A few different things on my mind today, the first we had the meeting with everyone at the school. We discussed all the things Isa would need help with at school. The school is looking for a person who can assist her, with moving from place to place and toileting. We also discussed how we would have Isa keep up with all her school work while recovering at home. The teacher already rearranged the seating arrangement in class so that Isa can have easier access to her table. She is now seated right by the door at the highest table. The teacher said she wanted to move her well in advance so that she wouldn't feel that she was having to move strictly because of her wheelchair, one less thing for her to worry about. The teacher has already planned on making get well cards with her classmates for Isa to have while in the hospital, I thought this was super sweet! The nurse will also be talking to the class once Isa is out for surgery about kindness and understanding. They will be explained what is going to happen to Isa and to expect her in her wheelchair. This is something that truthfully I hadn't even thought about! It is nice that someone had it covered already!
Secondly, I found a new friend at Isa's school whose baby has two casts like Isa will have! How wonderful the way things work ;-) I can't say that I have ever seen or met in the past someone with two full leg casts and now I had! She was friendly and very helpful. I met her the first week of school. Her baby has casts on for different reasons other than Isa will, but nonethe less she was able to answer some questions and provided much needed comfort, yay! The baby is an adorable lively little fella:-) I met him three days after he had surgery and he was so happy and was even doing some kicking!!! This made me feel so comforted knowing that Isa wasn't going to be completely miserable and unable to move while in such large casts. She did note that pain relief was key for her and her baby, something for us to keep in mind. I also questioned the ease of dressing a child with the casts, she said that since it is HOT and he is so little usually he lounges with just shirts or onesies. but suggested in my case dresses. At first I considered asking grandma to make some special dresses. However grandma is already making comfy but very cute pajamas for her first week post op (and also for her American Girl Doll !)and after looking into the cost of fabric and the time it takes to make it, I figured that I might as well just buy some wide bottom dresses. Overall, I am just extremely happy to have met the baby who has provided strength and comfort. I see him being so happy and playful and innterupted by his casts that it gives me not only comfort but also strength for Isa.
Lastly, the past few weeks since Isa started school I have been crazy busy :-p Now that school has started we also started our other extracurricular activites. Isa has ballet for a few weeks until surgery, she also will be starting religous education classes soon. Max has storytime, a art class, and both kiddos have piano class. I also do some homeschooling for Max so that he is well prepared for Kindergarten. Not to mention I also have signed up for a few volunteer things at Isa's school. I have things to do almost EVERYDAY, including weekends! Which is great I am not complaining after all I signed up for it all but I just need to get used to my schedule and fit working out somewhere in all this. I need MOTIVATION and LOTS of it to start working out. I always seem to start and then within a few weeks lose the motivation and it loses priority. I need to, I have to, find the motivation and make it a priority!!!
Wednesday, August 29, 2012
Friday, August 24, 2012
Getting Everything Ready At School
We informed the principal, the teacher, and nurse assistant on the very first day of school to expect Isa in a wheelchair for a few weeks. We met with the principal again the other day to make sure everything is going to be ready for Isa. She said they are going to make sure that Isa has accessibility to the whole school in her wheelchair, yay!!! My second biggest concern was her going to the bathroom and this was discussed as well. The head school nurse was going to call me and set up a plan for her.
Later that afternoon the nurse called me and said that the school was going to have somebody train to help Isa go to the bathroom. It made me feel better knowing that Isa would not have to stress or possibly get hurt trying to go to the bathroom without help. I feel reassured about someone helping her but at the same time I have to say that there is some worry. I am just so protective of my baby and for good reason because you just never know! I have talked to Isa about making sure that she knows that NO ONE is allowed to touch her and to IMMEDIATELY tell a grown up IF someone ever tries to. Hopefully I am just overworrying about it! It did calm me down to know that I would be the one training the person with how I want things done :-) The nurse explained to me that a 504 Plan would need to be drawn up for her. She explained to be that by law they would need to make sure that Isa is able to attend school in her wheelchair and have help. Here is a link for a website that further explains a 504 Plan. http://specialchildren.about.com/od/504s/f/504faq1.htm We will have an appointment once the 504 Plan is written and the teacher, the head nurse, the principal, and the specialist who writes those sort of plans will all meet with us to make sure that everything is covered in the plan to get school ready for her.
It made me feel good about the fact that I was not asking the school for something above and beyond, that it is actually something required by law. Although regardless of whether it is required by law or not I would have asked for it but this way I don't feel pushy!!! I do have to say that the school has been great about communicating with me and making me feel at ease about Isa going to school in her wheelchair!!!
Later that afternoon the nurse called me and said that the school was going to have somebody train to help Isa go to the bathroom. It made me feel better knowing that Isa would not have to stress or possibly get hurt trying to go to the bathroom without help. I feel reassured about someone helping her but at the same time I have to say that there is some worry. I am just so protective of my baby and for good reason because you just never know! I have talked to Isa about making sure that she knows that NO ONE is allowed to touch her and to IMMEDIATELY tell a grown up IF someone ever tries to. Hopefully I am just overworrying about it! It did calm me down to know that I would be the one training the person with how I want things done :-) The nurse explained to me that a 504 Plan would need to be drawn up for her. She explained to be that by law they would need to make sure that Isa is able to attend school in her wheelchair and have help. Here is a link for a website that further explains a 504 Plan. http://specialchildren.about.com/od/504s/f/504faq1.htm We will have an appointment once the 504 Plan is written and the teacher, the head nurse, the principal, and the specialist who writes those sort of plans will all meet with us to make sure that everything is covered in the plan to get school ready for her.
