We are ready for surgery and most of all Andrew is ready and excited to have this surgery. We completed our pre-op evaluations with the pediatrician and with the ophthalmologist. Andrew is still at a strong 20/50 and will have surgery on only his left eye. The surgery is outpatient so we will arrive early on the morning of June 3rd at Gramercy Outpatient Clinic in Downtown Houston. This clinic is actually right across the street from where we go to see Dr. Mazow so it is familiar territory for us. Little Andrew will have to have nothing to eat after midnight the night before until after his surgery, so we are hoping for an early surgery time slot. At this point we will not know the exact time of the surgery until the day before.
We start giving Andrew antibiotic eye drops at 3 days prior to surgery (pray for him on this it is not fun for him!) After surgery we will have to give him the same drops plus an anti-inflammatory eye drop several times a day. He will have no bandages after surgery, but we have been told that it is possible to have bruising although not likely. He will however likely have red, bloodshot eyes for a day or two and his eye will feel like he has sand in it. The most difficult of the post op time is that for 2 weeks he cannot swim, even get bath/shower water in his eye nor any dirt. So, basically he can't be a BOY for two weeks! Well, we will catch up on a few movies and learn some new board games to play. Any suggestions for fun games is greatly appreciated.
It is strange I am finding myself grieving this change a little. Andrew's eye has just been part of who Andrew is so the thought of how different he will look has taken me by surprise. I know it will be better in every way, but that cute little eye turn is part of my first memory of seeing my sweet little boy. I will miss it. Just as one day the little boy diminishes and the young man emerges, life is about changes...we never stay the same.
Thank you to the many who have encouraged us throughout this year as we have journeyed through this process that has led us to surgery at this appointed time with this specific doctor. We are so thankful for the many prayers and notes of encouragement over the past year.
The Dvina River
Showing posts with label vision issues. Show all posts
Showing posts with label vision issues. Show all posts
Tuesday, May 19, 2009
Tuesday, April 21, 2009
Hmmm...looks like surgery stands at May 27 or will it?
Our visit with Dr. Moffatt at Family and Child Eye center went well...we think. The good news is that Andrew has definitely improved since his last visit with Dr. Mazow. On his vision test he was a strong 20/50 in his left eye the best he has done since he has been with us. Dr. Moffatt concurred that surgery was imminent and that we should proceed with surgery as scheduled. He did not even suggest any vision therapy until after surgery. We were however disappointed that he felt Andrew would need much longer therapy than the first optometrist had suggested. Dr. Moffatt felt he would need 2yrs post surgery where previously we were told 9 months. We left still very skeptical and unsure since we are being told that while we will be given things to do at home we have been strongly cautioned that it needs to be done under the careful instruction of vision therapists not attempted on our own. This line of thinking I am familiar with. It is what many told me about home schooling--leave this to professionals. So, if we do vision therapy you can be sure that I will be taking careful notes and perhaps looking for a vision therapy textbook. Much for us to consider and pray about. Unfortunately, none of the vision therapy is covered by insurance and it is very pricey. I am not sure how we could afford it even if we wanted to do it--trusting the Lord for His provision should He lead us to do this. On a more positive note though I noticed how automatic Andrew's recognition of his letters has become. I am still convinced that Andrew has needed more time for his language to catch up before we could really get a good idea of where his vision is lacking and where he is developmentally.
This of course is the great challenge when adopting internationally because you know that there are delays (many that can be overcome in the natural course of life), but always the possibility that additional help may be needed in areas that have gone untreated for longer periods of time or where real damage has been done. For Andrew we have felt all along and continue to feel that most of his developmental issues are/were institutional effects--like the lack of opportunity to learn some basic skills when he was younger.
We talked to Dr. Ky about our visit with Dr. Moffatt, and Dr. Ky was not ready to concede just yet to surgery so he made another call to a Neurological Chiropractor who mentored him and asked for some advice. We continue to be amazed and thankful to the Lord for sending us Dr. Ky to advocate for Andrew and encourage us.
Interestingly, Dr. Ky's mentor had some activities for us to try with Andrew at home (finally, this is what we have been asking for since we first set foot in a Dr.'s office 10 months ago!!). He suggested 15mins a day of each of these activities: crawling, marching, and using an upper body ergometer (device you can use to pedal like a bike with your arms). Andrew could crawl just fine, but when we tried the marching he was all over the place and not able to control his arms at first. We worked with him to show him how to get control and his timing down and in no time he was really making some progress. He definitely did not learn this activity and apparently it is useful in developing a certain part of the cortex in the brain related to visual development. Now, we couldn't say for certain that--again because of lack of opportunity--he hadn't learned this or is there some damage to this area that is causing him to have difficulty with this activity. We think the former, but from a neurological chiropractor's stand point, whether there was damage or lack of opportunity working this "like a muscle" and strengthening it along with Andrew's chiropractic adjustments we could see an improvement in his vision, even the possibility of his eye straightening. We continue to hold out hope, but have a peace that if surgery is still needed we will do what is needed.
