It has been a week since Ryan and I saw the growth and development doctor. She has become the "ring leader" if you will of Ryan's care. She is the one searching for the right path for Ryan, for the right diagnosis, treatment, etc. I really like her. She is a very close friend of our pediatrician so that helps as well. So tonight I have finally found a few minutes to update everyone. We still don't have many answers. So, please don't think you are getting the whole story. And even when all of the biopsy results are back we probably won't have all the answers. In fact, we may never know what the future will hold for Claire and Ryan. This is a something I struggle with every day. I am a planner, I want a plan, to be organized. But I can't....I can't control or predict this. So I accept and enjoy, each and every day as best I can.
The other news from the Durham house is I have decided to resign from my current work position. It is possible I will return to work in the fall to an "as needed" pharmacist job at a hospital in town. But I'm not certain. I will be finished as of June 15th. My job, unpaid, has become the healthcare needs of the children. All together the children have 8 therapies a week and it is expected Ryan will have more in the very near future. We see at least one doctor a week and often it is 2 or more. Sometimes two or more in a day, especially during our "sick season" of October-February. I talk to nurses, support staff, insurance companies. As we search for answers and the best options for our children, I feel it is time to concentrate on them for a while. It is my hope that during the next school year things will begin to settle in and the healthcare needs will become less cumbersome. Only time will tell.
And I think it might be time to change the title of the blog. I shall wait until it is confirmed that Ryan and Claire have the same syndrome/disease or whatever it may be. But the doctors seem to think whatever it is they both have it, rare, unique or otherwise. So it may have to read Claire and Ryan both unique. ;)
And now, without further adieu I will end this post and get to the info you really want...results....updates.....
Hugs and prayers for you Martha! So sorry to hear you and the family are going through so much. We think of you often and we're here to listen.
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