AT THIS POINT, ELIZABETH AUBREY WILES IS CLEARCLEARCLEARCLEARCLEARCLEARCLEARCLEARCLEARCLEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Her right eye is lazy, may need to wear a patch for a few hours each day. Teh dr cannot guarantee that she will never have the problem, but the fact that both J and A had it at such a young age is a VERY GOOD sign for E!!!!
Praise GOD!!!!! Miracle #1 has occured!!! Keep praying for 2 and 3!!!
Just one problem....a boy tried to kiss her in the waiting room. UHOH!!!! ;)
Thursday, March 31, 2011
Tuesday, March 8, 2011
Super Speller!
Elizabeth won the spelling bee at her school a while back. She beat ALL the kids at her school-2nd thru 5th grade. We were a bit proud. ;)
Last weekend, she competed in the regional spelling at Union University. There were 37 kids there from all over West TN, grades 3-8. She was the ONLY 3rd grader. We kept hearing people make comments when they read the program “There’s a THIRD GRADER here!” I so wanted to say “THAT’S MY BABY!!!”
There was a good crowd! Elizabeth did so well. She beat about 20 of the kids, and came in 16th. I think that is AMAZING. When some of the kids would miss a word, you would hear them crying. I felt so sorry for them. :( When Elizabeth missed her word (kahuna!) she bounced back to us with a grin on her face. I didn’t have to worry about her! HAHAH!
After wards, we went to Red Robin to celebrate. She even got some free ice cream because it was a special day. :) Aunt Nancy gave her some special pills, so she even got to eat it.
Needless to say, we are VERY PROUD OF ELIZABETH!!!!
(I dunno what's going on with these pics. They won't play right. But, they are all here..some more than once)
Last weekend, she competed in the regional spelling at Union University. There were 37 kids there from all over West TN, grades 3-8. She was the ONLY 3rd grader. We kept hearing people make comments when they read the program “There’s a THIRD GRADER here!” I so wanted to say “THAT’S MY BABY!!!”
There was a good crowd! Elizabeth did so well. She beat about 20 of the kids, and came in 16th. I think that is AMAZING. When some of the kids would miss a word, you would hear them crying. I felt so sorry for them. :( When Elizabeth missed her word (kahuna!) she bounced back to us with a grin on her face. I didn’t have to worry about her! HAHAH!
After wards, we went to Red Robin to celebrate. She even got some free ice cream because it was a special day. :) Aunt Nancy gave her some special pills, so she even got to eat it.
Needless to say, we are VERY PROUD OF ELIZABETH!!!!
(I dunno what's going on with these pics. They won't play right. But, they are all here..some more than once)
Friday, February 4, 2011
I knew they were odd…
(As I TRY to explain this, please keep in mind I am NOT a science person.)
So, we went to Memphis again yesterday. There is absolutely no doubt in my mind that God has placed us where we are supposed to be.
We saw Dr. Allessandro Iannaccone. He was awesome. His nurse, Mindy, was amazing as well. We had both of them all to ourselves all afternoon. They did a thorough exam on both Jason and Amy. Dr I (get it? Dr I) was amazed that either of them could see as well as they can, given the extent of retinal damage they both have. Amy’s is comparable to Jason’s, which is not good considering Jason is 32, and Amy is 4. It was SO helpful to have Jason there, though. The dr could compare the two of them, and it really helped with the diagnosis. We did a complete medical family tree, and several test on both Jason and Amy. Jason laughed and said it wasn’t fair…he went to AMY’s appointment and JASON got stuck with the needle. Dr. I felt confident from the beginning that the issue was genetic, and by the time we left, we were 99% sure of it. He also feels confident that, after exams and testing on both of them, he knows what the problem is. This is amazing to me. The way he explained it, we have about 200 genes. Each gene has two parts, mom and dad. When we got there, we were looking at 400 options. When we left, he felt confident we were down to ONE. Based on the location of the damage (behind the retina, rather than in front), the damage is very indicative of dominate drusen. It is also called honeycomb macular dystrophy.