What the neurological chiropractor is telling us makes sense as we took the same approach in teaching Andrew English "lets start at the beginning" then move forward. So, we did many activities that you would do with an infant, and he of course progressed quickly through these simple skills, but I have to wonder would we have hit a wall by now linguistically had we not taken that approach. Had we skipped what seemed too simple because of an artificial need to have him "at level". Hard to know. We have felt all along less is more which is why we have been reluctant to pummel him with specialists who hear his background and immediately jump to the worst conclusion and want to subject us and Andrew to every kind of therapy and test. Simply time and the ability to work with him at home with the freedom of homeschooling to tailor his time and learning to what he needs most we believe has given him a more stable environment to bloom in. This is not to say that we would not seek additional help, but that we are not running to dozens of specialists first in that critical first year.
For our family what was most important was for us to get to know Andrew, and for him to trust us, and for us to trust the accuracy of any analysis of him. When evaluating what doctors tell you it is critical that as a parent you know your child well enough to know if this is too much right now or a waste of time. The phrase we hear most often is "the younger the better" and while this is true it is unreasonable to think that we could undo 5+ yrs in less than a year--no more than I could set out to be an astronaut in 10 months :).
We could not be more proud of Andrew and all that he has accomplished in almost a year. He remains an extremely bright, sweet, strong, brave and loving child. By God's grace he is growing by leaps and bounds still. As his parents, by God's grace we continue to prayerfully consider what is best for Andrew as a whole person. It is one of the greatest challenges as a parent, but we know that the Lord is faithful to give us wisdom when we seek Him.
This of course is the great challenge when adopting internationally because you know that there are delays (many that can be overcome in the natural course of life), but always the possibility that additional help may be needed in areas that have gone untreated for longer periods of time or where real damage has been done. For Andrew we have felt all along and continue to feel that most of his developmental issues are/were institutional effects--like the lack of opportunity to learn some basic skills when he was younger.
We talked to Dr. Ky about our visit with Dr. Moffatt, and Dr. Ky was not ready to concede just yet to surgery so he made another call to a Neurological Chiropractor who mentored him and asked for some advice. We continue to be amazed and thankful to the Lord for sending us Dr. Ky to advocate for Andrew and encourage us.
Interestingly, Dr. Ky's mentor had some activities for us to try with Andrew at home (finally, this is what we have been asking for since we first set foot in a Dr.'s office 10 months ago!!). He suggested 15mins a day of each of these activities: crawling, marching, and using an upper body ergometer (device you can use to pedal like a bike with your arms). Andrew could crawl just fine, but when we tried the marching he was all over the place and not able to control his arms at first. We worked with him to show him how to get control and his timing down and in no time he was really making some progress. He definitely did not learn this activity and apparently it is useful in developing a certain part of the cortex in the brain related to visual development. Now, we couldn't say for certain that--again because of lack of opportunity--he hadn't learned this or is there some damage to this area that is causing him to have difficulty with this activity. We think the former, but from a neurological chiropractor's stand point, whether there was damage or lack of opportunity working this "like a muscle" and strengthening it along with Andrew's chiropractic adjustments we could see an improvement in his vision, even the possibility of his eye straightening. We continue to hold out hope, but have a peace that if surgery is still needed we will do what is needed.
What the neurological chiropractor is telling us makes sense as we took the same approach in teaching Andrew English "lets start at the beginning" then move forward. So, we did many activities that you would do with an infant, and he of course progressed quickly through these simple skills, but I have to wonder would we have hit a wall by now linguistically had we not taken that approach. Had we skipped what seemed too simple because of an artificial need to have him "at level". Hard to know. We have felt all along less is more which is why we have been reluctant to pummel him with specialists who hear his background and immediately jump to the worst conclusion and want to subject us and Andrew to every kind of therapy and test. Simply time and the ability to work with him at home with the freedom of homeschooling to tailor his time and learning to what he needs most we believe has given him a more stable environment to bloom in. This is not to say that we would not seek additional help, but that we are not running to dozens of specialists first in that critical first year.
For our family what was most important was for us to get to know Andrew, and for him to trust us, and for us to trust the accuracy of any analysis of him. When evaluating what doctors tell you it is critical that as a parent you know your child well enough to know if this is too much right now or a waste of time. The phrase we hear most often is "the younger the better" and while this is true it is unreasonable to think that we could undo 5+ yrs in less than a year--no more than I could set out to be an astronaut in 10 months :).
