On Thursday of this week, Daniel will be going to the Duke Eye Center to meet with a neuro opthamologist. We have been told that he will be there for 3 hours of testing, though I don't know what any of the tests will be. I do know that his eyes will be dilated and that is really about it.
I think 3 hours of testing could be hard for anyone. I know that having your eyes dilated is no fun. For our sweet little boy with sensory processing issues though, it is all magnified and compounded. It's going to be a hard day for him. I'm going to be taking things with me to try to help, but it's hard to plan for something when you really have no idea what is going on. (If anyone has suggestions, I'm open to hearing them.)
For those who may have missed an earlier post on this, Daniel has "prominent optic nerve pallor". This was seen at his last routine eye appt in Oct. She has referred us to a specialist to see if there is something going on. I've googled a little bit to find out more of what we are dealing with. Pallor is also sometimes called "atrophy". It also appears a little more worrisome that it is in just one eye.
I have to be honest - I'm scared. I try not to think about it much and that is helpful. (The Scarlet O'Hara method of dealing with things.) There are times though when I have to face it. I'm not trying to borrow trouble and thus try not to think on the "what ifs". I still find that I am fearful of what the future my hold for our little boy. Scared that there will be something. Scared that it will be another something "big". Again though, I don't dwell on it.
I know God is holding our little boy. I know He loves us. I know He is with us. It is really all I can hold on to right now.
I've been told that it may take a month to get the results back. I'm really hoping that is not the case! I would love to know more on Thursday. I really just want to hear that he is fine.
Thank you for praying once again for our family.
With love,
Leslie
P.S. I've been trying last night and again today to post pictures and am having troubles with photobucket. Not sure what is going on there, but am hoping it is fixed soon. If not, I may be posting somewhere else and will certainly update here.
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Dear Daniel,
ReplyDeleteA few years ago, my left eye froze in place. I was seeing double. It was very scary for me (and I was a grown-up!).
I had to see a lot of doctors. One was a neuro-opthalmologist at Jules Stein Eye Institute at UCLA in Los Angeles. I'm guessing it's probably a little bit like Duke where you'll be going. I have to tell you (and your mom) that worrying about what would happen at the doctor's offices was WORSE than anything that happened there. All of the tests they did on me were easy and none of them hurt (except for one little pinch).
They looked into my eyes with flashlights and magnifying glasses. They had me read letters on the wall. They asked me to close my eyes and tell me if they could feel it when they poked or lightly pinched me on my legs and toes. I had an MRI at one visit (it's quite loud but it does not hurt, and if you have to have this test they will give you ear plugs) and a CT scan (there was a very tiny pinch in my arm for that one so they could put medicine in a vein for the test). The MRI was longer (close to an hour). The CT scan was a lot shorter. The clinic staff made sure I was really comfortable the entire time and they were very nice to me. Inside the MRI machine, I prayed a lot to pass the time, and sometimes, I just focused on how I was breathing, in and out, in and out. And then it was over!
Maybe you can bring a small pillow or a favorite stuffed animal to squeeze. Some silly putty or a squishy ball might be fun to play with if you have to wait a lot. If I were you, I might take some materials for drawing and a book to read.
Your family is in my prayers -- am praying that the tests just fly by soooooo quickly and that the outcome is positive. ;)
Love from a stranger.
Penny
Leslie-will keep you and your precious boy in my prayers. Man-your fam has been slammed lately. Sending cyber hugs too! If anything-one way to look at it is to know that now they are pursuing it and will figure it out so that you all can take action to make the best of it (don't know about that pallor stuff, but I truly hope it is fixable). May the Lord lift you all up and grant you peace!
ReplyDeleteSheri
What's in the Box?
You have been such an encouragement to me Leslie. Thank you. I will be praying for you and your son.
ReplyDelete((Leslie))
Kariann
Dear Leslie,
ReplyDeleteYour prayers have carried me through tough times and now its my turn for my prayers to carry you and your precious Daniel. Keep clinging to Jesus and let Him love on you and just stay focused on His love. All the scary stuff shrinks next to His Great Love! Many hugs and prayers,
Christine
Penny – Thank you for writing and sharing your encouragement and experience with us! I appreciate all that you shared and will share it with Daniel as we get closer to the appointment. Thank you for helping to alleviate some of my fears and for your suggestions on the day as well. Thank you for taking time to write all that you did and also for praying for us!!!
ReplyDeleteSheri – Thank you for your prayers. You are right – our family has had a lot to deal with it seems. I’m hoping we are learning our lessons well and that through it all God is using it for His good and His glory. Thank you for praying for peace – I know I need that!
Kariann – Thank you for your encouraging words and prayers too! I appreciate them so much. Hugs to you too! (((Kariann)))
Christine – Thank you sweet friend for your prayers. I’m thankful for the many ways you have walked with me before during trials.
Love and hugs to all of you!
Leslie
I will be praying for Daniel and for you, Leslie. I hadn't read of his diagnosis before this post. Thinking of the "what ifs" can be so scary, I am praying your mind will not dwell there since it is beyond your control and God already knows exactly what is going on. May He enable you to truly REST in Him. Our boy with sensory issues feels more secure when he is holding some small thing all the time - a small ball or even a little superhero figure or something. He just wants to feel something in his hand all the time. He also loves to listen to audio stories. If you have a good set of headphones and a portable CD player, that might be an idea for tomorrow. I'll pray God gives you good ideas for ways to comfort and help Daniel through the long testing time.
ReplyDeleteThis verse really comforted me last week as we are still dealing with mortgage issues and still have no furnace and I was tempted to worry: "Peace I leave with you, my peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27
Prayerfully,
Pam in SE MI
We are praying that all will go well with the testing and you get the answers that you need. Hopefully, it will be something minor.
ReplyDeleteBlessings,
Dawn
I am so sorry for everything your family has been dealing with. I hope and pray that the appt goes well and the results are good.
ReplyDeleteBlessings
Diane