Doyne's honeycomb retinal dystrophy
This disorder has symptoms quite similar to those of AMD: drusen on the macula and at the edge of the optic nerve head, macular scarring, and neovascularization in late stages, with progressive loss of central vision. Symptoms typically arise during the fourth or fifth decade of life.
Doyne's disease has an autosomal dominant pattern of inheritance. The responsible gene has been mapped, cloned and sequenced. Based on sequence similarities, it has been given the name EGF-containing fibrillin-like extracellular matrix protein, abbreviated as EFEMP1. The protein, whose function is not yet known, is found behind the retinal pigment epithelium (RPE).
I’m sure that helped you as much as it did me. :)
So, what does this mean? Well, we have to keep in mind that the diagnosis is NOT 100% yet. Jason will have another test on March 31, and Amy will have more in April. She will have to be sedated for the tests, so we are not thrilled about that, but the test is just too intense for a 4 year old to handle while awake. Elizabeth will also go to be screened on March 31. The reason we have to wait is that Dr. I also practices in Italy, and will be headed there in the next week or so. In the mean time, we have vitamin supplements, including DHA for Amy and Lutein for Jason.
In the event we do receive and official diagnosis of Doyne’s, we will proceed with genetic testing. This will lead to possible stem cell therapy. I have no idea what this will involve, but I would assume they would take my “good” cells and give them to Amy, possibly Jason, and Elizabeth (if necessary, PRAYFULLY she has skirted this issue. She has been seeing an eye specialist for 5 years for other issues and this has never been mentioned.) I don’t want to begin to think about how they will take my cells, or give them to my family.
So, that’s where we are. I have absolutely no doubt in my mind that GOD placed us with Dr. I. We are going to be ok. Amy is not going to go blind from this. Jason is not going to go blind from this. They may both end up with decreased vision one day, but they will still be able to function. God is good, and He will see us through this.
So, we went to Memphis again yesterday. There is absolutely no doubt in my mind that God has placed us where we are supposed to be.
We saw Dr. Allessandro Iannaccone. He was awesome. His nurse, Mindy, was amazing as well. We had both of them all to ourselves all afternoon. They did a thorough exam on both Jason and Amy. Dr I (get it? Dr I) was amazed that either of them could see as well as they can, given the extent of retinal damage they both have. Amy’s is comparable to Jason’s, which is not good considering Jason is 32, and Amy is 4. It was SO helpful to have Jason there, though. The dr could compare the two of them, and it really helped with the diagnosis. We did a complete medical family tree, and several test on both Jason and Amy. Jason laughed and said it wasn’t fair…he went to AMY’s appointment and JASON got stuck with the needle. Dr. I felt confident from the beginning that the issue was genetic, and by the time we left, we were 99% sure of it. He also feels confident that, after exams and testing on both of them, he knows what the problem is. This is amazing to me. The way he explained it, we have about 200 genes. Each gene has two parts, mom and dad. When we got there, we were looking at 400 options. When we left, he felt confident we were down to ONE. Based on the location of the damage (behind the retina, rather than in front), the damage is very indicative of dominate drusen. It is also called honeycomb macular dystrophy.
Doyne's honeycomb retinal dystrophy
This disorder has symptoms quite similar to those of AMD: drusen on the macula and at the edge of the optic nerve head, macular scarring, and neovascularization in late stages, with progressive loss of central vision. Symptoms typically arise during the fourth or fifth decade of life.
Doyne's disease has an autosomal dominant pattern of inheritance. The responsible gene has been mapped, cloned and sequenced. Based on sequence similarities, it has been given the name EGF-containing fibrillin-like extracellular matrix protein, abbreviated as EFEMP1. The protein, whose function is not yet known, is found behind the retinal pigment epithelium (RPE).
I’m sure that helped you as much as it did me. :)
So, what does this mean? Well, we have to keep in mind that the diagnosis is NOT 100% yet. Jason will have another test on March 31, and Amy will have more in April. She will have to be sedated for the tests, so we are not thrilled about that, but the test is just too intense for a 4 year old to handle while awake. Elizabeth will also go to be screened on March 31. The reason we have to wait is that Dr. I also practices in Italy, and will be headed there in the next week or so. In the mean time, we have vitamin supplements, including DHA for Amy and Lutein for Jason.