It made me feel good about the fact that I was not asking the school for something above and beyond, that it is actually something required by law. Although regardless of whether it is required by law or not I would have asked for it but this way I don't feel pushy!!! I do have to say that the school has been great about communicating with me and making me feel at ease about Isa going to school in her wheelchair!!!
Monday, August 13, 2012
Pre Surgery Appointment
Please keep in mind that I am not a doctor and have no medical background. I am just writing based on my experiences and occasionally I may get things wrong.
We were very nervous and anxious about our pre-surgery appointment or as the doctor put it, it was our Q&A appointment. We decided to go to the appointment while Isa was at school so that we could freely discuss everything.
As with previous visits everyone was very friendly :) As you can imagine we had three pages worth of questions! I felt guilty about how much time we were taking about 45 minutes into the appointment but Dr. Vin said he was there for us and didn't have anywhere else he needed to be and would be there until we were all done with ALL the questions, what a relief!!!! This made me feel so reassured with the decision we made to pick him to be Isa's surgeon!
Some of the questions we asked included:
What exactly will be done?
A small incision will be made on the outer thigh slightly above her knee and the femur bone will be broken in order to realign them. Metal plates or pins will be used in order to keep the bones in place. The metal hardware is removed within six months in a minor outpatient procedure.
Why the femur as apposed to the hip bone?
Doing the femur in my opinion is better because doing the hip would require an almost full body cast.
The other doctor said he wouldn't put a cast on her, why?
In my opinion doing hip surgery without a cast is a risk for a child her age. A child needs a cast to prevent injury since they are not able to stay in mobile for that long.
How long will the surgery be?
About 2 hours
How long will she be in a cast?
For about a month
How much will be in a cast?
From mid thigh to past the ankle
How long will she be in the hospital?
On average for about 2-3 days, maybe longer maybe less
Will she be in a wheelchair?
Yes, for at least a month full time and then on and off for a month or so
When will we get thewheelchair?
We will send the prescription to the place that rents them and they will take care of the insurance stuff and deliver the chair to the hospital. The physical therapist in the hospital will make sure that the chair is the right fit for her if not they will change it out for her .
When will she start physical therapy and for how long?
She will start physical therapy when the cast come off and probably do it a few times a week for two months afterwards
Does the hospital have tours for kids?
Yes, and my office will help set that up
When will she be able to resume her normal activities?
Within 8 weeks post surgery she should be able to sign up for tackle football if you should choose to!
When will she be able to go back to school?
If the school is wheelchair accessible than as soon as she is off of narcotics
Those were some of the top questions but there were plenty more!
Jon and I felt so much better about the surgery having all of our questions answered and knowing that our doctor CARES! The fact that within 8 weeks she should be back to her regular activities is also very reassuring! I can't help but be amazed with how resilient a child can be!!
We are now ready to prepare for surgery and see where our journey leads us!
.
We were very nervous and anxious about our pre-surgery appointment or as the doctor put it, it was our Q&A appointment. We decided to go to the appointment while Isa was at school so that we could freely discuss everything.
As with previous visits everyone was very friendly :) As you can imagine we had three pages worth of questions! I felt guilty about how much time we were taking about 45 minutes into the appointment but Dr. Vin said he was there for us and didn't have anywhere else he needed to be and would be there until we were all done with ALL the questions, what a relief!!!! This made me feel so reassured with the decision we made to pick him to be Isa's surgeon!
Some of the questions we asked included:
What exactly will be done?
A small incision will be made on the outer thigh slightly above her knee and the femur bone will be broken in order to realign them. Metal plates or pins will be used in order to keep the bones in place. The metal hardware is removed within six months in a minor outpatient procedure.
Why the femur as apposed to the hip bone?
Doing the femur in my opinion is better because doing the hip would require an almost full body cast.
The other doctor said he wouldn't put a cast on her, why?
In my opinion doing hip surgery without a cast is a risk for a child her age. A child needs a cast to prevent injury since they are not able to stay in mobile for that long.
How long will the surgery be?
About 2 hours
How long will she be in a cast?
For about a month
How much will be in a cast?
From mid thigh to past the ankle
How long will she be in the hospital?
On average for about 2-3 days, maybe longer maybe less
Will she be in a wheelchair?
Yes, for at least a month full time and then on and off for a month or so
When will we get thewheelchair?
We will send the prescription to the place that rents them and they will take care of the insurance stuff and deliver the chair to the hospital. The physical therapist in the hospital will make sure that the chair is the right fit for her if not they will change it out for her .
When will she start physical therapy and for how long?
She will start physical therapy when the cast come off and probably do it a few times a week for two months afterwards
Does the hospital have tours for kids?
Yes, and my office will help set that up
When will she be able to resume her normal activities?
Within 8 weeks post surgery she should be able to sign up for tackle football if you should choose to!
When will she be able to go back to school?
If the school is wheelchair accessible than as soon as she is off of narcotics
Those were some of the top questions but there were plenty more!
Jon and I felt so much better about the surgery having all of our questions answered and knowing that our doctor CARES! The fact that within 8 weeks she should be back to her regular activities is also very reassuring! I can't help but be amazed with how resilient a child can be!!
We are now ready to prepare for surgery and see where our journey leads us!
.
Decision on Isa's leg Surgery
We thought about and discussed it not only amongst ourselves but also with the rest of our family and the decision that we came up with was to do surgery. It wasn't an easy one but after much prayer and discussion it was the right one for us. We didn't want to limit Isa's possibilities, we wanted to be able to have her make the decision of what she wanted to do and not struggle with walking or running. It is a decision that we would much rather not have to make but we do and we are ready to tackle it!
We decided to have surgery done with Dr. Vin, he is a highly qualified doctor and one that makes us feel at ease and one that cares about Isa and us.
We decided to have surgery done with Dr. Vin, he is a highly qualified doctor and one that makes us feel at ease and one that cares about Isa and us.