We could not be more proud of Andrew and all that he has accomplished in almost a year. He remains an extremely bright, sweet, strong, brave and loving child. By God's grace he is growing by leaps and bounds still. As his parents, by God's grace we continue to prayerfully consider what is best for Andrew as a whole person. It is one of the greatest challenges as a parent, but we know that the Lord is faithful to give us wisdom when we seek Him.
Wednesday, April 15, 2009
Twists and Turns
All I can say is that we are seeking wisdom from the Lord with all of our hearts. Our visits with the Chiropractor are going well and Andrew seems to be showing some signs of improvement. Not specifically an improvement of visual acuity which is what the ophthalmologist is looking for, but some improvements in other areas.
We were talking to our Chiropractor about where we were at with Andrew's vision and Andrew's patching regiment. Dr. Ky again suggested that we consider vision therapy. We talked more in depth about our experience with the optometrist and vision therapy. We thought, well that was that, and didn't think too much about it. But at our next visit Dr. Ky told us that he had talked to his brother in law who is one of the partners at the Child and Family eye clinic that we had taken Andrew to for an evaluation. We were shocked to find out that he had a brother in law there that was one of the partners. We were even more surprised that Dr. Ky of his own initiative spoke to Dr. Moffatt (the brother in law) on our behalf. Dr. Moffatt was interested and told Dr. Ky that he would personally look into Andrew's case. When Dr. Ky told us about this we were so blessed by his actions and believed that the Lord may be re-opening this door of vision therapy. Even more strange is that we later found out that Dr. McMain's whom we previously saw was no longer with the practice and that her emphasis was on the learning therapy...which was what turned us off as we were looking for vision help--not play therapy, because we wanted to do that at home!
So, we decided to schedule an appointment with Dr. Moffatt specifically and will be seeing him tomorrow to re-evaluate Andrew. From Andrew's file he said that he would never have recommended that we stop patching unless we were doing vision therapy and that he felt he would likely still need surgery. He was also puzzled as to why it took us 2 months to complete the evaluation. So, now we are cautiously, prayerfully reconsidering the possibility of vision therapy. Please join us in prayer as we seek the Lord's wisdom . In the end it is His will that we want to be done. I can't help but think about so many providential events and people that the Lord has placed in our life over the past few months, when it seemed all hope was gone and that we were to just accept that we had accomplished the best for Andrew's vision. Seemingly, out of no where, a door has opened that the Lord may use to accomplish healing in Andrew's life to "restore to you the years the locusts have eaten" -Joel 2:25
We were talking to our Chiropractor about where we were at with Andrew's vision and Andrew's patching regiment. Dr. Ky again suggested that we consider vision therapy. We talked more in depth about our experience with the optometrist and vision therapy. We thought, well that was that, and didn't think too much about it. But at our next visit Dr. Ky told us that he had talked to his brother in law who is one of the partners at the Child and Family eye clinic that we had taken Andrew to for an evaluation. We were shocked to find out that he had a brother in law there that was one of the partners. We were even more surprised that Dr. Ky of his own initiative spoke to Dr. Moffatt (the brother in law) on our behalf. Dr. Moffatt was interested and told Dr. Ky that he would personally look into Andrew's case. When Dr. Ky told us about this we were so blessed by his actions and believed that the Lord may be re-opening this door of vision therapy. Even more strange is that we later found out that Dr. McMain's whom we previously saw was no longer with the practice and that her emphasis was on the learning therapy...which was what turned us off as we were looking for vision help--not play therapy, because we wanted to do that at home!
So, we decided to schedule an appointment with Dr. Moffatt specifically and will be seeing him tomorrow to re-evaluate Andrew. From Andrew's file he said that he would never have recommended that we stop patching unless we were doing vision therapy and that he felt he would likely still need surgery. He was also puzzled as to why it took us 2 months to complete the evaluation. So, now we are cautiously, prayerfully reconsidering the possibility of vision therapy. Please join us in prayer as we seek the Lord's wisdom . In the end it is His will that we want to be done. I can't help but think about so many providential events and people that the Lord has placed in our life over the past few months, when it seemed all hope was gone and that we were to just accept that we had accomplished the best for Andrew's vision. Seemingly, out of no where, a door has opened that the Lord may use to accomplish healing in Andrew's life to "restore to you the years the locusts have eaten" -Joel 2:25
Thursday, March 19, 2009
Providential Postponement
We were two weeks from surgery, but have now decided to wait another 2 months. Over the past week and half we have been working with a Chiropractic Neurologist. This began as a search to help alleviate some back and neck pain that David has had chronically for years now and that I have started having 4 weeks ago; I think pregnancy related. Anyway, in the course of evaluating and working with Dr. Ky we decided to go ahead and have the kids evaluated also. As it turns out Andrew was off the chart in an area in the neck that is considered critical to a healthy central nervous system. This particular area is known for affecting the eyes as well.