In the event we do receive and official diagnosis of Doyne’s, we will proceed with genetic testing. This will lead to possible stem cell therapy. I have no idea what this will involve, but I would assume they would take my “good” cells and give them to Amy, possibly Jason, and Elizabeth (if necessary, PRAYFULLY she has skirted this issue. She has been seeing an eye specialist for 5 years for other issues and this has never been mentioned.) I don’t want to begin to think about how they will take my cells, or give them to my family.
So, that’s where we are. I have absolutely no doubt in my mind that GOD placed us with Dr. I. We are going to be ok. Amy is not going to go blind from this. Jason is not going to go blind from this. They may both end up with decreased vision one day, but they will still be able to function. God is good, and He will see us through this.
Monday, January 31, 2011
These eyes....
Well, I had all these great plans for my first 2011 post. About what a great year it is, how it's started off SO much better than 2010, etc. And it has started out better, for the most part.
Elizabeth won the spelling bee at her school. As in, beat the entire school. She will compete regionally in March. :)
Jason is recovering nicely from his surgery on Christmas Eve. He is back to work and things are back to normal.
we are the "guinea pigs" for a new curriculum at church. One of our members has written a year long study and we are testing it out for him, and for Lifeway. We will read then entire Bible over the course of a year, and study it together as a church family. Changes are already visible, and we are all enjoying the study.
This leads us to Miss Amy Hope. We went for a basic eye check up the first week of the year. The dr. noticed something on her retina. he thought it was probably nothing, but wanted us to check on it to be sure. So, off we went to a retina specialist in Jackson. He said yes, there is definitely something in there, I think it's Stargardts, but I don't know for sure. Then we heard the sentence no parent wants to hear: Do you want to go to Vanderbilt or Lebohnner? After picking my jaw up off the floor, I decided on LeBohnner. He recommend a "Dr. A", a pediatric opthamologist, for us. After the doc left the room, the nurse said, "I shouldn't tell you this, but I have to. Dr. A has a horrible bedside manner. I used to work for Dr. Byrd, and many of our patients came to us as a result of not liking Dr. A. This is her name and number, if you decide to see her, tell her I said for her to see you." I thanked her, and went to make the appt with Dr. A, planning to discuss this with Jason when I got home. when I got to the appt desk, we discovered that Dr. A wouldn't even see Amy until APRIL. So, I said what about Vandy? One of the receptionists said, "Isn't there a Dr. Byrd in Memphis?" I jumped in and said "Oh, I've heard great things about her! Let's try that!" we saw her today, a week after we made the appointment. There is no doubt in my mind we were supposed to see this woman.
Anyway, she found something in Amy's eyes. A lot of something. She called it "retinal dystrophy". to be frank, it ain't good. We are going to see a dr. at Lebohnner specializing in Pediatric Hereditary Retinal Dystrophy on Thursday. I have been warned by Dr. Byrd that more than likely there will be another visit for testing, as it will have to be done under sedation. We also have to bring Jason with us, as the dr. may well want to examine him to get a better idea about Jason. I'm glad he will be with us.
I have read a bit about this, and I believe the dystrpohy is a generic term. I'm seeing a lot of "Cone Disease" and "Bests Disease" but I really don't know enough to know anything. At this point, I think I am going to STOP investigating, b/c I dont' like what I am reading, and dont' want to totally freak out about it. I had my breakdown on Sam Cooper Blvd this morning; now I have to assume "Taking care of business mode".
I would greatly appreciate your prayers for us. I dont' know what the outcome of all this will be. I know that it is all in God's hands. I know that this is happening for a reason. But, I would just assume it was not happening to my baby.
Elizabeth won the spelling bee at her school. As in, beat the entire school. She will compete regionally in March. :)
Jason is recovering nicely from his surgery on Christmas Eve. He is back to work and things are back to normal.
we are the "guinea pigs" for a new curriculum at church. One of our members has written a year long study and we are testing it out for him, and for Lifeway. We will read then entire Bible over the course of a year, and study it together as a church family. Changes are already visible, and we are all enjoying the study.
