today was a good/not awesome day. the good parts included taking bryce and addie to see cars 2 and having lunch with a friend while justin napped...watching the babies read to justin...finally getting a work out in...getting my fixed car back...sending bryce to swim with his tball friends...getting the MOST AMAZING pictures EVER (i canNOT wait to share them with ya'll)...taking care of my number one man...getting our travel itinerary sent from the most generous family in Boerne...and getting some one on one time with Justin in the afternoon while Katelyn was here.
The not awesome part of they day included his doctors appointment. The muscle biopsy (remember the thing that i almost had a heart attack while they were doing?? he had to be under during that procedure and it broke my heart)...came back showing that there is both muscle inflammation and muscle shrinkage or muscle atrophy (warning...do not google this). Long story short...bad news. They may have to do another muscle biopsy where they would need to take a larger chunk of muscle. I am not sure I could handle that again...and my precious husband? I just cant stand it!!!
The scleroderma is showing up and rearing its ugly head around. Please pray it away. Pray that scleroderma right out of Justin's body. NOW!
His CK levels have not gone up...but they sure have not gone down. Stupid.
His doctor doesn't want to change anything until he gets to Cleveland. He has corresponded with the Cleveland team several times and they are all anxious for Justin to be seen.
Our flight leaves on Wednesday at 11:20am and we will arrive in Cleveland around 5pm. We are so sad about the circumstances...but are looking forward to an adventure together. We truly are best friends and can surely find some way to make this trip fun!!
Please pray for Justin's pain, inflammation, medication side effects and his precious heart during this time. This is the time that he needs to feel more loved than ever...how lucky am I that I get to fill that number one spot?! I am so thankful for our 3 silly as a willy baby boys that make us a complete family. With all the love that is being poured over us right now...I just cant imagine needing anything else in the world!!
thank you for your prayers...and if you are wondering what devotion we do over here right now...we read jesus calling by sarah young. its amazing and continues to speak to our hearts each day. you should get it...then you would always know you are reading the same thing we are :)
(thanks marci!!))
xoxo
the macs