Second Opinion
Please keep in mind that I am not a doctor and have no medical background. I am just writing based on my experiences and occasionally I may get things wrong.
We went to another recommended pediatric orthopedic surgeon.
Once again I sat in a big unwelcoming building waiting to hear a second opinion. Isa as brave as usual. We both walked into the room (Jon was away on work and Max was with his uncles) and waited for the doctor. The doctor came in and introduced himself , he was polite but I didn't feel comforted. After a quick examination, there it was again, surgery! He unlike Dr. Vin suggested that she have surgery done on her hip since it is the bone where most of the rotation takes place. He wouldn't be putting a cast on her but would need her to be inmoble for much longer than a month. He also said we could try physical therapy just to make ME feel better, but it would not work for two reasons. One, that it would be trying to compensate a bone problem with a muscle. Second, because she was a child and would not be able to give her all because she wouldn't understand it. He gave all the information very rushed and very as a matter of fact. He said that we should condsider surgery because she would not be able to have any type of active life and even things like walking or running were a struggle for her. He also suggested that if I didn't want to do surgery than not to expose her to anything active so that later on in life she wouldn't feel like she was missing out on something because she had never been exposed to it. That made me feel very said to think that I should start blocking things from her inorder to help her not to want to participate later on in life and what about the keep your kids active stuff? I felt very discouraged after that conversation and it was obvious that he was not 100% child friendly because he used words like cut open and scar in front of my poor Isa who of course listened to every word he said.
She left feeling very terrified about being cut open and having scars. I managed to calm her down and asked her which doctor she liked better and she quickly responded Dr. Vin, the silly one! I felt the same way.
We went to another recommended pediatric orthopedic surgeon.
Once again I sat in a big unwelcoming building waiting to hear a second opinion. Isa as brave as usual. We both walked into the room (Jon was away on work and Max was with his uncles) and waited for the doctor. The doctor came in and introduced himself , he was polite but I didn't feel comforted. After a quick examination, there it was again, surgery! He unlike Dr. Vin suggested that she have surgery done on her hip since it is the bone where most of the rotation takes place. He wouldn't be putting a cast on her but would need her to be inmoble for much longer than a month. He also said we could try physical therapy just to make ME feel better, but it would not work for two reasons. One, that it would be trying to compensate a bone problem with a muscle. Second, because she was a child and would not be able to give her all because she wouldn't understand it. He gave all the information very rushed and very as a matter of fact. He said that we should condsider surgery because she would not be able to have any type of active life and even things like walking or running were a struggle for her. He also suggested that if I didn't want to do surgery than not to expose her to anything active so that later on in life she wouldn't feel like she was missing out on something because she had never been exposed to it. That made me feel very said to think that I should start blocking things from her inorder to help her not to want to participate later on in life and what about the keep your kids active stuff? I felt very discouraged after that conversation and it was obvious that he was not 100% child friendly because he used words like cut open and scar in front of my poor Isa who of course listened to every word he said.
She left feeling very terrified about being cut open and having scars. I managed to calm her down and asked her which doctor she liked better and she quickly responded Dr. Vin, the silly one! I felt the same way.
Femoral Anteversion Diagnosis
Please keep in mind that I am not a doctor and have no medical background. I am just writing based on my experiences and occasionally I may get things wrong.
We were on a hike about a month ago and we realized that Isa was having major issues walking. We had realized a few years ago that she had some in toeing but left it alone because of an earlier talk with a specialist. We noticed that Max, her little brother had a significant in toe and decided to take him to a specialist when he was two (he is now almost 5). The specialist Dr. Vin said that most kids outgrow this problem, something our pediatrician also said. Dr. Vin said that he thought Max was too young to decided anything yet, usually at about 5 is when you want to decide. He said that Max had a double dose of rotation since he had rotation in two of his bones. He said that unless a child has severe in toeing that causes him or her to slow down or fall than surgery should probably not be considered but it is a family choice that has to be made.
We decided to leave Max's in toeing alone since he was so young and see where it goes. So when we saw it in Isa we thought it would be same type of situation but that day while hiking we knew it had to be looked at. Jon and I started talking and realized that Isa did a lot of falling but we always attributed it to her clumsiness. We even made sure she wore pants each time she went out to her playground since she was very likely to fall. We came to the conclusion that it might not just be her clumsiness but also her in toeing.
We went to see Dr. Vin again this time for Isa. Dr. Vin is a pediatric orthopedic specialist and his office is small and very welcoming. Dr. Vin's bedside manner is remarkable. We felt confident upon walking into the doctors office hoping that we would get the same response that we got when we talked about Max. Within a few minutes of examination Dr. Vin explained to us that Isa had a very high dosage of rotation in her femur and hip bone. I felt the "cloud" once again over me. This was not going to be the same as with Max. Dr. Vin explained that her bone rotation was very extreme, usually a significant femur rotation is 45 degrees and Isa's is 90 degrees! He first clarified that braces and orthopedic shoes have not been proven to help with her problem. Dr. Vin said that usually he recommends that the problem be left to resolve on it's own or if it doesn't interfere with the child's life to leave it, however in her case she would probably continue to have problems with falling (but no more extreme than she was currently having) and will not be able to lead any type of active lifestyle. This news was heartbreaking, far more than the exotropia! I felt overwhelmed : ( He said that we should seriously consider surgery and that it would significantly help her. He said that if we decided to do surgery, he would be performing it in her femur bones. He would have to cut both femurs and realign them using pins that would later be removed. She would be in a cast from mid thigh to down past her ankles.