This leads us to Miss Amy Hope. We went for a basic eye check up the first week of the year. The dr. noticed something on her retina. he thought it was probably nothing, but wanted us to check on it to be sure. So, off we went to a retina specialist in Jackson. He said yes, there is definitely something in there, I think it's Stargardts, but I don't know for sure. Then we heard the sentence no parent wants to hear: Do you want to go to Vanderbilt or Lebohnner? After picking my jaw up off the floor, I decided on LeBohnner. He recommend a "Dr. A", a pediatric opthamologist, for us. After the doc left the room, the nurse said, "I shouldn't tell you this, but I have to. Dr. A has a horrible bedside manner. I used to work for Dr. Byrd, and many of our patients came to us as a result of not liking Dr. A. This is her name and number, if you decide to see her, tell her I said for her to see you." I thanked her, and went to make the appt with Dr. A, planning to discuss this with Jason when I got home. when I got to the appt desk, we discovered that Dr. A wouldn't even see Amy until APRIL. So, I said what about Vandy? One of the receptionists said, "Isn't there a Dr. Byrd in Memphis?" I jumped in and said "Oh, I've heard great things about her! Let's try that!" we saw her today, a week after we made the appointment. There is no doubt in my mind we were supposed to see this woman.
Anyway, she found something in Amy's eyes. A lot of something. She called it "retinal dystrophy". to be frank, it ain't good. We are going to see a dr. at Lebohnner specializing in Pediatric Hereditary Retinal Dystrophy on Thursday. I have been warned by Dr. Byrd that more than likely there will be another visit for testing, as it will have to be done under sedation. We also have to bring Jason with us, as the dr. may well want to examine him to get a better idea about Jason. I'm glad he will be with us.
I have read a bit about this, and I believe the dystrpohy is a generic term. I'm seeing a lot of "Cone Disease" and "Bests Disease" but I really don't know enough to know anything. At this point, I think I am going to STOP investigating, b/c I dont' like what I am reading, and dont' want to totally freak out about it. I had my breakdown on Sam Cooper Blvd this morning; now I have to assume "Taking care of business mode".
I would greatly appreciate your prayers for us. I dont' know what the outcome of all this will be. I know that it is all in God's hands. I know that this is happening for a reason. But, I would just assume it was not happening to my baby.
Monday, November 29, 2010
Short Amy-ism
Yesterday, while we were working in the yard, Amy came over to me, soaking wet.
This is the conversation that followed.
A: Come and see what I did to the carport.
Me: Will I be happy or sad?
A: sad
Me: Are you sure?
A: yes.
Me: Are you going to be in trouble?
A: No.
Me: Are you sure?
A: No.
Ok, so it was funny to me. :)
This is the conversation that followed.
A: Come and see what I did to the carport.
Me: Will I be happy or sad?
A: sad
Me: Are you sure?
A: yes.
Me: Are you going to be in trouble?
A: No.
Me: Are you sure?
A: No.
Ok, so it was funny to me. :)
Thursday, October 14, 2010
Amy and Kaiya's Concert
Amy and her BFF Kaiya gave me a concert last night in Mission Friends. :)
I have always enjoyed working with children, but I think I have really found my calling with Mission Friends. I really look forward to it. I guess it's b/c I have more time with them than on Sunday morning. Maybe b/c it's more laid back? We just have such a good time. Last night, we talked about hungry people in South Asia, and played Hungry Hungry Hippos. Whoever won shared their marbles with the one that didn't have as many.
Elizabeth was in Girl's Club. They made cookies. The do the coolest stuff in there!!! They bake, sew, learn about recycling, and of course learn a lot about Jesus. Such and awesome program. The kids LOVE it. They get little bages at the end of each year to show what all they have done.
Just thought I'd let you know a little bit about how great Northbrook Church is. :)
Monday, August 23, 2010
Meanwhile, back at the ranch....
