Tuesday, June 21, 2011


Ok everyone...We have a date for Cleveland. It is not really when I wanted to to be. But...it is what it is.
We will leave NEXT Wednesday the 29th. He has 3 appointments set with 3 different specialists on the 30th. It was a pretty HUGE ordeal to coordinate with 3 top specialists offices to find ONE day for them to see him. At first they told us end of July. NOPE. Then they told us that we could go ahead and come if we thought it was an emergency...but we couldn't be guaranteed to see these specific doctors. These 3 specific drs are the top in their specialties. One for scleroderma, one for polymyositis and a pulmonologist for the fibrosis they found. I am disappointed that we are not going sooner...but can see that God's perfect timing made these unavailable appointments happen.
In the meantime we need to continue praying that the pain patch will work. He said today that he feels like it has taken some of the soreness away. Each day he dreads waking up and feeling what will hurt. His elbows, legs, arms, face and backside always hurt. Something new is swollen each day too. Today he woke up and the bottom of his feet are so extremely tender. Can you imagine? I just cannot. I just want it to all go away. An amazing friend from our Sunday School class offered to take our family portraits today. That sounded HORRIBLE to Justin...but he knows that it is important and something that we needed to do. He was such a good sport. I could tell he felt awful...but she made it super quick and kept him off his feet as much as possible. And did I mention...she drove four hours to do this for us? We are so blessed and thankful. The owner of Toyota of Boerne so kindly offered up his gorgeous home for us to do the shoot. It was VERY last minute (like we may have just figured this all out yesterday), but it was perfect and cool and comfortable to Justin (and um...lots prettier than our house).
My precious aunts and dad are on standby and ready to come watch this wild pack of boys we have. I know they will be in great hands and I know there are lots of others that will be waiting in the wings...ready to help when needed!!
For now, the doctors office seemed under the impression that Justin would not be there long. He would come in as an outpatient...see the specialists and get a new plan. We have all his medical records, most recent bloodwork, biopsy results and on and on...and will take all of that with us on a disk.
Pray that the chemo and ivig will continue to attack the yucky cells in his body and leave the good ones alone.
Justin is going to get better in Cleveland. I am pretty excited about telling that story when it happens :)

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