Ophthalmology Update...progress!!!

We went for our follow-up appointment today with Dr. Mazow, Andrew's pediatric ophthalmologist (maybe I will finally learn how to spell this word!) who specializes in strabismus and amblyopia. We were so thrilled to find out that Andrew had improved 3 lines, from 20/100 to 20/60. He is almost back to where we thought he was at last summer, although now we have to wonder if he really was 20/50 since two other Dr.s showed him at best 20/70. At any rate it was a great relief to have him going in the right direction. So, we continue to patch all waking hours for another month and pray we can get him to 20/30. This is Dr. Mazow's optimum for him before surgery. The truth is this would truly be a miracle given the likely length of time he has gone untreated as we believe him to have had this since birth. We trust our sovereign Lord and pray His will be done as He created Andrew's eyes and knew all of this would come to pass.
Dr. Mazow will do the surgery even if Andrew does not improve from where he is right now, but we are unsure how long he will wait. I believe as long as Andrew is showing improvement that we will continue to patch month to month. Once progress plateaus I am sure we will begin to talk about surgery options.

Patching all waking hours is difficult. We are seeing some changes in Andrew. As you can imagine he tires more easily, concentration and focusing on tasks has become much more challenging for him. In the evening I can more visibly see his nystagmus in the left eye as he is so tired. It is a sacrifice as his learning has slowed also although he continues to amaze us with his impeccable auditory learning and memory. The Lord has given him such a sweet spirit of perseverance and joyful attitude with all of this. Of course that smile says it all. We know the sacrifice is short term for long term benefits. We trust the Lord to guide us to make the best decisions for all of Andrew not just his eyes.

Dr. Mazow was so excited and so good with Andrew. It was a good day as we all went to this appointment together so, we all got to share the joy of this news first hand. In talking with the Orthoptist she noticed Kathlena's head tilt and we talked to her about Kathlena's nystagmus. We will be taking Kathlena in for evaluation at Andrew's next visit too. We feel so blessed by Dr. Mazow and his staff. All of them have been so good to us and the kids. We praise the Lord for leading us to this Dr. at just the right time.

I continue to research on both nystagmus and strabismus and surgical options. A book that has been very helpful to me is Navigating Nystagmus with Your Doctor. The man who wrote it has lived with nystagmus his whole life and fought to get the treatment he needed. He has done tons of research and even has yahoo groups of people who share this diagnosis. There have been some new surgical procedures in the last decade that may be what Andrew and/or Kathlena will need. I am continually in awe of how the Lord is providing for them in ways I could never have imagined.

Both Andrew and Kathlena continue to grow in stature and knowledge. They are truly incredible kids. I am so privileged to be their mom.

After our appointment we headed over to the Houston Zoo. That Zoo pass is going to get lots of use as we are going monthly for Dr. appointments. Here are some pictures from our day.

My beautiful girls!

Zebras were Andrew's favorite.

This little lizard was too funny. It was playing with Kathlena.

It would jump towards the glass at her and she would giggle.

I wished I had videoed it. It was too cute! The reptiles are not

usually so lively so we were surprised.

Andrew and Kathlena's first time on a carousel. They are

hooked now and can't wait to go back next month to ride

again.

Daddy is coming to pick us up and none too soon

as the littles are ready for a nap. It has been a long,

exciting day. Mommy is ready for a nap too!

