9 known cases in the world and the first-ever for the Mayo Clinic. They believe this rare gene probably caused his polymicrogyria. 

He has not had pneumonia since last April and since last November he's been doing his respiratory therapy only once a day instead of twice. He's been able to start eating more food that is juicier, like peaches and grapes. Peaches are his favorite! He's able to drink about 4 ounces of water a day now, from a straw, if Mom or Dad are present,  and Jude is more and more verbal all the time.

He's really a little sports nut and always wants to know if the Badgers won. 

At his brother's sporting events, he is glued to the action for the entire game without any encouragement from anyone.

He's quite a little character and puts a smile on the face of everyone around him.

The encouraging thing for me lately, is that I've seen the parents have to reprimand him a few times so he is moving from the special, hands off, sickly child to a normal little boy!

That is progress.

❤️