This was the week we have been anticipating since last summer! On Tuesday, Rebekah had her eye appointment with her new doctor and today, her repeat echo cardiogram.
On Monday, Casey, Rebekah and I headed down to UIC and were able to stay in their IMD (Illinois Medical District) housing for a discounted rate. It was a dorm suite, but for Rebekah it was a hotel and the greatest thing ever! She was sooo excited and told me she wished we lived in a hotel!
On Tuesday morning we checked out of our 'hotel' and headed to the Ophthalmologist. We met with the new doctor and Dr. Maumenee, the doctor who gave us the correct diagnosis for Rebekah last July! Rebekah's eyes are doing great and they changed the prescription in the left lens of her glasses. Doing this should help her see a line or 2 better. Which means, instead of her vision being 20/80, it should bring her to 20/70-20/60 with the left eye. Her right eye is still at about 20/25. The goal is to get the vision in the two eyes as close as possible and to continue patching her good eye for 3-4 hours a day to keep the "weak" eye strong. As we have said before, Rebekah will most likely need both of her lenses removed at some point, but it could be 20 years from now. And....who knows what advances could be made in that time! YAHOOO!!!!!! So, our next steps with her eyes are to get her new glasses, keep patching and follow up with the doctors again in Decemeber.
Today, Grandma Lebar, Casey, Rebekah, Aaron and I headed down to the new Lurie Children's Hospital. We didn't get to see much of it because we had to get back to Crystal Lake for Rebekah's 1st summer art class, which she loved...of course. We took the train to Chicago. Aaron (Mr. I love anything train) was beyond excited and enjoyed watching out the window! Today was the day we were greatly anticipating...her repeat echo cardiogram. Since the Marfan diagnosis was disproved by Dr. Maumenee late last summer, we had high hopes that everything would be fine with her Echo.... WE WERE RIGHT. The was one measurement that could have been considered slightly above normal, but no worry to us or the cardiologist. She told us Rebekah can do any activities she wants and, though she doesn't want to release her from follow-up yet, she doesn't have to come back for 2 years! YAY!!!!
Also, after talking with the cardiologist, who we totally love, it could also be that after Casey is followed for a couple years, that his slightly above normal numbers, could just be Casey's "normal"!!! YAY AGAIN!!!!!!
So, what do we say now? After Rebekah's eye appointment on Tuesday, I came home and emailed Dr. Maumenee to thank her for being such a blessing in our lives. I started thinking about the Marfan diagnosis again and I started sobbing. Not because I was sad, but because I was relieved. I felt a weight lifted off my shoulders. Had Rebekah never had that diagnosis, we wouldn't have found Dr. Maumenee. This means we may have had her lens removed prematurely and we wouldn't have the correct diagnosis and would probably be worrying a lot more. Dr. Maumenee is an angel in our lives and we are so grateful to her and her help in getting the best doctors and the best care for our sweet, sweet Rebekah; who (she would want me to tell you), is officially a 1st grader now!!! WOW!!!
Thank you to ALL our family, friends and followers who have encouraged and supported us! We are sooo blessed to have so much love in our lives. Enjoy your summer and I will update again when there is more to tell.
Thursday, June 14, 2012
Monday, April 2, 2012
Good Times!
I can't believe we are already a quarter of the way through 2012! So far, it has been a good year with lots of blessings!
Casey:
He had his follow up MRI of his heart and there was 'No Change' and doesn't have to go back for a year! YAY! We were very excited to get this news. His back is healing up nicely after surgery last fall and aside from a little stiffness here and there, is pretty much back to normal. He has started another semester of school and is working hard each week to do well in his classes!
Rebekah:
Her next eye appointment and echocardiogram is scheduled for June, so there is nothing to report on that side of life. However, she did start Kindergarten in January! Besides a couple rough mornings in the beginning for both her and ME, she has adjusted amazingly well! She has started reading chapter books, or should I say, flying through them! She is still ahead of where she should be as a kindergartener, but has a wonderful teacher who is creating new opportunities for her to learn. Most importantly, she really enjoys it! We are so glad we made the decision to start her early!
