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Friday, April 15, 2011

.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




Heather said...

I read an article the other day about a member of the Black Eyed Peas, not but the other african american guy. He has nystagmus as well. It was a great article about his life and triumph to where he is today :)

rameelin said...

When you texted me yesterday I was so excited. My first thoughts were, "He will play softball, write letters, drive, see his own children be born...!!!"...because those are all the things I have been able to do that the Dr's told my parent I may not. It's amazing! My null point is up, btw. Like when I drive or am focusing, my neck is turned slightly upward. My eyesight has improved since childhood because God is good--I have no doubt Jamesy's will do the same! Love you all!!!

mini and brother said...

I'm crying and soo excited for yoU!!

Jessica Kramasz said...

Yay!!! What wonderful news - God is so good.

Bethany said...

Love this post! Tiffany- I am convinced, Jamesy needs to be a swimmer. I am so glad that his vision is excellant. I will continue to pray that his eyes will heal. Much love to you an your family!!

Tammy ~ Country Girl at Home ~ said...

Praise the Lord, is all I can say! I know no matter what your path with Jamesy...his life is the Lord's and He has great plans for him!


brandy said...

PRAISE THE LORD!!!!!!! Rejoicing with you guys!!!!!! God is GOOD!!!!! :)

Unknown said...

That is incredible!

Christy said...

PRAISE THE LORD! Where did you get that wall art? It is beautiful!

Kim said...

Praying for your sweet boys eyes! Our younger daughter has had many eye issues, as well. She is actually having a third eye surgery on friday.. this time, for Exotropia. She has had an MRI done also, to rule out any issues with her brain. If you ever want to talk, please contact me!

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