Busy Week Genetics/Flagstaff

Busy week, Monday was a trip to Phoenix to see the geneticists and so I will start there. We didn't end up meeting with the geneticist that I wanted Landen to see our insurance switched it last minute. There was a physical exam and family/medical history plus a ton of questions. So pretty much our life. After a review of the labs that Landen had done last month he explained to me that Landen had a Peroxisomal Disorder... so nothing new. A lot of explination into what it was.. blah blah.... heard it all before. But he was unwilling to diagnose him with IRD... yet... even though I have had two other doctors who are 100% sure that is what it is. But since it is the geneticist who gives the final "official" diagnosis we will do it his way. So Tuesday I took Landen down to the lab and had blood drown and sent to Baltimore to get tested I expect the results to be back in about two weeks telling me what I already know Landen has IRD.

So now to the better part. Wednesday we left early to drive to Flagstaff to meet with a family that has a daughter like Landen. She is only one month older then Landen! Its a miracle to be able to even meet a family with a child with IRD let alone one that is almost the same age. Her name is Ezra and she is a beautiful little girl... so much like Landen. They like the same toys, they play the same games, they are the same size and they even have the same favorite book with the same worn out pages. It was interesting to watch her play her habits, attitudes, expressions and sounds remind me of Landen! They even look alike they have the same facial features that are common with this disease. It was even better to get to know the family someone who is walking in our shoes, someone to compare notes and talk about our concerns and our journey so far. They can understand our situation and frustrations like no one else can. I'm sure that our families will be a great help to one another. Thank you Jeremy and Joleen :D We stayed the night in Flagstaff and ended our visit with hiking in the Grand canyon!