We left the office with very little to say. Jon and I knew that it would be a very difficult decision. We discussed the fact that we didn't want to put our baby through surgery but we also didn't want to limit her possibilities later on in life. She loves ballet and soccer and we knew that those would not be something she could continue. It wasn't a matter of wanting her to be an athlete or a dancer but anything like walking or running would be difficult for her. I even read somewhere that riding a bike was difficult for someone with her problem.
Here is a site that might be helpful
We were on a hike about a month ago and we realized that Isa was having major issues walking. We had realized a few years ago that she had some in toeing but left it alone because of an earlier talk with a specialist. We noticed that Max, her little brother had a significant in toe and decided to take him to a specialist when he was two (he is now almost 5). The specialist Dr. Vin said that most kids outgrow this problem, something our pediatrician also said. Dr. Vin said that he thought Max was too young to decided anything yet, usually at about 5 is when you want to decide. He said that Max had a double dose of rotation since he had rotation in two of his bones. He said that unless a child has severe in toeing that causes him or her to slow down or fall than surgery should probably not be considered but it is a family choice that has to be made.
We decided to leave Max's in toeing alone since he was so young and see where it goes. So when we saw it in Isa we thought it would be same type of situation but that day while hiking we knew it had to be looked at. Jon and I started talking and realized that Isa did a lot of falling but we always attributed it to her clumsiness. We even made sure she wore pants each time she went out to her playground since she was very likely to fall. We came to the conclusion that it might not just be her clumsiness but also her in toeing.
We went to see Dr. Vin again this time for Isa. Dr. Vin is a pediatric orthopedic specialist and his office is small and very welcoming. Dr. Vin's bedside manner is remarkable. We felt confident upon walking into the doctors office hoping that we would get the same response that we got when we talked about Max. Within a few minutes of examination Dr. Vin explained to us that Isa had a very high dosage of rotation in her femur and hip bone. I felt the "cloud" once again over me. This was not going to be the same as with Max. Dr. Vin explained that her bone rotation was very extreme, usually a significant femur rotation is 45 degrees and Isa's is 90 degrees! He first clarified that braces and orthopedic shoes have not been proven to help with her problem. Dr. Vin said that usually he recommends that the problem be left to resolve on it's own or if it doesn't interfere with the child's life to leave it, however in her case she would probably continue to have problems with falling (but no more extreme than she was currently having) and will not be able to lead any type of active lifestyle. This news was heartbreaking, far more than the exotropia! I felt overwhelmed : ( He said that we should seriously consider surgery and that it would significantly help her. He said that if we decided to do surgery, he would be performing it in her femur bones. He would have to cut both femurs and realign them using pins that would later be removed. She would be in a cast from mid thigh to down past her ankles.
We left the office with very little to say. Jon and I knew that it would be a very difficult decision. We discussed the fact that we didn't want to put our baby through surgery but we also didn't want to limit her possibilities later on in life. She loves ballet and soccer and we knew that those would not be something she could continue. It wasn't a matter of wanting her to be an athlete or a dancer but anything like walking or running would be difficult for her. I even read somewhere that riding a bike was difficult for someone with her problem.
Here is a site that might be helpful
Wednesday, August 8, 2012
Patching In Public & Update
Recently I have read the questions about patching in public and what to expect, well here is our experiences,
I know that it can be very difficult to deal with your little one's self consciousness while at the same time trying to make it as normal as possible. At first I didn't know whether or not to patch in public because I didn't want Isa to be made self conscious by other people. We had tried since she first started patching not to make a big deal about wearing the patch, but I couldn't help but worry. My husband Jon was the one who convinced me that I shouldn't be concerned and to just try to make it as normal as possible for her. There were occasions when out in public, people, especially adults would stare, point, or ask why she was wearing it. I tried to ignore the points and stares so that Isa wouldn't feel self conscious. I think that I noticed it a lot more than she did. When she did notice I would just tell her that maybe they were admiring her patch. I would remind her that she uses her patch to help her with her eyes and not everyone has it, so it maybe it is just something new to them. As for the questions, I would just say we were doing vision therapy and explain to her again that to some people it is something new. I would also remind her of her manners and remember that even if something is new to us doesn't mean we stare or point. As her mother it would frustrate me so much that adults were so rude and it made the situation harder for me to deal with just because I didn't want my little one to have to go through it. However most of the time Isa didn't even notice :)
For the most part we kept patching while at home just because we found that she would fall more often while being active or walking because she would lose some depth perception. We did however find that even if there were those "uncomfortable moments" while patching in public it was best to do it at least once in a while so that she understand that it was nothing that she had to hide or be ashamed of.
UPDATE:
Isa started full day school last week and is also fighting a cold so she has been very tired and unfortunately that means we have been seeing a lot more turning out of one of her eyes than we would like : ( I am still questioning whether we should have stopped the patching? I will wait at least until she is over her cold and a bit more adjusted with her new schedule to see whether or not I should call Dr. S and see what the next step in this journey is.
I know that it can be very difficult to deal with your little one's self consciousness while at the same time trying to make it as normal as possible. At first I didn't know whether or not to patch in public because I didn't want Isa to be made self conscious by other people. We had tried since she first started patching not to make a big deal about wearing the patch, but I couldn't help but worry. My husband Jon was the one who convinced me that I shouldn't be concerned and to just try to make it as normal as possible for her. There were occasions when out in public, people, especially adults would stare, point, or ask why she was wearing it. I tried to ignore the points and stares so that Isa wouldn't feel self conscious. I think that I noticed it a lot more than she did. When she did notice I would just tell her that maybe they were admiring her patch. I would remind her that she uses her patch to help her with her eyes and not everyone has it, so it maybe it is just something new to them. As for the questions, I would just say we were doing vision therapy and explain to her again that to some people it is something new. I would also remind her of her manners and remember that even if something is new to us doesn't mean we stare or point. As her mother it would frustrate me so much that adults were so rude and it made the situation harder for me to deal with just because I didn't want my little one to have to go through it. However most of the time Isa didn't even notice :)
For the most part we kept patching while at home just because we found that she would fall more often while being active or walking because she would lose some depth perception. We did however find that even if there were those "uncomfortable moments" while patching in public it was best to do it at least once in a while so that she understand that it was nothing that she had to hide or be ashamed of.