After much prayer we decided to postpone Andrew's surgery a few months to give Dr. Ky a chance to work on Andrew and just see if he improves. If nothing else we believe it will help Andrew to be in better shape for the surgery.
I am not quite sure why this surgery thing has been such a difficult process for us. Everyone we have talked to who has had the surgery says it is a "piece of cake" as far as surgery goes. It seems just as we have dealt with it and moved forward with plans for surgery something providentially steps in that causes us to postpone. Maybe we have just needed more time; I do not know, but we prayerfully weigh what is best for Andrew and desire for him the very best outcome for his vision. I never knew how hard it is when there are so many varying opinions of treatment to single out what is the best one for the whole kid. I feel like I am constantly coming back to focus on what is best for Andrew as a whole child not just a pair of eyes. That may seem strange, but over the course of 10 months David and I have desperately tried to keep that perspective because Andrew has been changing so rapidly in so many areas one month it may seem like there is a problem but it resolves itself the next or because of the severity of trying to "fix" one thing it throws other areas out of whack. One thing is for sure it has kept us on our face before the Lord in Andrew's behalf causing us to trust the Lord more with each new challenge.
I should also note that Dr. Mazow gave us the option of waiting until summer anyway to do Andrew's surgery it was only because we believed nothing else could be done that we pursued surgery so quickly. We have now moved surgery to May 27, 2009...Lord willing. For now we will continue to patch 6-8hrs daily to "hold" his vision and begin tomorrow with Andrew's first adjustments at the Chiropractor.
After much prayer we decided to postpone Andrew's surgery a few months to give Dr. Ky a chance to work on Andrew and just see if he improves. If nothing else we believe it will help Andrew to be in better shape for the surgery.
I am not quite sure why this surgery thing has been such a difficult process for us. Everyone we have talked to who has had the surgery says it is a "piece of cake" as far as surgery goes. It seems just as we have dealt with it and moved forward with plans for surgery something providentially steps in that causes us to postpone. Maybe we have just needed more time; I do not know, but we prayerfully weigh what is best for Andrew and desire for him the very best outcome for his vision. I never knew how hard it is when there are so many varying opinions of treatment to single out what is the best one for the whole kid. I feel like I am constantly coming back to focus on what is best for Andrew as a whole child not just a pair of eyes. That may seem strange, but over the course of 10 months David and I have desperately tried to keep that perspective because Andrew has been changing so rapidly in so many areas one month it may seem like there is a problem but it resolves itself the next or because of the severity of trying to "fix" one thing it throws other areas out of whack. One thing is for sure it has kept us on our face before the Lord in Andrew's behalf causing us to trust the Lord more with each new challenge.
I should also note that Dr. Mazow gave us the option of waiting until summer anyway to do Andrew's surgery it was only because we believed nothing else could be done that we pursued surgery so quickly. We have now moved surgery to May 27, 2009...Lord willing. For now we will continue to patch 6-8hrs daily to "hold" his vision and begin tomorrow with Andrew's first adjustments at the Chiropractor.
Tuesday, March 10, 2009
Moving on to surgery
We knew we would eventually be at this point and now the time has finally come. Today we had Andrew's monthly follow up exam with Dr. Mazow. We have had no progress in two months so we are certain we have hit our plateau at 20/60 vision. We are thrilled though to have regained this much vision and praise the Lord for his healing and mercy on Andrew. We have scheduled Andrew's surgery for about a month from now; April 1st to be exact. It will be an outpatient procedure downtown at the Medical complex. Dr. Mazow only wants to do surgery on the left eye and not the right eye since it is in good shape. He will reposition the left eye to have a straighter alignment. We will likely have to continue some patching after surgery, but only a few hours a day. For now though we will have to continue to patch all waking hours until his surgery in one month. We are very pleased and thankful for Dr. Mazow and his staff. They have all been very kind and helpful.
I did notice in Andrew's eye exam today how much more confident he is in naming his letters and naming them quickly. I think he is becoming much more comfortable with Dr. Mazow and his staff. To their credit they work hard to make the kids feel at ease and Dr. Mazow is never in a hurry with us. He always takes time to visit with Andrew and us. This has been an added bonus in his eye exams to see how much he is progressing not only visually, but socially, cognitively and linguistically in a different environment.
