.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.

.Holding my Breath.

I've been holding my breath since bringing Jamesy home - without really realizing it. I have been waiting for his first appointment with a pediatric opthamologist here in the US. I have been watching his every move, "testing" his eyes by standing across the room to see if he can mimic my facial expressions or hand gestures - he can. I have been tracking the movement of his eyes - Are they slower today than yesterday? Do they speed up only when he is tired and distressed? I have been observing him observe - and all while holding my breath. I watch the way he dips his chin down in order to steady his eyes, and the way he brings objects really close to his face to study them. I see him pick up cream colored cheerios off of his cream colored highchair tray with ease, and my heart skips a beat. I notice that he is making eye contact more and holding our gaze a little longer, and it all seems too good to be true.

As Thursday - the day of his appointment - approached I began to second guess what I have seen. Am I just imagining him being able to see so well, because I want this so much for him? When we took him for a well-child and thorough exam the first week home, his doctor had told me that Jamesy was indeed not blind. But he did not admit to him being able to see more than shapes and light. But to me, who has been observing Jamesy's every move, I knew he had to be seeing more than that. Yesterday, we all piled into the exam room. It is funny how adding just one more child made me feel as if my family was a parade marching down the halls of the doctor's office. We all went. Cadi and Scotty did exceptionally well sitting quietly in the waiting chairs watching their brother go through his appointment. I was a proud Mommy, although deep down I know that it was only the grace of God and nothing that I had done. Jamesy had to have his eyes dilated twice. We were told that people with dark eyes have a harder time getting their eyes to dilate. This proved true for Jamesy. I almost teared up as my older two sat watching Jamesy get his drops whispering to him from across the room It's okay, brother. You're so brave. How have I been so blessed with these children? I cannot imagine life without any of them.

I liked the doctor, although she seemed very casual about Jamesy's eyes. I almost wanted to shake her and say Lady, don't you understand? He is a miracle sitting here in my lap! My son was BLIND only months ago! I restrained myself and was calm and collected on the outside. It was never even a question to her that he could see. She preformed some tests on his eyes, which was really fun to watch being done on a baby. Then she calmly said, as if it were no big deal, His vision is excellent.

His vision is excellent.

My son whom was blind back in September was now being examined by an opthamologist who casually pronounced his vision to be EXCELLENT. Oh glory to God! She did go on to tell us that Jamesy indeed has nystagmus. (I was rather pleased that my diagnosis had been correct, but at the same time sad that I was correct.) Nystagmus will affect him for the rest of his life, and there is no cure. There is a chance that as he grows his nystagmus will improve or that it will worsen along with his eye sight. There is no way to know right now. We have no promises that Jamesy will drive in the future or play organized sports, etc., but we have no guarantees that he will not either.

The doctor was impressed that Jamesy has already discovered his null point - Jamesy's nystagmus ceases when he dips his chin down and fixes his gaze ahead. Anyone who spends time with him will notice that he does this. She told us not to discourage him from using his null point, as it is a good thing. Sometime in the future we can opt to have a surgery for him that would make his null point straight ahead and eliminate the chin dip for him. The doctor also said to allow him to hold objects close to his face, when he does this the nystagmus also stops for him, and his eyes converge allowing him to focus. It does his eyes no harm to be looking at things so closely, as this is actually how his eyes were created to work together.

The only concerning part of the whole appointment is when the opthamologist examined Jamesy's optic nerves. She said that they are very small, and we need to figure out if something more is going on. Jamesy will need to have a cat scan done. This will determine whether or not the pituitary gland and midline of the brain are being affected and if his nystagmus is actually a result of this or if his nystagmus is a stand-alone condition. Growth deficiencies are generally the first sign that the pituitary is affected, and Jamesy does have this. We had been told and assumed it was from his severe chronic malnutrition. I am praying that is still the case. I came home and googled stuff about optic nerve diseases and wished I had not. Now I am trying to rest in the hands of God. Look how much God has already done for my Jamesy!

So now we wait to hear when his cat scan will be scheduled. Jamesy does not even need glasses. I can hardly believe this! He will be seen again by the opthamologist in four months - on his Daddy's birthday actually! Until then I am going to continue to research all that I can on nystagmus and reach out to other people who have it. It is my blessing to have been chosen to be Jamesy's Mommy, and I love that I can advocate for him.

Overall we walked away from yesterday praising our great God! On the way home Jim and I would periodically look at each other and break out into mile-wide grins exclaiming Excellent vision and laughing!

It is all too great, too wonderful.

“Go home to your own people and tell them how much the Lord has done for you, and how he has had mercy on you.” Mark 5:19