UPDATE:
Isa started full day school last week and is also fighting a cold so she has been very tired and unfortunately that means we have been seeing a lot more turning out of one of her eyes than we would like : ( I am still questioning whether we should have stopped the patching? I will wait at least until she is over her cold and a bit more adjusted with her new schedule to see whether or not I should call Dr. S and see what the next step in this journey is.
Thursday, August 2, 2012
Post Surgery
Please keep in mind that I am not a doctor and have no medical background. I am just writing based on my experiences and occasionally I may get things wrong.
A few weeks after surgery Jon and I had bittersweet feelings. We were happy because Isa had not experienced any double vision but was still experiencing the occasional outward drift in one of her eyes. We were worried as to what the next step was going to be, was the surgery not 100% succesful, would we have to do it again? We knew that having to reoperate was a very real possibility but we didn't want it to be so soon.
We both went to her next appointment. We were happy to hear that her prescription had changed for the better with the surgery and that surgery had been 100% succesful in one of her eyes!!! However, her other eye was still experiencing a slight misalignement but a definte improvement from prior to surgery. I have to admit that I did have some feelings of discouragment when Dr. S said one eye was not sucessful.
Dr. S. said that he thought patching would be enough to help the one eye. We had stopped patching post surgery because at the time everything seemed to be succesful. We allowed her to pick out a new patch. Dr. S's office has a pretty nice supply of them for sale in their optical department. Isa thought it was really cool that she didn't have to patch any more after surgery since she had already done it for so long, but since she is such a sweetheart she said she woudn't mind having to do it again. We were lucky that we got to wait to do the surgery until an age where she was able to get an idea of what was going on and understand it, at least on a basic level.
We patched post surgery since October of last year and two weeks ago we had our most recent appointment with Dr. S. Dr. S said everything looked great and that at least for now we could stop patching! Yay, we were so excited about this!!! However I was cautiosly optomistic because we have been there before and had to go back. I also worried that stopping the patching would make the problem worse so I felt hesitant to stop. However, I trust Dr. S, who is a wonderful doctor and like my friend said, "I guess if you don't stop you will never know if it works or not". This news couldn't have come at a better time. During this time we had just found out of anther medical condition that we would have to tackle with Isa, femoral anteversion surgery.
We don't have a follow up appointment with Dr. S for another five months which I pray brings good news. I am happy to report that so far we have only seen a drift once or twice since the appointment. Here is to hoping we can keep things moving foward but we will deal with whatever comes our way with much determination just like my sweet Isa! I can't say enough how proud I am of that little girl who started Kindergarden today:) She has been a strong and brave girl through all of this. I get my courage from her strength!
A few weeks after surgery Jon and I had bittersweet feelings. We were happy because Isa had not experienced any double vision but was still experiencing the occasional outward drift in one of her eyes. We were worried as to what the next step was going to be, was the surgery not 100% succesful, would we have to do it again? We knew that having to reoperate was a very real possibility but we didn't want it to be so soon.
We both went to her next appointment. We were happy to hear that her prescription had changed for the better with the surgery and that surgery had been 100% succesful in one of her eyes!!! However, her other eye was still experiencing a slight misalignement but a definte improvement from prior to surgery. I have to admit that I did have some feelings of discouragment when Dr. S said one eye was not sucessful.
Dr. S. said that he thought patching would be enough to help the one eye. We had stopped patching post surgery because at the time everything seemed to be succesful. We allowed her to pick out a new patch. Dr. S's office has a pretty nice supply of them for sale in their optical department. Isa thought it was really cool that she didn't have to patch any more after surgery since she had already done it for so long, but since she is such a sweetheart she said she woudn't mind having to do it again. We were lucky that we got to wait to do the surgery until an age where she was able to get an idea of what was going on and understand it, at least on a basic level.
We patched post surgery since October of last year and two weeks ago we had our most recent appointment with Dr. S. Dr. S said everything looked great and that at least for now we could stop patching! Yay, we were so excited about this!!! However I was cautiosly optomistic because we have been there before and had to go back. I also worried that stopping the patching would make the problem worse so I felt hesitant to stop. However, I trust Dr. S, who is a wonderful doctor and like my friend said, "I guess if you don't stop you will never know if it works or not". This news couldn't have come at a better time. During this time we had just found out of anther medical condition that we would have to tackle with Isa, femoral anteversion surgery.
We don't have a follow up appointment with Dr. S for another five months which I pray brings good news. I am happy to report that so far we have only seen a drift once or twice since the appointment. Here is to hoping we can keep things moving foward but we will deal with whatever comes our way with much determination just like my sweet Isa! I can't say enough how proud I am of that little girl who started Kindergarden today:) She has been a strong and brave girl through all of this. I get my courage from her strength!
Wednesday, August 1, 2012
Exotropia Surgery
Please keep in mind that I am not a doctor and have no medical background. I am just writing based on my experiences and occasionally I may get things wrong.
I decided to write this part as honest as possible including all the emotions that we experienced so that you may have an idea of what we went through, but keep in mind your experience may be completely different.
We scheduled a day in early October for surgery and started prepping not only Isa for it but also ourselves, Jon and I. Jon made arrangements so that he could take a few days off in order to travel back home for the surgery. Isa, Max, and I traveled a few days earlier than Jon. This allowed the kids to spend some time with the family and also Isa had to get clearance from her pediatrician for the surgery. Basically it was a physical to confirm that her heart and lungs were healthy for anesthesia. The appointment went smoothly.