For Andrew the patching has been challenging for him to continue to catch up academically in English and socially. With poor vision he often misses some of the nuances and social cues that he is so good at picking up on when he is not patched. I know that it has been a huge blessing for him to be home schooled as he is not having to deal with negativity daily from peers that is often an additional hardship for kids with vision issues who are in a government or private school environment. We have had a few encounters with curious and sometimes insensitive strangers of all ages when we are out and about going to museums, stores, parks etc. This has provided an opportunity to address how to handle other peoples rudeness and sometimes just innocent curiosity with the security and safety of those who love him nearby to coach him and help him talk through how to respond to those situations in the future. He is not being left daily to fend for himself all alone to retreat inwardly to cope or act out agressively to defend himself. I am also thankful for the precious kids that Andrew goes to church with that are so tender and thoughtful to Andrew. Looking out for him and making sure he is not left out or in harms way as he may not always see something coming at him. To God be the glory for all that He is doing in Andrew's life. Andrew is truly an amazingly resilient little boy whom the Lord is redeeming the time lost. He becomes more precious to me everyday and I could not imagine my life without him in it. The Lord has and continues to teach me much through Andrew's eyes.
Kathlena also had her first evaluation with Dr. Mazow today. She seemed as if eye exams were routine for her when she bounded into the chair with her ponytail wagging and her big smile. Her happiness is contagious...you can't help, but smile from the inside out when you are around her. Since, she has been to all of Andrew's eye appointments observing what to do she was quite ready and so glad to have her turn. It would seem that her nystagmus has lessened in frequency and Dr. Mazow commented that it seemed very "controlled". He wants us back in 3 months to keep check on it as we were unable still to get a vision test on her. She is not quite able to comprehend reliably what is being asked of her, but this is not unusual for her age. She will be 4yrs. old by her next visit and we have a chart to work with her on for next time. Dr. Mazow was in no hurry to talk surgery for Kathlena that as long as she is showing progress and the nystagmus lessening he wants to continue to observe her for now.
I did notice in Andrew's eye exam today how much more confident he is in naming his letters and naming them quickly. I think he is becoming much more comfortable with Dr. Mazow and his staff. To their credit they work hard to make the kids feel at ease and Dr. Mazow is never in a hurry with us. He always takes time to visit with Andrew and us. This has been an added bonus in his eye exams to see how much he is progressing not only visually, but socially, cognitively and linguistically in a different environment.
For Andrew the patching has been challenging for him to continue to catch up academically in English and socially. With poor vision he often misses some of the nuances and social cues that he is so good at picking up on when he is not patched. I know that it has been a huge blessing for him to be home schooled as he is not having to deal with negativity daily from peers that is often an additional hardship for kids with vision issues who are in a government or private school environment. We have had a few encounters with curious and sometimes insensitive strangers of all ages when we are out and about going to museums, stores, parks etc. This has provided an opportunity to address how to handle other peoples rudeness and sometimes just innocent curiosity with the security and safety of those who love him nearby to coach him and help him talk through how to respond to those situations in the future. He is not being left daily to fend for himself all alone to retreat inwardly to cope or act out agressively to defend himself. I am also thankful for the precious kids that Andrew goes to church with that are so tender and thoughtful to Andrew. Looking out for him and making sure he is not left out or in harms way as he may not always see something coming at him. To God be the glory for all that He is doing in Andrew's life. Andrew is truly an amazingly resilient little boy whom the Lord is redeeming the time lost. He becomes more precious to me everyday and I could not imagine my life without him in it. The Lord has and continues to teach me much through Andrew's eyes.
Kathlena also had her first evaluation with Dr. Mazow today. She seemed as if eye exams were routine for her when she bounded into the chair with her ponytail wagging and her big smile. Her happiness is contagious...you can't help, but smile from the inside out when you are around her. Since, she has been to all of Andrew's eye appointments observing what to do she was quite ready and so glad to have her turn. It would seem that her nystagmus has lessened in frequency and Dr. Mazow commented that it seemed very "controlled". He wants us back in 3 months to keep check on it as we were unable still to get a vision test on her. She is not quite able to comprehend reliably what is being asked of her, but this is not unusual for her age. She will be 4yrs. old by her next visit and we have a chart to work with her on for next time. Dr. Mazow was in no hurry to talk surgery for Kathlena that as long as she is showing progress and the nystagmus lessening he wants to continue to observe her for now.
Thursday, January 8, 2009
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.
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!