Elizabeth asked Jesus into her heart on August 3, 2010. She will be baptized on Sept 1. We are VERY proud of her, and very excited! Jason is going to baptize her, which makes it even more special.
Yesterday, we went to the river. Jason and E were “practicing” the dunk, as E can be a bit nervous at times. She did great!!!
Last night, after we got home, I told E to go take a shower. Amy came out and informed the rest of us, “It’s time for Izzy to get BATHtized!!!!”
We go a new (to us) van a couple of weeks ago. The Equinox just wasn't big enough. :( I must admit, though, I'm enjoying the van more every day. I'd forgotten how much ROOM they have.
School is going well for both girls. E is in third grade (crazy!!!) and Amy is going to daycare twice a week. She LOVES it...the only problem we are having is that she wants to go every day!!! Maybe next year we will be able to afford it, but we just can't right now.
We are still adjusting to life without Papaw. It's hard, no doubt about it. Amy has written little songs about him and sings them. I think she handles it better than any of us. She's still young enough that she doesn't have any pre-concieved notions about what she should or should not do to handle her grief. I feel like my kids have had to deal with more death this year than any child should, especially at this age. It's amazing, though, the difference in a death you are prepared for and an unexpected one. It was VERY hard to loose Nanny, but there was no doubt that she is better off, and that she was ready to go. I can remember standing with her in the last few minutes literally crying outloud "God please take her!" With Papaw, we knew he was sick, but it was a total punch in the stomach to hear Memaw call and tell me the news. All I could think was I wanted everyone to go away and leave me alone, let me have my cry. Then, I had to go into "take control survivor mode". I had two kids to tell, and a husband who was stuck on the other side of the world who didn't know his Daddy was gone. Our entire world came to a grinding halt. Slowly, we are picking back up. It's been almost 3 months, unbelievably, and we are getting there. I'm still dealing with the loss of a man that I thought of as a second father, as is the rest of my family, but we are getting better. We talk about him often, and have a world of happy memories. But to quote Elizabeth, "It's not fair, Mama. He was supposed to be here until I grew up."
Ok, so this wasn't supposed to be a therapy session. Anyhow....
Yesterday, we went to the river. Jason and E were “practicing” the dunk, as E can be a bit nervous at times. She did great!!!
Last night, after we got home, I told E to go take a shower. Amy came out and informed the rest of us, “It’s time for Izzy to get BATHtized!!!!”
We go a new (to us) van a couple of weeks ago. The Equinox just wasn't big enough. :( I must admit, though, I'm enjoying the van more every day. I'd forgotten how much ROOM they have.
School is going well for both girls. E is in third grade (crazy!!!) and Amy is going to daycare twice a week. She LOVES it...the only problem we are having is that she wants to go every day!!! Maybe next year we will be able to afford it, but we just can't right now.
We are still adjusting to life without Papaw. It's hard, no doubt about it. Amy has written little songs about him and sings them. I think she handles it better than any of us. She's still young enough that she doesn't have any pre-concieved notions about what she should or should not do to handle her grief. I feel like my kids have had to deal with more death this year than any child should, especially at this age. It's amazing, though, the difference in a death you are prepared for and an unexpected one. It was VERY hard to loose Nanny, but there was no doubt that she is better off, and that she was ready to go. I can remember standing with her in the last few minutes literally crying outloud "God please take her!" With Papaw, we knew he was sick, but it was a total punch in the stomach to hear Memaw call and tell me the news. All I could think was I wanted everyone to go away and leave me alone, let me have my cry. Then, I had to go into "take control survivor mode". I had two kids to tell, and a husband who was stuck on the other side of the world who didn't know his Daddy was gone. Our entire world came to a grinding halt. Slowly, we are picking back up. It's been almost 3 months, unbelievably, and we are getting there. I'm still dealing with the loss of a man that I thought of as a second father, as is the rest of my family, but we are getting better. We talk about him often, and have a world of happy memories. But to quote Elizabeth, "It's not fair, Mama. He was supposed to be here until I grew up."
Ok, so this wasn't supposed to be a therapy session. Anyhow....
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