When you pass through the waters...

At the beginning of June, Cody had his 6 month check up at the NIH. We are still waiting on genome sequencing. We discussed the other kiddos and my issues a bit more in depth and increased his Actemra to weekly for the summer to see if it helps. We are set to go back in December.

Lucas has been complaining more and more about his left hip, leg, and

foot. Looking back his MRI done in 2007 and the fluid there... means

another MRI might be in his future. 

Hannah has struggled with sore joints after dance classes ~ we now have 

quite a collection of knee & ankle braces and lineaments & salves. Ice 

packs seem to be a way of life here.

It frustrates me to no end to feel helpless with just comfort measures. 

Hannah started Humira this month. I would have rather just skipped 

it... I remember Humira with Cody. It stings and burns even mixing it 

with lidocain. She has been a real trooper but its hard. Luke is doing

better than I ever would have imagined with shots. I am going to need

a small refrigerator just for meds.

The past couple months have been fraught with challenges (hence no post

recently).There is a verse that has reverberated in me though~a promise that we are not in this alone. Isaiah 43:2 When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.

I am thankful that Jesus is right there with us.