Aaron:
Well, he had his first trip to the ER 3 days before Christmas to get stitches in his lip after falling and putting his tooth through it. It was the worst experience to see him go through that, but both he and I survived...it was a good thing Daddy came along; he was definitely the strong one! Aaron is also making great strides and learning lots. He knows his ABC's and can recognize and point out letters when he sees them! We often hear "S-T-O-P spells STOP"! It is pretty cute! He is also, I am proud to say, pretty much potty trained at 2 1/2!!!!!! YAY!!!!
As for me there is nothing new to report on. I am just trying to keep our household running smoothly as our lives getting busier by the day! Thanks for checking in with us and I hope 2012 is going well for everyone! I will update again after Rebekah's appointments in June.
Deanna
Casey:
He had his follow up MRI of his heart and there was 'No Change' and doesn't have to go back for a year! YAY! We were very excited to get this news. His back is healing up nicely after surgery last fall and aside from a little stiffness here and there, is pretty much back to normal. He has started another semester of school and is working hard each week to do well in his classes!
Rebekah:
Her next eye appointment and echocardiogram is scheduled for June, so there is nothing to report on that side of life. However, she did start Kindergarten in January! Besides a couple rough mornings in the beginning for both her and ME, she has adjusted amazingly well! She has started reading chapter books, or should I say, flying through them! She is still ahead of where she should be as a kindergartener, but has a wonderful teacher who is creating new opportunities for her to learn. Most importantly, she really enjoys it! We are so glad we made the decision to start her early!
Aaron:
Well, he had his first trip to the ER 3 days before Christmas to get stitches in his lip after falling and putting his tooth through it. It was the worst experience to see him go through that, but both he and I survived...it was a good thing Daddy came along; he was definitely the strong one! Aaron is also making great strides and learning lots. He knows his ABC's and can recognize and point out letters when he sees them! We often hear "S-T-O-P spells STOP"! It is pretty cute! He is also, I am proud to say, pretty much potty trained at 2 1/2!!!!!! YAY!!!!
As for me there is nothing new to report on. I am just trying to keep our household running smoothly as our lives getting busier by the day! Thanks for checking in with us and I hope 2012 is going well for everyone! I will update again after Rebekah's appointments in June.
Deanna
Friday, December 16, 2011
Wow... what a year!!!!
It has been a long year in the Reeves' household for 2011.
To recap, it kind of looked like this: recommending eye surgery for Rebekah, Marfan Syndrome diagnosis, enlarged aorta diagnosis for Casey, taking back the Marfan diagnosis with a new diagnosis of Ectopia Lentis et Pupillae, deciding on NO surgery for Rebekah, loss of a great bookstore and a 10 year job at Borders for Deanna, Casey's back goes out and has weeks attempting epidural injections, failed injections lead to back surgery.....I think I have covered it all! - I hope!
They say that what doesn't kill you makes you stronger, right? Well, we survived so we must be stronger now.
After these many months of a very long rollercoaster ride, I am so excited to say we have ended the year on 2 very exciting and proud accomplishments!
Last week, Casey graduated with his Associates in Business Management from McHenry County College! There are several reasons for this being so wonderful.
1. It is not easy to go to school while working full time and having a family with small children, but to do it with high honors is amazing! It takes a lot of work and time away, but he did it.
2. It means that we are at the half way mark. He will continue to take classes and will be working towards his bachelor's degree.
3. He is the 1st person in his family to have a college degree! Congratulations on starting a new trend in the Reeves family!
To recap, it kind of looked like this: recommending eye surgery for Rebekah, Marfan Syndrome diagnosis, enlarged aorta diagnosis for Casey, taking back the Marfan diagnosis with a new diagnosis of Ectopia Lentis et Pupillae, deciding on NO surgery for Rebekah, loss of a great bookstore and a 10 year job at Borders for Deanna, Casey's back goes out and has weeks attempting epidural injections, failed injections lead to back surgery.....I think I have covered it all! - I hope!
They say that what doesn't kill you makes you stronger, right? Well, we survived so we must be stronger now.
After these many months of a very long rollercoaster ride, I am so excited to say we have ended the year on 2 very exciting and proud accomplishments!
Last week, Casey graduated with his Associates in Business Management from McHenry County College! There are several reasons for this being so wonderful.
