Genetics Adventure.. FINALLY!

Today was a really... REALLY long day for us!

So, up at 8 and on the road at 8:40 towards Grand Rapids for our Genetics appointment that i've been waiting for, for months!  On the way to get gas, my check engine light went off (YAY. It was on for a couple days.. made me nervous.)  We rolled into Grand Rapids after tons of fun construction to drive through, around 10.  Woohoo I'm a half hour early! NOT. I got lost. Not really lost.. but when you don't know a city well, it's hard to find the exact address, along with someplace to park while being rushed by 4 lanes of traffic. SOFUN. So, we actually get to the office 5 minutes late.  Sit for a half hour. Go into one room and do weight and wait 10 minutes till the next room is ready. Sit in the next room for a half hour doing all kinds of genetic counseling.. asking questions.. family tree.. ect.. then finally we met the Geneticist! 

I liked him, a lot. He was familiar with CVS, Mito, and AND Hallermann Strieff! He wants me as his patient too, which is cool since I don't have to go to Detroit now.   He's sure Max has a Mitochondrial Myopathy, and says we shouldn't need a biopsy. He wants us to see a neurologist because he wants to be sure if it's neurological or only muscular. We did a blood test today to rule some things out, make sure all his genes are there and none missing.  Once this comes back in a month, step 2 will be to do some more intensive gene testing. We are hoping to narrow down quite a bit so that it's cheap. Thankfully, MIchigan works with a few big labs, especially one in Texas that will accept our insurance at least with a small copay which is better than 10,000.   He also told me that, Halllerman and Mito have nothing to do with eachother which i was interested in.  He has some good friends who are high up in a craniofacial center in Seattle that he's going to mention me to about doing research, since they have yet to find the gene causing hallermann strieff syndrome.  So we wait a month, meanwhile get a referral for nuerology up at Devos (GR).
Went to get blood taken in another office.. thankfully it was pretty quick and not TOO painful. Max got to pick his bandaid and a prize. 

We left there pretty satisfied (and hungry) and went downstairs. They have a few restaurants and we ate at Smash Burger. I've never been to one but they make a good burger! 

Time to go home. Hour 15 min drive. Maybe that burger wasn't a great idea. Driving through construction with awful tummy pain... need a potty... soon soon soon.... (TMI Sorry!) finally get passed construction 15 mins from where we need to be next and I stopped at a BP and rushed Max into the gas station to find a bathroom. Let me tell you, when you have an Emergency bathroom situation it is NOT convenient to have a child with you. Especially one that isn't able to hop out and run with you!

I made it! Ahhh. Got some drinks and Max found a Hershey's when I had my face in the cooler.  Get going and off to our next stop.  

We got to South Haven thankfully about 15 minutes before our next appt. Orthopedics for new braces. Got stroller, ready to get Max out of the car and he is COVERED in chocolate.. baby wipe bathtime quickly... can't get his shorts clean.. must remind doctor that it's not poop..

Got braces ordered. He wants us to see a pediatric orthopedic surgeon about Max's left food. He has club foot. After all this time SOMEONE finally told me something. He said that it's not looking like its going to fix itself because of where its not moving correctly.  Braces will still help but he may need surgery to release some of the pressure and stiffness in the foot. Note: referrals now needed.. neurology and Pediatic orthopedic.. thankfully all of this is in the same place.

That's about it for our eventful day. I"m going to now sit here and be lazy in my AC as I've walked way too much today and am pooped.