Isa was very happy to be home as she had been home sick and missing her grandparents, her aunt, and uncles. Although Isa said she was ready and even excited at times about the surgery she too was nervous. She was almost five years old and understood the reason for doing the surgery as she did not like having double vision.
The night before surgery my husband drove in and we all went to Chilli's, Isa's favorite restaurant at the time (her current favorite is IHOP) to take her mind off of it. We also beforehand took her to Build-a-Bear so that she could make a stuffed buddy to take to surgery with her. We were told that we could bring a favorite cup for her to drink from and a stuffed animal to join her during surgery also that she could not eat anything past midnight.
After some nervousness that nigh, Isa finally feel asleep. It is amazing how a small child can take so much in!!! As for Jon and myself that was another thing, I don't think either one of us slept very much. Finally the morning had arrived and our caravan (everyone wanted to be there to support Isa, Jon, and I) started making our way to the surgical center.
We checked in and then headed over to the children's waiting room filled with toys, books, and decorated with beautiful quilts. We debated whether or not to bring Max with us but Isa insisted she wanted him there along with everyone else that is close to her. We waited maybe half an hour before we were called and all of a sudden Isa's nerves kicked in big time. She started crying and yes even some yelling that she didn't want to have surgery.
The initial nurse we got wasn't very friendly or understanding of Isa's feelings. She very rudely insisted that Isa calm down and get dressed into the hospital gown. As you can imagine all of Isa's emotions made Jon and I even more uneasy and having to forcefully put on the gown was a toughie. Luckily another nurse came in and took over, she offered Isa a coloring book about surgery and a bunch of those stickers that you get when you go to the doctor's office, all princess ones which calmed Isa right down.
Once Isa was calm, it made everything much easier for us. We waited a few minutes and then Dr. S came in to say hi and let us know the anaesthesiologist would be coming over to talk with us. He followed shortly and explained to us that they were going to take her to the O.R. and there they would be giving her a fruit flavored or fruit smelling gas mask to make her fall asleep. At that time they would do the IV, blood work, and of course the general anesthesia. Isa heard everything of course and got a little nervous again. A few minutes later and they were back to take our precious baby. I did my best not to cry in front of Isa, but it was extremely hard to do. I was extremely scared of the anesthesia. Some how Jon and I kept it together and they explained to Isa that she was going to the O.R. and that her stuffed dog, Brownie would be going with her to take care of her. She started fearfully crying because she didn't quite understand. Jon and I walked away with our hearts in our hands.
We waited in the waiting room for what seemed forever but in reality took probably about an hour and a half. Jon and I decided that we wanted to wait in the general waiting room until we were able to pull ourselves together again before we faced Max and the rest of our family in the children's waiting room.
Finally, Dr. S came out to tell us that Isa's surgery was done and everything looked good. He also mentioned that Isa was a feisty little girl because she was punching and yelling at the nurses in the recovery area (a possible reaction from the anesthesia since she was confused). It was then that we heard Isa screaming and admittedly I felt very relieved to hear that my baby was OK. We waited about 5 minutes before they allowed Jon and I into the recovery area.
In the recovery area we found our sweet baby girl curled up in a ball sniffling with her eyes closed and shiny as if she had Vaseline on them. She was comforted by the sound of our voice but was still very disoriented. The nurse informed us that Isa needed to drink water before leaving the surgical center and that her IV still needed to taken out. I wish that they had been able to take it out while she was still asleep so that she wouldn't have to undergo that, but I guess that is just asking for too much!
Fortunately Isa had a spectacular recovery room nurse that was very patient and kind. It was kind of difficult to provide comfort to her since she was on the hospital bed still with her IV in and couldn't really be moved. The nurse patiently helped Isa calm down while she removed the IV in her hand. Within about forty minutes or so after we finally convinced her to take a drink she was discharged.
She kept her eyes closed on the way out to the car and we already had the car ready with black out towels in the back for her. It was about half an hour drive back home and within 15 minutes or so she felt nauseous and threw up very slightly. After that she fell back asleep and when we brought her into the house she woke up and felt very panicked because she couldn't see very well, she was experiencing blurry vision from surgery. She kept screaming, "I can't see, I can't see, it hurts!" It was heart breaking to hear her say that but we knew that things were going to get better because of the surgery. It was frightening to her because although we had already explained it to her, what can be expected from a four year old child? It was the first time she opened her eyes and just felt very scared and some slight pain. After a while of calming her down she took a VERY long nap, something she RARELY does even for half an hour!
Upon waking up it was like nothing had ever happened!!! The only signs of surgery were her bloodshot eyes but no symptoms that she could physically feel. We also made sure to cover the mirrors that were at her eye level because she normally panics at the slight sight of blood and we didn't want her to see her bloody eyes and panic. I do have to mention that in some of my research and the doctors post surgery what to expect paper, we expected her eyes would be far worse. However, her eyes were only moderatley boodshot and mostly just on the outer sides of her eyes.
We were so relieved that she seemed absolutely fine, she required no Tylenol or pain medication whatsoever. The only thing that we realized was when she turned her eyes all way to her sides it did feel as if she was pulling her eyes and it was uncomfortable not necessarily painful. This was a side effect that the doctor had explained but he said it posed no danger for her to do it. We had prefilled a prescription for an eye ointment that had to be given to her once in both eyes in the morning and once in the eveining. We initially thought it was going to be a nightmare to have to do this for a few weeks but surprisingly after a few days it wasn't bad since it posed no pain to her and was an ointment as opposed to a liquid eye drop.