Tuesday, December 9, 2008
Andrew's Eyes Update
Today, we went to see another ophthalmologist, Dr. Mazow of Houston Eye Center. In mid October under the advice of the optometrist we were seeing we stopped patching Andrew for his amblyopia. Once we concluded all of the testing with the optometrist and had our parent consult with the her we felt we needed to go back to an ophthalmologist as surgery is imminent (the one common thread through both dr.'s) and we were uneasy with the direction the optometrist was going. It would seem too much emphasis was being placed on his previous circumstances as empirical evidence was likely not reliable as a result of his English skills at the time of testing. So, we began patching again while we waited to get in to see Dr. Mazow as we were quite certain we would be going back to this. The more we read it seemed that in order to correct the amblyopia patching was the only way. I think this was our number one problem with the optometrist (even though we all wanted it to be true that there was another way other than patching) in that she said patching would not help him. It could be that she was willing to accept his acuity where it was and seek to improve other areas such as peripheral vision, but we were not ready to give up on him improving his acuity just yet.
Our visit with Dr. Mazow was as predicted and he concurred with our first ophthalmologist in that patching is what is needed and extensive patching in Andrew's case. So, we are back to patching all waking hours now for a month then we will go back to Dr. Mazow. He wants to keep a close check on him for signs of improvement. In Dr. Mazow's office he also had an orthoptist evaluate Andrew. She determined that he also has nystagmus in both eyes...it is very slight though. We both felt like we got a very thorough evaluation with Dr. Mazow and he is very experienced with strabismus and amblyopia. The trip to see him was not so fun as we were stuck in traffic for almost 2hrs to get to the appointment...you got to love Houston!
Please pray for Andrew...patching is hard. He is such a little trooper though. He is very compliant and knows that it is to help him see better, but it is still very hard. He tested at 20/100 at Dr. Mazow's office. When we began in July his vision was 20/50 then, 20/70 in October at the optometrist and now 20/100 so, it has doubled in 4 months. We only stopped patching for about 6 weeks. Even when we were patching it was getting worse...not sure why. We just continue to pray for wisdom and for healing for Andrew's eyes. Thank you for lifting him up to the Lord with us.
Our visit with Dr. Mazow was as predicted and he concurred with our first ophthalmologist in that patching is what is needed and extensive patching in Andrew's case. So, we are back to patching all waking hours now for a month then we will go back to Dr. Mazow. He wants to keep a close check on him for signs of improvement. In Dr. Mazow's office he also had an orthoptist evaluate Andrew. She determined that he also has nystagmus in both eyes...it is very slight though. We both felt like we got a very thorough evaluation with Dr. Mazow and he is very experienced with strabismus and amblyopia. The trip to see him was not so fun as we were stuck in traffic for almost 2hrs to get to the appointment...you got to love Houston!
Please pray for Andrew...patching is hard. He is such a little trooper though. He is very compliant and knows that it is to help him see better, but it is still very hard. He tested at 20/100 at Dr. Mazow's office. When we began in July his vision was 20/50 then, 20/70 in October at the optometrist and now 20/100 so, it has doubled in 4 months. We only stopped patching for about 6 weeks. Even when we were patching it was getting worse...not sure why. We just continue to pray for wisdom and for healing for Andrew's eyes. Thank you for lifting him up to the Lord with us.
Tuesday, November 25, 2008
Sorting things out...vision issues update
We have completed the testing through the optometrist. While the optometrist believes that the patching will not produce better acuity and that perhaps this is lost and will not be regained, however she believes through therapy his eyes can be trained to compensate in other ways for it. She has recommended extensive therapy for both vision and a host of other issues. Unfortunately, we are not sure how accurate the findings are as much of the test weighs heavily on a concrete understanding of English. It would seem she is relying more heavily on his background and statistics in the recommendation for extensive therapy as she also commented on the English issue to the reliability of the testing. We continue to pray for wisdom and have decided to consult with a second pediatric ophthalmologist who specializes in strabismus and amblyopia...in fact if you do not have strabismus the Dr. will not see you. We have an appointment scheduled for Dec. 9th. We are so grateful for the Lord's provision as each time we "hit a wall" the Lord directs us to the new door of opportunity.
We continue to trust the Lord...believing his Word for all situations. Proverbs 11:14 tells us that "Where there is no counsel, the people fall; But in a multitude of counselors there is safety." This has been our prayer as we have sought Dr. after Dr. and test after test. Perhaps in all of these visits and "feeling" like we are doing something what we needed most was more time.
"You will guide me with Your counsel, and afterward receive me to glory. Whom have I in heaven but You? And there is none upon earth that I desire besides You. My flesh and my heart fail; But God is the strength of my heart and my portion forever. For indeed, those who are far from You shall perish; You have destroyed all those who desert You for harlotry. But it is good for me to draw near to God; I have put my trust in the Lord God, that I may declare all Your works." Psalm 73:24-28
We continue to trust the Lord...believing his Word for all situations. Proverbs 11:14 tells us that "Where there is no counsel, the people fall; But in a multitude of counselors there is safety." This has been our prayer as we have sought Dr. after Dr. and test after test. Perhaps in all of these visits and "feeling" like we are doing something what we needed most was more time.
