Yesterday's trip was somewhat disappointing. We got the diagnosis we thought we would, frontonasal dysplasia with some craniosynostosis. That was Fine. The frustrating part was insurance wouldn't also let us get Kira's CT Scan the same day. That's the test the ENT and Craniofacial team seem to really want to take a peek at. She will also have an MRI to see what her brain is up to mentally. The neurosurgeon also wants to check her spine, no immediate concerns,but with all her bone anomalies he wants to be sure we don't miss anything. Kira also had a hearing test and she has mild hearing loss and most likely will need tubes. Her tonsils look large, hence her snoring, and the ENT wants to see the CT before he decides what we will do about those. Denver Children's is an amazing hospital and we loved all the people. Our German ENT even spoke a little Russian which helped a lot. Between his Russian and ours and, of course, charades we did fine! Kira is amazing.
I will be honest and tell you the day was long and at the end when I heard come back and see us and the audiologist and opthomologist and they want us to see the geneticist in a few months....I was completely overwhelmed. Those are the moments I ask God if He is sure He picked the right people for this job? A wonderful friend reminded me this morning that the tests are a lot, but they have to be done. And with those words I put my game face on and made phone calls to get her appointments rolling! God has given us a wonderful angel at Denver hospital to help us coordinate and we will get through this time of testing.
It is overwhelming at first, but it does get easier. These are diagnostic tests to see everything and get a baseline. WE attended the craniofacial team every six months for 1 year and then 1X a year. Now that we know what is going on and what they can and cannot fix we no longer see them. In fact Dennis does not need to be seen for another year and a half. It does get much easier as you get familiar with things. Big hugs!
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