No internet...much to post...limited access

Our internet line hanging over the road was knocked out by a disaster relief truck last week. Charter, our internet provider told us 2 weeks before they could get to us to fix it. This is the third time this has happened-the last time the line repairman having mercy on us did attempt to move the line as high as he could without restringing more line.
This past Friday by some miracle the charter lineman was out at our house last and "fixed" the line only we still did not have internet as our modem was fried when the line was yanked...arrrrgh. So, today David was off to Conroe to get a new modem only to come home and find not only the newly repaired charter line on the ground, but our phone line also which was our plan B to switch internet providers to Consolidated...they are due out to connect tomorrow. So we will see how this goes, but posting will be sketchy since a homeschool mom with 4 children in a Starbucks for hours is not very conspicuous nor cost efficient.
On a brighter note today is my oldest blessing's 14th birthday. It has been a big week for her as she got her braces off too. What an even more beautiful smile she has now. Wow, does time fly. It seems only yesterday she was a baby and now so grown up. I will write more and post pictures about our girly day as I am able. Happy Birthday, sweet Emily!
We will have another consult with the optometrist tomorrow for Andrew. The immediate good news for him is NO MORE PATCHES! He has been so relieved even if it is only for a short time as we suspect we will need to use them but in a more directed, specific way. The optometrist was able to tell us what is going on in his eye and that he is trying to use a different part of his eye to see which all the patching was not going to improve his vision. I am so excited to see where this leads us and so thankful that the Lord directed us this way. He is so faithful!!
Okay, Emily and I have to get out of Starbucks and head home for her birthday dinner. Hoping to post more soon. Have some adorable video I want to share of Andrew and Kathlena playing...their language is growing so rapidly and they are the cutest little kids. We are closing in on our first post placement visit also so I am beginning preparation for this also....

Patching continues...surgery on hold

Today was our follow up visit for Andrew with the pediatric opthamologist. I would be lying if I said I am not completely shocked at the results of our visit today. I was so sure that Andrew had regained most of his vision as he seems to function so well with his eye patched...even riding his bike "no fast, Mom!" as he whizzes by me. I must admit that I am taking this really hard because he has had little to no improvement and we have been so diligent to patch everyday except for 2-3 times in the entire 2 months as well as keeping in the 8hr+ range a day. Dr. Coats is now recommending another 2 months of patching only now it is every waking hour. This breaks my heart as he was so ready to have no more patches and since we were so shocked we had ill prepared him for this possibility(nor did we know of this possibility-thought surgery was imminent). He is a trooper though and willingly has resumed patch wearing. For now we have been advised to schedule surgery again in 2 months following his next follow up appt. and that if no improvement is made we will move to a chemical blurring of the good eye to force use of the weaker eye. Dr. Coats said that for some reason when a patient doesn't respond to patching sometimes they will to the drops and vice versa. We are trusting the Lord to give us wisdom in all of these matters to make the best decisions regarding Andrew's health. Perhaps like many things simply more time is needed for his body to heal. Everyday he is getting stronger and healthier with good nutrition so I have to think there are additional factors in his vision improving.

Dr. Coats has given us a few other options to work with Andrew on over the course of the next two months that I am going to check out and see. Dr. Coats assured us that even with his current vision he would still be eligible for a driver's license which was something I had not even thought about. He is not giving us glasses as an option as it seems to be a brain to eye issue. I have some researching to do and hopefully will have more to post soon.

Sibling Sympathy

Andrew is doing so well with his patch therapy. Today at breakfast he asked me for his patch. Since we were going on our bike hike/walk I told him we would wait and put his patch on after since he rides his like a bike and it would be too dangerous for him to ride through the neighborhood patched. He said, "Okay, Mom. Yes, ma'am"

After we returned we put his patch on and curiosity from his brother and sisters got the best of them. I decided it would be worth the cost of patches for them to understand a little what it is like for Andrew to do this. J.Michael had his on for 5 mins and began to complain that he wanted to take it off. It was too hot and uncomfortable, but he kept his on until noon (1 1/2hrs). Kathlena didn't last long but longer than I thought she would (whew! thank goodness it is not her we are patching!) Emily kept hers on for over an hour but too said it was hot and that the adhesive stung her eyes. She was able to read and do some "normal" activities but it impressed upon her how limiting it is and I think it gave us all a greater sympathy for what Andrew's world is like right now. We all agreed he is very determined to improve his vision and that he fully understands that this is what will help him therefore he is very motivated to keep his patch on. We are all a little more patient and very proud of Andrew's perseverance with the patch therapy.