The next day we had an appointment with Dr. S to check to see how things were. Isa was just fine that morning and again the only sign of any surgery was the bloodshot eyes and a bit of light sensitivity while outside. Dr. S gave us wonderful news that as of that moment everything seemed succesful and we could safely travel back out to our temporary home the very next day!
I decided to write this part as honest as possible including all the emotions that we experienced so that you may have an idea of what we went through, but keep in mind your experience may be completely different.
We scheduled a day in early October for surgery and started prepping not only Isa for it but also ourselves, Jon and I. Jon made arrangements so that he could take a few days off in order to travel back home for the surgery. Isa, Max, and I traveled a few days earlier than Jon. This allowed the kids to spend some time with the family and also Isa had to get clearance from her pediatrician for the surgery. Basically it was a physical to confirm that her heart and lungs were healthy for anesthesia. The appointment went smoothly.
Isa was very happy to be home as she had been home sick and missing her grandparents, her aunt, and uncles. Although Isa said she was ready and even excited at times about the surgery she too was nervous. She was almost five years old and understood the reason for doing the surgery as she did not like having double vision.
The night before surgery my husband drove in and we all went to Chilli's, Isa's favorite restaurant at the time (her current favorite is IHOP) to take her mind off of it. We also beforehand took her to Build-a-Bear so that she could make a stuffed buddy to take to surgery with her. We were told that we could bring a favorite cup for her to drink from and a stuffed animal to join her during surgery also that she could not eat anything past midnight.
After some nervousness that nigh, Isa finally feel asleep. It is amazing how a small child can take so much in!!! As for Jon and myself that was another thing, I don't think either one of us slept very much. Finally the morning had arrived and our caravan (everyone wanted to be there to support Isa, Jon, and I) started making our way to the surgical center.
We checked in and then headed over to the children's waiting room filled with toys, books, and decorated with beautiful quilts. We debated whether or not to bring Max with us but Isa insisted she wanted him there along with everyone else that is close to her. We waited maybe half an hour before we were called and all of a sudden Isa's nerves kicked in big time. She started crying and yes even some yelling that she didn't want to have surgery.
The initial nurse we got wasn't very friendly or understanding of Isa's feelings. She very rudely insisted that Isa calm down and get dressed into the hospital gown. As you can imagine all of Isa's emotions made Jon and I even more uneasy and having to forcefully put on the gown was a toughie. Luckily another nurse came in and took over, she offered Isa a coloring book about surgery and a bunch of those stickers that you get when you go to the doctor's office, all princess ones which calmed Isa right down.
Once Isa was calm, it made everything much easier for us. We waited a few minutes and then Dr. S came in to say hi and let us know the anaesthesiologist would be coming over to talk with us. He followed shortly and explained to us that they were going to take her to the O.R. and there they would be giving her a fruit flavored or fruit smelling gas mask to make her fall asleep. At that time they would do the IV, blood work, and of course the general anesthesia. Isa heard everything of course and got a little nervous again. A few minutes later and they were back to take our precious baby. I did my best not to cry in front of Isa, but it was extremely hard to do. I was extremely scared of the anesthesia. Some how Jon and I kept it together and they explained to Isa that she was going to the O.R. and that her stuffed dog, Brownie would be going with her to take care of her. She started fearfully crying because she didn't quite understand. Jon and I walked away with our hearts in our hands.
We waited in the waiting room for what seemed forever but in reality took probably about an hour and a half. Jon and I decided that we wanted to wait in the general waiting room until we were able to pull ourselves together again before we faced Max and the rest of our family in the children's waiting room.
Finally, Dr. S came out to tell us that Isa's surgery was done and everything looked good. He also mentioned that Isa was a feisty little girl because she was punching and yelling at the nurses in the recovery area (a possible reaction from the anesthesia since she was confused). It was then that we heard Isa screaming and admittedly I felt very relieved to hear that my baby was OK. We waited about 5 minutes before they allowed Jon and I into the recovery area.
In the recovery area we found our sweet baby girl curled up in a ball sniffling with her eyes closed and shiny as if she had Vaseline on them. She was comforted by the sound of our voice but was still very disoriented. The nurse informed us that Isa needed to drink water before leaving the surgical center and that her IV still needed to taken out. I wish that they had been able to take it out while she was still asleep so that she wouldn't have to undergo that, but I guess that is just asking for too much!
Fortunately Isa had a spectacular recovery room nurse that was very patient and kind. It was kind of difficult to provide comfort to her since she was on the hospital bed still with her IV in and couldn't really be moved. The nurse patiently helped Isa calm down while she removed the IV in her hand. Within about forty minutes or so after we finally convinced her to take a drink she was discharged.
She kept her eyes closed on the way out to the car and we already had the car ready with black out towels in the back for her. It was about half an hour drive back home and within 15 minutes or so she felt nauseous and threw up very slightly. After that she fell back asleep and when we brought her into the house she woke up and felt very panicked because she couldn't see very well, she was experiencing blurry vision from surgery. She kept screaming, "I can't see, I can't see, it hurts!" It was heart breaking to hear her say that but we knew that things were going to get better because of the surgery. It was frightening to her because although we had already explained it to her, what can be expected from a four year old child? It was the first time she opened her eyes and just felt very scared and some slight pain. After a while of calming her down she took a VERY long nap, something she RARELY does even for half an hour!
Upon waking up it was like nothing had ever happened!!! The only signs of surgery were her bloodshot eyes but no symptoms that she could physically feel. We also made sure to cover the mirrors that were at her eye level because she normally panics at the slight sight of blood and we didn't want her to see her bloody eyes and panic. I do have to mention that in some of my research and the doctors post surgery what to expect paper, we expected her eyes would be far worse. However, her eyes were only moderatley boodshot and mostly just on the outer sides of her eyes.