1. It is not easy to go to school while working full time and having a family with small children, but to do it with high honors is amazing! It takes a lot of work and time away, but he did it.
2. It means that we are at the half way mark. He will continue to take classes and will be working towards his bachelor's degree.
3. He is the 1st person in his family to have a college degree! Congratulations on starting a new trend in the Reeves family!
Congratulations Casey! We are so proud of you!
Now on to our 2nd piece of big news! Most of you who have ever met Rebekah know how bright she is! Well, after having some testing done, it has been confirmed that she is FAR ahead of where most kids her age are at. She is reading at a 3rd grade level and is at a 1st or 2nd grade level in most of the other areas tested. That being said, she will be starting kindergarten in January!
We knew it was coming, but now that the offical word has come in and is confirmed, it makes it so much more real. When she was born in November, my first thought was that I would be able to keep her around for an extra year because she would miss the deadline... well, she sure did prove me wrong. As ready as she is to start kindergarten, I can't believe my baby girl is soooo big already. Rebekah is one of the most amazing little girls and we are so proud of her. We can't wait to see all the great things she is going to accomplish!
It has been quite a year for us and we are so happy to end it on such a positive note, but we want to say thank you to all of you who have been supporting us in so many ways. We couldn't have gotten through it all with out you! We are truly blessed for all the wonderful people in our lives!
And for those of you who are wondering how Aaron is doing... the answer is: Great! He is keeping us on our toes and growing as little boys should!
Love,
Casey, Deanna, Rebekah and Aaron
Tuesday, November 8, 2011
Back to the Back
Casey has had 2 epidural injections over the past several weeks and unfortunately they did not prove to work. He is still in a lot of pain. He is scheduled for back surgery on Monday, November 14. Please keep him in your prayers to get through the next 5 days until he can get some relief.
Thanks for your support!
Deanna
Thanks for your support!
Deanna
Friday, October 14, 2011
Good News and More Prayers
The Good News
Aaron had his 1st echo cardiogram yesterday and did GREAT! He was still and very cooperative! The best part of the day was to find out that everything with his heart is NORMAL!! Yahoo!!! He does not have to have a follow up for 3-5 years! We are very grateful for this news!
More Prayers Needed
As some of you know Casey had surgery to fix a herniated disc is his lower back 5 1/2 years ago. The past several weeks he has been having some pain in his back. This past week the pain has been excruciating for him. He had an MRI and found out the disc is herniated again. The doctor wants him to have an epidural injection to see if they can fix things that way. If this works, then GREAT; if not, we will be talking back surgery again. So, please, if I can ask for more prayers; keep Casey in mind and lets hope he can get through this without having to go the surgery route!
I hope all is going well with everyone and you are enjoying this beautiful fall!
Thank you again for all your prayers and support - we are definitely feeling all of them!!
Love,
Deanna
Aaron had his 1st echo cardiogram yesterday and did GREAT! He was still and very cooperative! The best part of the day was to find out that everything with his heart is NORMAL!! Yahoo!!! He does not have to have a follow up for 3-5 years! We are very grateful for this news!
More Prayers Needed
As some of you know Casey had surgery to fix a herniated disc is his lower back 5 1/2 years ago. The past several weeks he has been having some pain in his back. This past week the pain has been excruciating for him. He had an MRI and found out the disc is herniated again. The doctor wants him to have an epidural injection to see if they can fix things that way. If this works, then GREAT; if not, we will be talking back surgery again. So, please, if I can ask for more prayers; keep Casey in mind and lets hope he can get through this without having to go the surgery route!
I hope all is going well with everyone and you are enjoying this beautiful fall!
Thank you again for all your prayers and support - we are definitely feeling all of them!!
Love,
Deanna
Sunday, September 18, 2011
Everything Happens for a Reason
I am going to do my best to give you all the new information we have; hopefully without being too confusing. If you remember from my last post we had another genetic test done on Rebekah because the Marfan Ophthalmologist we saw thought Rebekah had a different disorder. Well, the results are in....
