I know one thing for sure, we never have any lack of excitement around here!

First, we are having a great time in NC. Jenn, Skye and Grandpa were here for the weekend. We have been to the waterpark, the beach and the alligator farm. We even roasted marshallows!​
Now for the not so good news... The day before we flew here Alex got a few red spots on his face. We weren't sure what they were but we assumed they were bug bites. I checked with Dr. Koenig and she ok'd us leaving. Fast forward to Saturday, Mom and I started breaking out in red spots. We all 3 have chicken pox! Alex has also been having some "episodes" of repetitve blinking. I spoke to Dr. Koenig today. She is VERY concerned. If we were in Texas she would admit us to monitor him. Because I am here I am watching him very closely and will leave at the first sign of Alex not doing well. Dr. Koenig's main concern is that these episodes that she feels are seizures started around the same time of all of this. We are praying that Alex holds on so we can finish our vacation.

We will head to Houston a day earlier then planned. She will do an EEG and possibly an MRI and spinal tap.

Please pray for Alex. I will keep you updated.

Ali

We leave tomorrow morning... The craziness never ends! We got back the bloodwork we have beem waiting on. They found 2 mutations and 33 polymorphis​ms or changes on Alex's mitochondri​al DNA. The next step is to test my blood. If I come back with the same changes then it is conclusive that these are the changes causing Alex's mito. One of the mutations has been seen before which is important because it might help Dr. Koenig know which organs are more likely to be effected. We have to head back to Houston as soon as we get back from NC. We will sit down with Dr. K so she can explain more of this to us. We will also see the GI, immunologis​t and have the Gastric emptying scan. At that point we will make a definite decision on the surgery.

I will update from NC.

Ali

We are home!

We saw the GI on Friday. We are trying an additional medication as a last ditch effort to avoid surgery. We have also scheduled a test to be done. They are also trying to schedule yet another dr. appt with a pulminologi​st and a sleep study to see if his reflux is causing any breathing problems. We follow up in August. By then the GI will have spoken to our surgeon and we will make a final decision.

It was nice to see Mariah and the girls and meet Mariaj's mom, Carol. We all shared a hotel and it was just really fun. Of course we are all exhausted. Mariah and I were like two little girls having a sleepover. We talked into the early morning every night. We can't wait for October to see you guys again.

Alex and I have a quiet day tomorrow to unpack, do laundry and repack, then we head on vacation! We are so excited. We are flying into Raleigh and driving with Dad down to Shallotte to see Mimi and PopPop. Aunt JennJenn and Skye Skye will also be there for a few days. Dad and Jenn and Skye will all leave after the weekend. Alex and I will be at Mom's until August 7th and then back to Raleigh for 2 days before we head home.We will see Dad again the first wekend of August as he heads back to myrtle Beach. This is a much needed vacation for both Alex and I. Going to NC is always such a good break from medical stuff for both of us.

Please pray for safe travels.

Ali