"You will guide me with Your counsel, and afterward receive me to glory. Whom have I in heaven but You? And there is none upon earth that I desire besides You. My flesh and my heart fail; But God is the strength of my heart and my portion forever. For indeed, those who are far from You shall perish; You have destroyed all those who desert You for harlotry. But it is good for me to draw near to God; I have put my trust in the Lord God, that I may declare all Your works." Psalm 73:24-28
Monday, October 13, 2008
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....
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....
Monday, September 22, 2008
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.
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.
Monday, July 21, 2008
Opthamology Report
Our really cool glasses we got to wear after
having our eyes dilated. Andrew has huge
pupils...I have never seen any so large!
Kathlena with her eyes nearly fully dilated. I think it
made her feel a little funny.
Look at those pupils! I can hardly see anything else except
for that adorable Andrew smile!
Beginning patch therapy right away.
What a trooper...this is hard but Andrew is doing so well.
Well today was like letting out a deep breath for me. We have known from the beginning that Andrew has vision issues, but we have only speculated about Kathlena's multiple issues all being related to vision. Today confirmed what we were thinking. PTL!
We had a great visit with Dr. Coats from Texas Children's. He confirmed what we suspected about Andrew that he has Esotropia (eye drift to the middle and up), mild hyperopia or hypermotropia (same thing) and as a result developed amblyopia in his left eye. The great news is that he has 20/20 vision in his right eye and was reading his letters very well in English. He did so well throughout his exam. He didn't seem nervous at all but interested in how everything in the office worked. His left eye is at 20/50. At this time the Dr. would like for us to do patch therapy where he wears a patch over his "good" eye (right in his case) for 2 months to begin strengthening the left eye. He must wear the patch 6-8hrs a day...he is not liking it but he has been persuaded to wear it. ;) Now, the Dr. thinks that surgery is unavoidable and has asked us to go ahead and schedule it for 3 months from now. We are praying that the patching helps strengthen his vision thus correcting the amblyopia, but in order to straighten the muscle (hypertropia), surgery seems to be the only option-we continue to pray for healing without surgery, Lord willing, and if the Lord chooses to heal him through surgery we will trust Him in this also. We go back in 2 months to see the progress with the possibility of pushing back surgery at that point if patching is making improvements along with his weight gain and overall health improvement.
For Kathlena this was a home run day for us to find out what we have suspected all along. All of her issues were related. No CT scan needed nor neuro follow ups. She did so well in her exam. The Dr. was amazed at how she would sit still and allow him to look into her eyes. We have often attributed this to all of her Dr. visits she has had in Russia, but usually kids who see many Dr.'s and have lots of tests done tend to fight it more. I definitely think we are beginning to see the fruit of lap training. She sat in David's lap the entire time. Even when she and Andrew both had to have their eyes dilated they both did well, no screaming or squirming. While we waited for their eyes to dilate they got to watch Monsters Inc., which was so funny since Andrew has not seen it in quite a while, but still loves it all the same.
Kathlena was diagnosed with nystagmus (her eyes bounce, difficulty tracking). Dr. C ruled out the Spasmus Nutans even though she has the head bobbing. His best explanation of how this could be related to the "birth trauma" we were told at the orphanage is that oxygen was restricted during birth to a particular area in the brain that effects vision, including the pigment for the eye color. He also ruled her out as having albinism (ocular or otherwise) even though her eyes are very light. He did not see the other characteristics that usually mark this. He did say that she could be on the spectrum of it though due to the birth trauma. For now, we wait and see how much good food and activity improve her situation. It is expected that eventually she will also have to have surgery, and providentially it would be the same surgery that Andrew will have. Is that not amazing! Two biologically unrelated children placed in the same home who will have the same surgery...the Lord knew and placed together for His glory. It may sound strange, but I am thankful that I have already gone through surgery with J.Michael when he was young (again, providentially when he was 6yrs old just like Andrew will be if we do have surgery). I know it will not be any easier to have Andrew wheeled out to surgery, but the Lord is so good to prepare us and strengthen us through these times. Here is what to expect from the surgery and recovery stage. I have lots of reading up to do and will post more soon. Thank you for your continued prayers.
Wednesday, July 16, 2008
Strabismis
We have known from the beginning that Andrew would have some vision issues. We also found out that Kathlena has them too after being seen by our pediatrician (we suspected this in Russia too). Both children were diagnosed as strabismis in Russia but Kathlena's was not noticeable.