Rebekah does NOT have Marfan Syndrome. She has a disorder called Ectopia Lentis et Pupillae which is very rare. This disorder ONLY affects her eyes. This could potentially be a huge relief for us because it means that the dilation in her aorta could stabilize and never get worse, or it could normalize and she may never have any issues. However, because Casey has dilation in his aorta as well; it also means that Rebekah may just have 2 separate issues going on. Basically, we will still proceed as before and she will have another echo cardiogram next June and we will just keep watch on it year after year.
Again, because Casey has the dilation, Genetics is recommending Aaron have an echo cardiogram now instead of waiting, so they have a baseline to go off of for him.
There was a part of us that was a little angry with having been told our daughter has Marfan Syndrome, only to find out a few months later that she does not. We went through a lot wondering what a future of Marfan would look like for our little girl and our family. Then we really thought about it all and now can see how it has all happened for a reason and brought us right where we need to be.
Every person has a pair of each gene in his/her DNA. In order for for a mutation to occur in Rebekah for Ectopia Lentis et Pupillae, it means that both Casey and I have one defective gene in our pair. Then, even with that, she had a 25% chance of having the mutation to cause the condition. WOW... crazy odds huh? That Casey and I both have a defective gene for this rare disorder and then that she only had 1 in 4 chances of getting it!
IF...
Casey hadn't married me and my defective gene; Rebekah hadn't gone against the odds and contracted the mutation; Rebekah's eye hadn't started wandering; Rebekah hadn't show dilation in her heart and received the Marfan diagnosis...
THEN...
We may have not second guessed the surgery; we may not have gone looking for another opinion with the Marfan Ophthalmologist, who ultimately gave us the correct diagnosis; Casey would not have found out about his heart.
We are grateful and blessed that we will still be able to use the National Marfan Foundation for information and help because they also support related disorders. We will still be at Children's Memorial for Rebekah's Cardiac check ups. Our only concern now is finding an Ophthalmologist who is familiar with this new condition. The Doctor who diagnosed her is only in research and not currently seeing patients. She is however, helping us find a new Ophthalmologist, who may be more familiar with Rebekah's condition.
So, waiting year after year for each of Rebekah's echo cardiograms and Casey's too, will be daunting, but we will wait and know that our journey this far has brought us to the exact spot we are supposed to be in. We are learning patience, trust and that everything happens for a reason; we just don't always find out why right away.
Most of us are always trying to be so perfect; to do the right thing; to say the right thing; to act the right way; to look the right way. We don't want our differences to stand out or our faults to show, but it was Casey and my 'defects' that came together to lead to the series of events that may have saved his life!
Thank you all so much for your prayers, love and support. We are in a pretty good place with all this and are learning how to move forward with all our new information. I will put a brief update after Aaron's Echo cardiogram, which we will probably do in the next month. Other than that, I am hoping we will not have any new information to share until Casey has his MRI in February and Rebekah's Echo next June. Of course, if anything comes up in between, we will definitely keep everything updated, but we are hoping for several uneventful and quiet months after the last few crazy ones.
Love,
Deanna, Casey, Rebekah and Aaron
Rebekah does NOT have Marfan Syndrome. She has a disorder called Ectopia Lentis et Pupillae which is very rare. This disorder ONLY affects her eyes. This could potentially be a huge relief for us because it means that the dilation in her aorta could stabilize and never get worse, or it could normalize and she may never have any issues. However, because Casey has dilation in his aorta as well; it also means that Rebekah may just have 2 separate issues going on. Basically, we will still proceed as before and she will have another echo cardiogram next June and we will just keep watch on it year after year.
Again, because Casey has the dilation, Genetics is recommending Aaron have an echo cardiogram now instead of waiting, so they have a baseline to go off of for him.
There was a part of us that was a little angry with having been told our daughter has Marfan Syndrome, only to find out a few months later that she does not. We went through a lot wondering what a future of Marfan would look like for our little girl and our family. Then we really thought about it all and now can see how it has all happened for a reason and brought us right where we need to be.
Every person has a pair of each gene in his/her DNA. In order for for a mutation to occur in Rebekah for Ectopia Lentis et Pupillae, it means that both Casey and I have one defective gene in our pair. Then, even with that, she had a 25% chance of having the mutation to cause the condition. WOW... crazy odds huh? That Casey and I both have a defective gene for this rare disorder and then that she only had 1 in 4 chances of getting it!
