M has now had 3 custom contacts ordered. The first wasn't right at all, the second was close, and the third seemed to be the closest. The second and third custom contacts both had wrinkles in the outer edge of the contact, and the centration (middle focusing part) seemed to sit low on her pupil.
I kept M wearing the third custom the most, even though it would fall out now and then. I thought this one fit on her eye the best and thought she might be able to focus and see with this one the best. Although, I pushed our luck, and this one fell out of her eye and we lost it.
After losing this third custom lens, I went back to the second custom again. This time it seemed to fit better and sat higher on her pupil. Although after having not worn it for a week, this contact which had NEVER fallen out of M's eye, fell out 4 times in 5 days. I had been using tear drops throughout the day, but it didn't really seem to matter. So far we have been able to see it falling out, or notice when it falls out right away.
M saw her optometrist and he examined this contact in her eye again. He has ordered a slightly larger diameter for the contact, and increased the magnification of the lens slightly. He's hoping this one might fit better at this point.
Finding a fit for the contact seems to be somewhat trial and error. We have had 3 custom contacts and each one ordered seems to get closer to fitting better than the one before. One of the major criteria for success with these contacts is that they don't fall out of her eye, and then adjustments get made to try to get the correct magnification and proper position on her pupil.
Here's the hoping the 4th custom is a keeper!
Saturday, 2 February 2013
Thursday, 31 January 2013
Surgery Day Part 1 - Congenital Cataract
We had found out 5 days before her surgery was scheduled that M had a congenital cataract in her right eye and that we had 2 choices: operate to remove the cataract and work to restore vision, or do not do surgery and monitor the vision in her right eye. We knew going to that appointment that it was most likely a cataract and we knew that we would want the surgery done in hopes of having some vision for M in that eye. We were given the best case scenario for M's vision in that eye at this appointment and it was significantly lower than we thought. She had a dense, large, and centred cataract that was not caught early in her life, making vision recovery not as promising had it been identified and treated earlier.
Pre-surgery time sucked. I cried all day, almost everyday, and it was negatively affecting my 3 year old son. After 2 days of crying all day, I promised I would quit crying in front of my son E; those days I just cried in the shower, when he was napping, and after he went to bed.
Pre-surgery time sucked. I cried all day, almost everyday, and it was negatively affecting my 3 year old son. After 2 days of crying all day, I promised I would quit crying in front of my son E; those days I just cried in the shower, when he was napping, and after he went to bed.
This is a pre-surgery picture of M sitting in our kitchen about 6 am getting ready to head to the hospital. She had the surgery on November 23, 2012 just before she turned 9 months old.
M had the 10:30am surgery which meant we had to be at the hospital at 8:30am. We checked in and eventually saw a nurse to gather details about her history, her likes and dislikes, and information like whether she was breast or bottle fed. We provided the nurses with her suther and a little blankie that she always sleeps with, hoping that she would find comfort when the time came from these familiar objects in such an unfamiliar place.
We were able to be with M just until surgery. The surgeon, nurse, and anesthesiologist came to talk to us in a little room. They asked us a few more questions and told us that they would be taking her to put her under and start surgery. I had to hand her over to the nurse and watch the nurse take her out of the room. Neither parent was allowed to be with her when they put her under because she was less than 1 year old.
We were able to be with M just until surgery. The surgeon, nurse, and anesthesiologist came to talk to us in a little room. They asked us a few more questions and told us that they would be taking her to put her under and start surgery. I had to hand her over to the nurse and watch the nurse take her out of the room. Neither parent was allowed to be with her when they put her under because she was less than 1 year old.
She was operated on until around 12:15pm. The surgeon came to get my husband and I in the waiting room. He said everything went well, and only 1 of us was allowed to see her in the recovery room. I went in to find her being held by the anesthesiologist. They passed her to me as soon as I got there.
Tuesday, 29 January 2013
Arm Immobilizers Arrive!
The arm immobilizers arrived in the mail today! Took 10 days from order to get to my door from the US.
I ended up buying a pair from www.snugglewraps.com. There are a few options out there. I primarily chose these ones because they looked less 'medical'. One of the comments on their website was about how people were less likely to ask you how your child broke both their arms when you wore these immobilizers compared to some other brands out there. I agreed with this comment, just by looking at the options online, and figured I've been answering enough peoples' questions just by having M wear a patch, I didn't want to have to add explaining that her arms weren't actually broken. Apparently these will be able to fit under a shirt, but can also be worn over some clothes as well.
They just arrived so we haven't tried them on M yet. She has been remarkably good for the past 10 days since I actually broke down and put in the order for these things. I think she must have overheard our conversations and realized she'd better start behaving or she'd be sporting these lovely doggie arm immobilizers!
What I Know About Patching So Far...
1. It sucks!!
2. Patching means that you are putting a patch over a child's 'good eye' to force the 'bad eye' to work. Patching is to encourage the eye/brain connection that has already been 'switched off' to 'switch back on again'.
3. Patching started after M's cataract removal surgery when she was wearing her contact. She was required to wear her patch for all waking hours of the day except the hour before bed. She is still required to do this amount of patching each day.
4. The first 2 days of patching M couldn't see a thing out of her eye that wasn't patched. She sat on the floor and cried, or was held in my arms and cried. She cried all day for 2 days because she couldn't see. It was horrible.
5. Eventually she learned that she could rip her patch off. Once she learned she could rip it off, she made a habit out of it.
