We got our hopes up a little bit too high... blood work today showed that Henley just is not stable enough to move home to SW North Dakota, not even for a short time. She was started on neupogen today. It's a shot that we give her. It's unknown how frequently she will need these shots, every day, every other day, once a week... we just don't know. Her blood work will be checked again on Wednesday and we will re evaluate then.
We also learned information from her skeletal survey (a full body X-ray). The results show that she has many of the markers typically seen in patients with Shwachman Diamond Syndrome. Most notably are where her femurs and hips attach. At some point in the future she will need surgery to correct this and help her walk normally without pain.
In some ways today was harder than the day she was officially diagnosed. I think it was harder for me, because I was so looking forward to going home, seeing the twins and being in our house, on our quiet dead end road. I know it was hard for Kyle to head home, once again without Henley and I. All we want more than anything right now is to have our happy little family of 5 under one roof. Please pray God will give us that soon. We are trusting in Him.