We were so relieved that she seemed absolutely fine, she required no Tylenol or pain medication whatsoever. The only thing that we realized was when she turned her eyes all way to her sides it did feel as if she was pulling her eyes and it was uncomfortable not necessarily painful. This was a side effect that the doctor had explained but he said it posed no danger for her to do it. We had prefilled a prescription for an eye ointment that had to be given to her once in both eyes in the morning and once in the eveining. We initially thought it was going to be a nightmare to have to do this for a few weeks but surprisingly after a few days it wasn't bad since it posed no pain to her and was an ointment as opposed to a liquid eye drop.
The next day we had an appointment with Dr. S to check to see how things were. Isa was just fine that morning and again the only sign of any surgery was the bloodshot eyes and a bit of light sensitivity while outside. Dr. S gave us wonderful news that as of that moment everything seemed succesful and we could safely travel back out to our temporary home the very next day!
Two Years Into Exotropia Therapy...
Please keep in mind that I am not a doctor and have no medical background. I am
just writing based on my experiences and occasionally I may get things
wrong.
Isa spent two years wearing patches from at first half hour a day to an hour and a half a day. This was easy most days but every once in a while Isa would question why she had to, but in the end she would always do it. She was a real trooper about it. Some days I have to admit that we forgot to patch and yes I did feel guilty about it but I always tried my best. We did make sure to patch during sitting times, like watching tv, reading a story or coloring, never during active playing. We found out very early on that during her patching her depth perception wasn't very good and therefore causing a few falls.
I knew from my research that double vision was a very bad sign for Isa's condition and so when my sweet husband Jon mentioned Isa had, had it during a conversation, I freaked! I explained to him as best as I understood it, that once a person starts having double vision eventually the brain tells the eye to ignore vision from one eye in order to avoid confusion. With time the eye will lose vision in that the brain no longer recognizes the vision from that eye.
Immediately the next day (since the Dr. S's office was already closed) I called to find out what needed to be done. Dr. S's assistant said that since Isa had an upcoming appointment within two weeks we didn't need to make one earlier. Those two weeks were grueling!!! I didn't know what to expect. Besides the fact that she was experiencing the occasional double vision she also seemed to experience the drifting of at least one of her eye's for a minimum of once a day, usually when she was very tired.
Two weeks came after what seemed forever and again I had to make the trip by myself which made it all the more nerve wrecking. There I sat very nervous with Isa upset about having to get dilated and Max wanting to touch everything in the exam room. Dr. S took a few minutes to do all the examinations and there it was, SURGERY!!! Ahh, I knew it was coming but nonetheless it was hard to hear! I wanted to break down crying and although Dr. S said it was an easy outpatient surgery I couldn't help but worry. I also felt that although I was hearing that the surgery was going to be easy it was MY BABY that was having it and having to go under general anesthesia and no easy surgery was truly going to be easy to deal with.
We drove back to where we were living later that week and I couldn't help but feel a cloud over me. A cloud of mixed emotions, ranging from anger to sadness. I felt sad that Isa had exotropia to begin with but also sad that she now required surgery. I also felt anger at myself, was it something I did or didn't do? I know that it may sound silly all the emotions I went through for something that may seem fairly simple to some people, but that is how I felt, overall just scared. Luckily the feeling of blame and anger didn't last long and I was able to accept it. I felt thankful that that is the only thing Isa was dealing with.
Isa spent two years wearing patches from at first half hour a day to an hour and a half a day. This was easy most days but every once in a while Isa would question why she had to, but in the end she would always do it. She was a real trooper about it. Some days I have to admit that we forgot to patch and yes I did feel guilty about it but I always tried my best. We did make sure to patch during sitting times, like watching tv, reading a story or coloring, never during active playing. We found out very early on that during her patching her depth perception wasn't very good and therefore causing a few falls.
I knew from my research that double vision was a very bad sign for Isa's condition and so when my sweet husband Jon mentioned Isa had, had it during a conversation, I freaked! I explained to him as best as I understood it, that once a person starts having double vision eventually the brain tells the eye to ignore vision from one eye in order to avoid confusion. With time the eye will lose vision in that the brain no longer recognizes the vision from that eye.
Immediately the next day (since the Dr. S's office was already closed) I called to find out what needed to be done. Dr. S's assistant said that since Isa had an upcoming appointment within two weeks we didn't need to make one earlier. Those two weeks were grueling!!! I didn't know what to expect. Besides the fact that she was experiencing the occasional double vision she also seemed to experience the drifting of at least one of her eye's for a minimum of once a day, usually when she was very tired.
Two weeks came after what seemed forever and again I had to make the trip by myself which made it all the more nerve wrecking. There I sat very nervous with Isa upset about having to get dilated and Max wanting to touch everything in the exam room. Dr. S took a few minutes to do all the examinations and there it was, SURGERY!!! Ahh, I knew it was coming but nonetheless it was hard to hear! I wanted to break down crying and although Dr. S said it was an easy outpatient surgery I couldn't help but worry. I also felt that although I was hearing that the surgery was going to be easy it was MY BABY that was having it and having to go under general anesthesia and no easy surgery was truly going to be easy to deal with.
We drove back to where we were living later that week and I couldn't help but feel a cloud over me. A cloud of mixed emotions, ranging from anger to sadness. I felt sad that Isa had exotropia to begin with but also sad that she now required surgery. I also felt anger at myself, was it something I did or didn't do? I know that it may sound silly all the emotions I went through for something that may seem fairly simple to some people, but that is how I felt, overall just scared. Luckily the feeling of blame and anger didn't last long and I was able to accept it. I felt thankful that that is the only thing Isa was dealing with.
Subscribe to:
Posts (Atom)