Barons April 29th

We had spring break a few weeks ago and tried to actually do some fun things since it was my first week without a “real” job. Some fun things we did were have a pizza and paint party at our house, go to an Easter party at Grandma and Grandpa’s house, go swimming at the Provo Rec Center, and go to the zoo. Here’s a photo from the zoo –

Tyler

Tyler had a birthday on Saturday and turned 19th. He is working at Arctic Circle and usually works from 12 to 3 pm Monday to Friday.

Kayla

Kayla has enjoyed singing in the Millenial Choirs and Orchestra and is excited to sing at Abravenal Hall this week.

Ruby

Elder Christopherson came to our stake conference, which is very unusual even living in Orem, Utah. You would think living so close to the prophets and apostles we would see them more often but it is very rare. Kayla and Ruby got to shake his hand. Here is a photo of Ruby –

Our appointment with the geneticist finally came. He did a physical exam on her and she scored an 8 out of 9, which qualifies her for a Hereditary Connective Tissue Disorder diagnosis. But before he officially diagnoses her with that he wants her to take a genetic test, which he says has about a 10% chance of finding another cause of her symptoms. It’s also to check to make sure she doesn’t have a rare variation of the disease, which can cause heart problems – so we’re obviously hoping that doesn’t show up.

We are also going to another doctor next month to see if she can get an official Mast Cell Activation Syndrome diagnosis and get some help for that. That’s what I think I have, which basically means you don’t digest histamines very well.

Once we get the genetic test back in about eight weeks we are hoping he will give us a referral to get some custom orthotics for her knees and ankles, which he said the insurance should cover and come with a lifetime warranty. If we can’t get them without going in for a visit then we have to wait until November for her next appointment. It’s just a little frustrating how booked he is. . .

Ruby and I have had both of our SOT infusions for Lyme disease. We are told it can take up to 3-4 months to tell a difference. Ruby said she can’t really tell anything yet. I think my joints aren’t quite as stiff as they used to be, but it’s not enough to make an amazing difference yet. So we are going to do our best to not let this slow us down and hope for the best.