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Wednesday, August 24, 2011

.A Few Answers & More Questions.

Thank you for the prayers for Jamesy's appointment, as I said yesterday, they carried us. The phone calls, messages, and emails were the cherry on top. Thank you. I have no idea how people survive without the body of Christ.

Monday was a loooong day. Jamesy was a trooper. We were so proud of our brave, little, brown eyed boy. Jamesy had appointments with three different specialists. They were each wonderful and knowledgeable, but each hold slightly different opinions. Opinions which we are still sorting out. The following is a very brief summary of what we were able to decipher at this point.

Jamesy may or may not have Septo Optic Dysplasia. Confused? Yeah, so are we. {sigh} Let me back up and walk you through what we gathered from each specialist.

The Pediatric Neurologist: We brought the CD of Jamesy's MRI and the results with us to the children's hospital. The neurologist looked at it and told us that the MRI was of inferior quality, and that he could not conclusively say that Jamesy has Septo Optic Dysplasia. (This was good news to us! Fantastic, excellent - almost miraculous news in our book after walking around heavy hearted for two months thinking our precious baby had this potentially scary disorder!) He suggested that the radiologists at the children's hospital take a look at the MRI to see if they could give a more accurate picture and diagnosis. The neurologist examined Jamesy and performed a few tests on him. He said at this point Jamesy's issues are not neurological - praise God! However, if Jamesy does have Septo Optic Dysplasia this puts him at a higher risk for developing seizures and learning disabilities (there is no guarantee that he will or will not develop them), so if those were to present themselves we would need to once again pursue help from a neurologist. He did suggest that we have Jamesy evaluated by a pediatric neuro-opthamologist, as he thought that would provide valuable insight into Jamesy's case.

So, we walked away from that appointment on cloud nine with the thought that Jamesy may not even have Septo Optic Dysplasia afterall. We could not have imagined better news to start off our day with.

The Pediatric Opthamologist: I was not really expecting much from this appointment. After all we had already had Jamesy seen by our own pediatric opthamologist closer to home shortly after bringing Jamesy into our family. She had told us that Jamesy's vision was perfect, but that his optic nerves were underdeveloped. What more could we learn?

We learned that Jamesy's vision is definitely not perfect. (Yes, he can see!) However, he will most likely be diagnosed as legally blind. He has very little if any peripheral vision and probably poor depth perception (which I had begun noticing here at home), and he does have the underdeveloped optic nerves. He has definitively been diagnosed with Optic Nerve Hypoplasia due in part to the underdeveloped optic nerves. Jamesy also seems to have some strabismus. At this point in time glasses would be of no help to Jamesy, but in the near future they may provide him some vision improvement. The doctor reassured us that although Jamesy is definitely visually impaired it is not likely he will ever be a candidate for a walking stick or need to learn to read using braille. He was very honest with us in saying that is is highly unlikely that Jamesy will ever get a driver's license, though.

Jamesy suffers from shoulder and neck problems because of the use of his null point (the visual angle in which he positions himself to see best. Jamesy sees best with his eyes looking up while hunching his shoulders and dipping his chin), so the doctor would like to discuss the possibilities of surgery to help with this at our next appointment (which is scheduled for February). He said that he would definitely recommend eye surgery for Jamesy before he entered school (and possibly sooner because of the strain on his neck and shoulders). The surgery would help with both the strabismus and the null point, but surgery will not be able to correct his nystagmus (the almost constant back and forth movements of Jamesy's eyes) - that is a life long disorder that he will carry. We were told that Jamesy's nystagmus and underdeveloped optic nerves were pretty moderate - meaning the doctors had seen worse and better.

We LOVED the pediatric opthamologist and his Resident (who reminded us so much of my brother Ben that we instantly felt a connection with him). We felt as if we were finally really listened to and given very knowledgeable answers. The opthamologist was not able to look at the CD of the MRI that we brought with us, but regardless of that he indicated that he does think that Jamesy does indeed have Septo Optic Dysplasia. Confusing, right? We are guessing that he has seen enough cases similar to Jamesy's to have a pretty educated guess about the diagnosis.

So we walked away from appointment number two feeling as though we had learned a ton but feeling very confused at the same time.

The Pediatric Endocrinologist: This was the appointment that I was the most nervous about, because I knew that the hormone part of Septo Optic Dysplasia is what could get really scary with that diagnosis. The doctor was young and quirky and easy to talk to. He was especially interested in Jamesy's growth pattern, and concentrated on that. He checked Jamesy over and was very positive in that Jamesy's "male parts" are all appearing normal. The sex organs and hormones can be very severely affected with this disorder. The doctor ordered a full pituitary gland work up and hormone check to be done on Jamesy. We have decided to do this closer to home. It has to be done by a hospital who draws on pediatrics, and it has to be done by 8 AM in the morning because some of the hormones that need to be checked naturally peak at that time of day. This is not something that we can get done at our hometown hospital, unfortunately, so we will be making a little drive. We really wanted to squeeze this in this week before school starts on Monday, but it is not looking probable. The doctor suspects that the blood work is going to come back normal because of how Jamesy has grown since coming home. However, he did say that Jamesy may not follow a textbook being that he is from Ethiopia. So, we wait and see. In my heart of hearts I feel as if the tests will come out fine. We meet with the doctor again in February, and we will hear the results of Jamesy's blood work shortly after it is submitted.

The endocrinologists took our CD of the MRI, and he will have radiology at the children's hospital look at it. However, he believes strongly that Jamesy will need to undergo another MRI to get an adequate diagnosis and to very carefully look at his pituitary gland. We were advised to get this done at a different hospital than the one we originally went to. I cannot even imagine Jamesy going through an MRI again, so I am praying that somehow the radiologists will be able to gather all of the information they need from the "inferior" MRI results we gave them.

Jamesy still needs prayer. We still need prayer. I had no idea the toll this had taken on our family until this week. It is really hard to know that my child has something wrong with him that is so outside of our control. It is hard not knowing what the future holds. It is difficult seeing other people's healthy, whole children. It is tiring putting on a happy face and trying to appear normal so as not to suck another person into our drama and melancholy. To allow other people to break with us sends us over the edge, so we put on the smiles and push through. Then add on top of that adoption stuff that we daily work through. We are exhausted and broken, but we are hopeful and feeling positive about his appointments on Monday. We long for normalcy once again, but more than anything we long for God to be glorified in our family.

And for the record, I feel as if this must be publicly said, because it is something I have actually been asked - YES, 100 times yes, if we had known Jamesy may have a potentially scary disorder we still would have adopted him. He is our son. Period. This will sound harsh, but until one adopts I suppose one cannot fully understand this - that question is like me asking a mother or father with a sick birth child, had you known your child would be sick would you have still birthed her?

Of course our answer is and always will be yes.




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