Thursday, April 16, 2009

EYE TO EYE.....1


Once I started writing this, I realized that this is probably going to be waaaay more than anyone wants to read at one sitting, so I am going to tell this story in 2 parts. Today is the background information. Then tomorrow comes the newest chapter.

As most of you know, my middle son, Alex, suffers from a degenerative disease called cerebellar atrophy. For some unknown reason, the cerebellum has begun to die, causing holes to develop , which prevents nerve impulses from travelling as they should. This causes him to have severe balance problems. You would think he was very drunk if you saw him walking. His disease also has an element of extreme head and neck pain...this is excruciating and never goes away. He has double vision, nystagmus, which is a constant jumping of the eye, and vision measured at 20/5000. To see anything, such as TV or computer, or a book, it must only be a few inches away from his eyes. His double vision can only be corrected for a few feet, anything of any distance is always doubled. This makes it nearly impossible to watch a movie in a theater, or see the pastor at church, of even to drive a car. We have been to doctors around the US to find some help for his vision. Because all of all the myriad of problems, help has been very hard to find.

Once, about 10 years ago, we went to Boston in search of help for the extreme pain he lives with constantly. We spent several days at Children's Hospital in Boston, undergoing numerous tests, only to be told they had nothing new to offer us. We were sitting in the doctor's office and he was telling us this news, and then he asked Alex if there was anything else he could help him with. Alex told him, "I guess not...unless you can help me with my vision problems." The doctor asked him a few questions about it, and then said, "Alex, I can't do anything, but I know someone who can, if anyone can. My best friend is the Chief of Staff at the New England Eye Institute. I don't know if he can see you or not, but I'll check. You will probably have to come back, because most people have to wait several months to see him." He made the call as we were sitting there in the office. He explained the situation, and talked a minute, then hung up. Looking at Alex, he said," Be there at 10:00 in the morning." We changed our flight plan back to Dothan, and went to the office the next morning. He was the nicest man, and was immediately fascinated by the problems with Alex's eyes. We saw 3 or 4 different doctors that day. Then, the medical students started coming in, the residents and the interns. The doctor explained to us just how rare it was to see eyes with the varied problems that Alex had. His nystagmus is very, very rare. He explained to us that he had only seen 2 or 3 cases in his whole career. So, he was thrilled to be able to show the students and others, because it was possible they may never see it again. And of course, we didn't mind at all. We figure that the more doctors that see the problems, the more, HOPEFULLY, that will want to find a solution.

He was able to fix some glasses for Alex that helped him somewhat. He made one pair of glasses for him to see close up, and another pair for him to see far away. He was able to help a little more with the double vision, too. And, we worked with them over the next few years. We came to love visiting Boston, and looked forward to our visits every 2 years.

So...even though we got no help at all for the pain that Alex was experiencing...we did find some help with his vision. We thought this was the perfect example of this verse from Romans 8...Verse 28: "And we know that in ALL things God works for the good of those who love Him." See, we were very disappointed and dejected when we realized that the pain specialist couldn't help us...but God had another plan all along. We had never even heard of the New England Eye Institute...but God had. And His plan all along was to get us to Boston, He just had a different doctor in mind to help us. Isn't that just like Him? He took what we thought was a wasted trip, and turned it into a wonderfully helpful visit.

9 comments:

nancygrayce said...

Tonja, I almost fell down when I read this about Alex's Nystagmus! Our youngest, actually my step son, has Nystagmus, along with a number of other birth defects....the main one being Golden-Har syndrome. Matt has a chin down null point which led to shoulder problems.

For several years, I was involved online in the American nystagmus Network. There is a lot of good information shared on that site. I haven't been on the site for several years not, but if you're interested you can google Nystagmus Network and I'm sure you can can find the link

Matt has had facial surgery at UAB and had some eye surgery done at Shands.....he was also born without the muscle that makes your eyelid open and close in his left eye and had a piece of fascia(sp?) taken out of his leg and used for that....his left eye still stays closed or almost closed most of the time.

If only we had known, for years we wanted to find another child with Nystagmus so that Matt could meet them.

We have always been told that the nystagmus was a neuro problem and not an actual eye problem. Matt's vision is also limited. We found that contact lenses slowed his eye movement significantly and also corrected his vision better than glasses.

He's one of the very few who is driving with N.....Yikes! He honestly passed his driving test on a fluke because i insisted they let him use a chart instead of that box.....people with nystagmus can't see anything in the box eye exams. Recently his doctor said maybe he shouldn't be driving at night. I just looked at him and said, please don't say that to me, he's been driving at night for 6 years now. We just pray a lot!

Love Being a Nonny said...

I am so excited that this might have a more than wonderful ending..................


Hope you received your monogrammed towels!!

Darby said...

Tonja... I'm already ready for part 2... the way you tell a story has me on the edge of my seat...


waiting...

LivingTheLife said...

Isn't our God GRAND...he is so much bigger than any problem we can come up with or present to Him...I love how you ALWAYS...ALWAYS give the Glory to HIM...and how you look at things thrust upon you with such optimism! You, my lady are one fine example of GRACE!!

I'm so thankful that the Doctor in Boston was able to help Alex's eye problem...and he is able to see better than he could before.

We love Boston, too...and when you deal w/medical issues on a regular basis...it's always nice to have a little adventure to an amazing place to look forward to.

I can't wait to hear some even better news...tomorrow.

Blessings...
Teresa

Debbie said...

That is such great news. God is so good! Even though we don't know the reasons why your son is going through what he is going through, God is there. Keep the faith and I will continue to pray for him and you and your family. In Him, Debbie

Musicaljean said...

Come on, Tonja, you're teasing me! I would gladly have read part 2 right now. But I'll try to be patient.

Paula (SweetPea) said...

I could've kept reading...now, you've given us a cliff hanger, you bad girl, you.
:0)

Jillian, Inc said...

Every time I read about Alex my heart just aches. I wish he didn't have to suffer the pain, etc. But this was such an uplifting post about the goodness and hand of God. Can't wait to read the 2nd part. And praise God about Don in the post below. Your sons are wonderful.

Melinda said...

I've read a bit about your son's medical issues before but until this post I didn't realize the degree to which he struggles daily. Please know that he will bein our prayers daily from now on. I'm eager to read part 2 of this story!