IF...
Casey hadn't married me and my defective gene; Rebekah hadn't gone against the odds and contracted the mutation; Rebekah's eye hadn't started wandering; Rebekah hadn't show dilation in her heart and received the Marfan diagnosis...
THEN...
We may have not second guessed the surgery; we may not have gone looking for another opinion with the Marfan Ophthalmologist, who ultimately gave us the correct diagnosis; Casey would not have found out about his heart.
We are grateful and blessed that we will still be able to use the National Marfan Foundation for information and help because they also support related disorders. We will still be at Children's Memorial for Rebekah's Cardiac check ups. Our only concern now is finding an Ophthalmologist who is familiar with this new condition. The Doctor who diagnosed her is only in research and not currently seeing patients. She is however, helping us find a new Ophthalmologist, who may be more familiar with Rebekah's condition.
So, waiting year after year for each of Rebekah's echo cardiograms and Casey's too, will be daunting, but we will wait and know that our journey this far has brought us to the exact spot we are supposed to be in. We are learning patience, trust and that everything happens for a reason; we just don't always find out why right away.
Most of us are always trying to be so perfect; to do the right thing; to say the right thing; to act the right way; to look the right way. We don't want our differences to stand out or our faults to show, but it was Casey and my 'defects' that came together to lead to the series of events that may have saved his life!
Thank you all so much for your prayers, love and support. We are in a pretty good place with all this and are learning how to move forward with all our new information. I will put a brief update after Aaron's Echo cardiogram, which we will probably do in the next month. Other than that, I am hoping we will not have any new information to share until Casey has his MRI in February and Rebekah's Echo next June. Of course, if anything comes up in between, we will definitely keep everything updated, but we are hoping for several uneventful and quiet months after the last few crazy ones.
Love,
Deanna, Casey, Rebekah and Aaron
Tuesday, August 9, 2011
Expect the Unexpected
Soooo... where do I begin.
We were able to get an appointment with the Ophthalmologist who specializes in Marfan Sydrome very quickly. Rebekah, Casey and I took the train to Chicago a couple weeks ago for the appointment. It was much better than the stress of driving and parking and a great diversion for Rebekah. She loved that she didn't have to be in a car seat. We were also able to take her to Millennium Park to see the bean and play in the fountain. We left this appointment confident in one decision and totally confused with other information we received.
I will start by saying we are totally confident in the fact that we are going to hold off on eye surgery for a while. Hopefully this wont have to happen until she is a teenager. Rebekah will need to have her lenses removed at some point in her life. She is currently in the best prescription possible for her, but in the left eye that is not saying too much because she still can't see very well at all. However, her vision is very correctable in her right eye and when the 2 eyes work together she functions extremely well.
Ok, so on to our confusion...This Ophthalmologist, Dr. Maumenee, who has seen thousands of Marfan patients and is board certified in medical genetics, thinks that based on the shape of Rebekah's lenses, the way they are shifted in her eyes and a few other things, that it is possible that Rebekah could have a different genetic disorder called Ectopia Lentis et Pupillae. HUH??? This disorder would only affect her eyes, which doesn't account for the dilation in her heart but something else we now have to look at. We are in the process of getting paperwork filled out to have more genetic testing done for this disorder. So, before I give you my conclusion for all of this let me tell you about the rest of that week.
If you remember, in one of our past posts, I said that Casey and I had to have Echo cardiograms to make sure we were "OK". Long story short (as short as I can). My echo came back normal. Casey's echo showed that his aortic root was measuring on the high side of normal. Because Marfan Syndrome is still a question we needed to get this further checked out. Two days after Rebekah's appointment, Casey and I got back on the train and went to Northwestern Memorial Hospital to see an adult cardiologist. She was not concerned with anything she saw during his exam but wanted him to have a MR done to get a more accurate picture of his heart. Needless to say, they couldn't get him in that same day so 3 days later, Casey got on the train once again and headed down for his 1 1/2 hour test in the tight tube of an MRI machine. These scans showed that Casey has mild dilation in his ascending aorta and aortic root (where the aorta meets the heart). The cardiologist is starting him on beta blockers to slow his heart rate and blood pressure so the heart doesn't have to work so hard to pump the blood and in essence, slows the dilation process. He will have another MR done in 6 months. If there is no increase in dilation then he will just go for regular maintenance exams and scans every 6 months to 1 year. If there is an increase, then other options will be looked at. So, in the mean time, please don't call Casey to help you move all your heavy furniture or be your spotter as you bench press 200 pounds.
