It is discouraging to baffle some of the best doctors in the field. Yet that's what we seem to do. The past year Cody has had more pain and more
fatigue. He also has probably had more fevers as well but since he doesn't chart his temp when he feels bad or track things it's hard to see a pattern.
Hey he's in college, this is a self-advocacy skill he needs to start using, I am not there. Since he has been on almost every biologic at this point his team
is at a loss. Because he is having more issues with his hands they did
x-rays of them and of course more blood work. Only 10 tubes this time.
They will be contacting him for another visit or at least with a plan in the near future.
His body habitus and the stretch marks on his back came up again. So
they are referring him to a Doctor at Hopkins, she is a specialist in Marfan's.
And that was our visit in a nutshell. We came back to the Children's Inn and
I collapsed on the bed and slept for 2 hours. I tend to sleep when I'm overwhelmed, well that and cry, and to be honest I did both.
While checking my email at the Inn, I received an email from Hannah's
rheumatologist. He is concerned that some of the symptoms she has been
exhibiting breathlessness, low bp, sometimes dizziness - although she is
very anemic may not be from the anemia and he would like her to see a cardiologist for a consult and possibly have her pulmonary function tested.
Considering we just put her on a plane with the youth group for a missions trip in the Dominican Republic this tests my faith.
While writing this hematology called to schedule an iron infusion because
her levels have again dropped. So there's that ... oh and I start work again on Monday for the summer
session.
Yesterday after returning from clinical the verse that was pounding through my head was Proverbs 13:12 Hope deferred makes the heart sick and I was definitely feeling heartsick. But the Lord gave me this one to chew on instead Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
Being strong and courageous is a challenge to be sure.