What is strabismus? Well here is what I have been researching and have come up with.
Strabismis-Symptoms Typically it is when the eyes move in different directions (crossing) but can also be less noticeable...eyes are straight but the child will tilt his head to see and likely run in to things because of depth perception problems.
Strabismus-treatment Simple explanation of possible treatments available. We will know more after our visit to the Pediatric Opthamologist next Mon. for both Andrew and Kathlena.
Amblyopia This is what is sometimes called lazy-eye, wandering eye and characterized by loss of vision due to the brain compensating through the other eye that is straight or stronger. Thus making it more of a neurological issue than muscular although usually they go hand in hand. Another good article explaining Amblyopia also has some great pictures of corrective surgery. Possibly to a degree what Andrew has...we are waiting for our Pediatric Opthamologist visit on July 21st to know for sure. Amblyopia-Exams and Tests what to expect. Hypertropia is a verticle drift which we see in Andrew's left eye mainly when he is looking up at you.
Nystagmus Uncontrolled movement of the eye usually from side to side. Also, characterized by a head tilt to compensate for the "null zone" This is generally thought to be genetic. Nystagmus Spasmus Nutans is a form that occurs generally between 6 mos. and 3 yrs. but resolves itself from age 2 to 8. Possibly what Kathlena has...would explain the head tilt issue that has been with her since birth. Albinism, "Albinism is the name given to a group of inherited conditions in which there is a lack of pigmentation (colour) in the eyes (ocular albinism) and often in the skin and hair as well. This causes most people with albinism to have a very fair, almost white, appearance, although in some people albinism affects the eyes only. People with albinism find their greatest problems arise on sunny days and in brightly lit environments. Virtually everyone with albinism has nystagmus", Understanding Nystagmus Again, only my limited knowledge of surfing the net and connecting some vague dots...we hope to know more specifics after our P.O. Dr. visit.
An interesting article on Vision and Learning. He even references poor nutrition(over consumption of processed foods and sugary sweets, sodas etc.) as one of the causes of visual problems in children. Hmmm...quite interesting info.
What is strabismus? Well here is what I have been researching and have come up with.
Strabismis-Symptoms Typically it is when the eyes move in different directions (crossing) but can also be less noticeable...eyes are straight but the child will tilt his head to see and likely run in to things because of depth perception problems.
Strabismus-treatment Simple explanation of possible treatments available. We will know more after our visit to the Pediatric Opthamologist next Mon. for both Andrew and Kathlena.
Amblyopia This is what is sometimes called lazy-eye, wandering eye and characterized by loss of vision due to the brain compensating through the other eye that is straight or stronger. Thus making it more of a neurological issue than muscular although usually they go hand in hand. Another good article explaining Amblyopia also has some great pictures of corrective surgery. Possibly to a degree what Andrew has...we are waiting for our Pediatric Opthamologist visit on July 21st to know for sure. Amblyopia-Exams and Tests what to expect. Hypertropia is a verticle drift which we see in Andrew's left eye mainly when he is looking up at you.
Nystagmus Uncontrolled movement of the eye usually from side to side. Also, characterized by a head tilt to compensate for the "null zone" This is generally thought to be genetic. Nystagmus Spasmus Nutans is a form that occurs generally between 6 mos. and 3 yrs. but resolves itself from age 2 to 8. Possibly what Kathlena has...would explain the head tilt issue that has been with her since birth. Albinism, "Albinism is the name given to a group of inherited conditions in which there is a lack of pigmentation (colour) in the eyes (ocular albinism) and often in the skin and hair as well. This causes most people with albinism to have a very fair, almost white, appearance, although in some people albinism affects the eyes only. People with albinism find their greatest problems arise on sunny days and in brightly lit environments. Virtually everyone with albinism has nystagmus", Understanding Nystagmus Again, only my limited knowledge of surfing the net and connecting some vague dots...we hope to know more specifics after our P.O. Dr. visit.
An interesting article on Vision and Learning. He even references poor nutrition(over consumption of processed foods and sugary sweets, sodas etc.) as one of the causes of visual problems in children. Hmmm...quite interesting info.
We are praying for a clear diagnosis and that the Lord would direct our steps(Psalm 37:23) to the best solutions to help Andrew and Kathlena function the best visually. We appreciate your continued prayers as we continue to grow their trust with us, developing good communication skills and seek to do what is best for them. I will update next week what we find out and give more specifics for prayer...thank you for lifting us up.
"Now faith is the substance of things hoped for the evidence of things not seen." Hebrews 11:1
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