So, to conclude we have a couple options...
1. Casey also may have Marfan Syndrome
2. Rebekah has just this eye issue and there is some other genetic heart disorder that is affecting both of them.
3. ???? Leaving it open because it seems like the unexpected has been popping up a lot lately!
I know you all are already doing this, but please keep the loves of my life in your thoughts and prayers! Now it will be a waiting game again until we can get this other genetic test done for Rebekah and then wait to see what Casey's scans say in another 6 months.
To end on a positive note, we are looking at it like this... Rebekah may have just saved her Daddy's life and for that we are GRATEFUL!
Love,
Deanna
We were able to get an appointment with the Ophthalmologist who specializes in Marfan Sydrome very quickly. Rebekah, Casey and I took the train to Chicago a couple weeks ago for the appointment. It was much better than the stress of driving and parking and a great diversion for Rebekah. She loved that she didn't have to be in a car seat. We were also able to take her to Millennium Park to see the bean and play in the fountain. We left this appointment confident in one decision and totally confused with other information we received.
I will start by saying we are totally confident in the fact that we are going to hold off on eye surgery for a while. Hopefully this wont have to happen until she is a teenager. Rebekah will need to have her lenses removed at some point in her life. She is currently in the best prescription possible for her, but in the left eye that is not saying too much because she still can't see very well at all. However, her vision is very correctable in her right eye and when the 2 eyes work together she functions extremely well.
Ok, so on to our confusion...This Ophthalmologist, Dr. Maumenee, who has seen thousands of Marfan patients and is board certified in medical genetics, thinks that based on the shape of Rebekah's lenses, the way they are shifted in her eyes and a few other things, that it is possible that Rebekah could have a different genetic disorder called Ectopia Lentis et Pupillae. HUH??? This disorder would only affect her eyes, which doesn't account for the dilation in her heart but something else we now have to look at. We are in the process of getting paperwork filled out to have more genetic testing done for this disorder. So, before I give you my conclusion for all of this let me tell you about the rest of that week.
If you remember, in one of our past posts, I said that Casey and I had to have Echo cardiograms to make sure we were "OK". Long story short (as short as I can). My echo came back normal. Casey's echo showed that his aortic root was measuring on the high side of normal. Because Marfan Syndrome is still a question we needed to get this further checked out. Two days after Rebekah's appointment, Casey and I got back on the train and went to Northwestern Memorial Hospital to see an adult cardiologist. She was not concerned with anything she saw during his exam but wanted him to have a MR done to get a more accurate picture of his heart. Needless to say, they couldn't get him in that same day so 3 days later, Casey got on the train once again and headed down for his 1 1/2 hour test in the tight tube of an MRI machine. These scans showed that Casey has mild dilation in his ascending aorta and aortic root (where the aorta meets the heart). The cardiologist is starting him on beta blockers to slow his heart rate and blood pressure so the heart doesn't have to work so hard to pump the blood and in essence, slows the dilation process. He will have another MR done in 6 months. If there is no increase in dilation then he will just go for regular maintenance exams and scans every 6 months to 1 year. If there is an increase, then other options will be looked at. So, in the mean time, please don't call Casey to help you move all your heavy furniture or be your spotter as you bench press 200 pounds.
So, to conclude we have a couple options...
1. Casey also may have Marfan Syndrome
2. Rebekah has just this eye issue and there is some other genetic heart disorder that is affecting both of them.
3. ???? Leaving it open because it seems like the unexpected has been popping up a lot lately!
I know you all are already doing this, but please keep the loves of my life in your thoughts and prayers! Now it will be a waiting game again until we can get this other genetic test done for Rebekah and then wait to see what Casey's scans say in another 6 months.
To end on a positive note, we are looking at it like this... Rebekah may have just saved her Daddy's life and for that we are GRATEFUL!
Love,
Deanna
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