6. Every time M rips her patch off she rips her skin off.
7. Applying Calamine lotion to the skin that is going to come into contact with the patch adhesive works pretty well.
8. Applying Cavilon to the skin where the patch adhesive comes into contact with her skin helps too.
9. I think that the patching is working to develop the sight in her eye that had the cataract. A few days into patching she ran into the couch while crawling. Now she can maneouvre around our house avoiding most obstacles, and can even find smaller objects on the floor. She can also find her way around new places.
2. Patching means that you are putting a patch over a child's 'good eye' to force the 'bad eye' to work. Patching is to encourage the eye/brain connection that has already been 'switched off' to 'switch back on again'.
3. Patching started after M's cataract removal surgery when she was wearing her contact. She was required to wear her patch for all waking hours of the day except the hour before bed. She is still required to do this amount of patching each day.
4. The first 2 days of patching M couldn't see a thing out of her eye that wasn't patched. She sat on the floor and cried, or was held in my arms and cried. She cried all day for 2 days because she couldn't see. It was horrible.
5. Eventually she learned that she could rip her patch off. Once she learned she could rip it off, she made a habit out of it.
6. Every time M rips her patch off she rips her skin off.
7. Applying Calamine lotion to the skin that is going to come into contact with the patch adhesive works pretty well.
8. Applying Cavilon to the skin where the patch adhesive comes into contact with her skin helps too.
9. I think that the patching is working to develop the sight in her eye that had the cataract. A few days into patching she ran into the couch while crawling. Now she can maneouvre around our house avoiding most obstacles, and can even find smaller objects on the floor. She can also find her way around new places.
Sunday, 27 January 2013
Lost - One Custom Contact
Today we lost a custom contact somewhere in our house. It fell out of M's eye. Everyone in our house searched on their hands and knees around most of the house looking for a small clear contact - or a shriveled up piece of plastic. We found lots of other things, but no contact. $175 added to my floor grime...
But the good news is M came and told us by crying and wanting up when we think it fell out! So she notices a difference between having it in when she's patched, and not having it in when she's patched! And this is the first custom we've lost so far (trying to add to the positive side)...
But the good news is M came and told us by crying and wanting up when we think it fell out! So she notices a difference between having it in when she's patched, and not having it in when she's patched! And this is the first custom we've lost so far (trying to add to the positive side)...
Friday, 25 January 2013
Red Eye Reflex - Congenital Cataract
Another sign of cataracts is the absence of a red eye reflex. It is exactly as it sounds. When you take a picture of your child with a camera that allows red eye to show up, both eyes should have red eye. If an eye lacks the red eye look in pictures, or if the red eye looks different between the eyes, then there could be an abnormality.
Red eye reflex should be screened for by a family physician at regular visits during a child's early months of life. The earlier an identification of an abnormality in a child's eye the more promising the visual outcome will be.
The picture below shows M the morning of her cataract removal surgery. M's left eye shows the red pupil, whereas her right eye shows no red in it. Her left eye exhibits this red eye response, which is what is supposed to happen when there is no cataract there. Her right eye does not show any red because it has the cataract in it.
All infants are supposed to be screened for a red eye reflex within the first 2 months of life, and thereafter. It's supposed to be performed by someone who is trained to do that (could be a family physician, pediatrician) and is supposed to be in a darkened room. Just ask your physician if they are looking for it - at least then they'll know that they should if they haven't or be able to tell you what they are looking for if they are doing it.
The American Academy of Pediatrics has an article online: Red Reflex Examination in Infants.
http://pediatrics.aappublications.org/content/109/5/980.full
It gives a brief outline on what should be done by physicians when examining infants for the red eye reflex.
Red eye reflex should be screened for by a family physician at regular visits during a child's early months of life. The earlier an identification of an abnormality in a child's eye the more promising the visual outcome will be.
The picture below shows M the morning of her cataract removal surgery. M's left eye shows the red pupil, whereas her right eye shows no red in it. Her left eye exhibits this red eye response, which is what is supposed to happen when there is no cataract there. Her right eye does not show any red because it has the cataract in it.
M's left eye is clearly showing a red eye reflex, by appearing red in this photo. There is no red in her right eye because it has the cataract.
The American Academy of Pediatrics has an article online: Red Reflex Examination in Infants.
http://pediatrics.aappublications.org/content/109/5/980.full
It gives a brief outline on what should be done by physicians when examining infants for the red eye reflex.
Thursday, 24 January 2013
The First Few Contacts
The first contact we got for M was a disposable one. Her optometrist gave us 2 for free at our first appointment. I was prepared to start paying for them right away, but was told to take the 'freebies' while we had the opportunity.
The first 2 disposables we got were easy to get in her eye, however, fell out of her eye regularly. The first time it fell out I had her at the pool and it fell onto the pool deck. Thinking that this was a rarity I just threw it in the garbage! Little did I know I would kill to have that contact back no matter where it fell - throwing it in the garbage wasn't such a smart idea...
The second disposable we got at that first appointment also kept falling out of her eye. It was almost as if they flew out. She wasn't rubbing her eyes, and her eyes didn't seem too dry. I would leave her somewhere in the house for a few minutes, and would realize she had lost the thing. I spent so much time looking in and examining her eye, trying to figure out if the contact was still in there. Also spent a lot of time tearing through the house to try and find any shriveled up contact remains.
As it became apparent that the disposables weren't going to stay in her eye, the optometrist decided to order a custom lens. These lens were not to be thrown out! They cost $175 each. The first one we got was too small for her eye. It was harder to get in her eye because the actual contact diameter was smaller, and the contact was stiffer when bending it to get in her eye. It went in fine but kept floating to the outside corner of her eye and getting stuck there. I had to manually move it back over her pupil and iris repeatedly and constantly use moisturizing drops. This contact wasn't working. We were told to stop using it and go back to the disposables until the next custom contact arrived.
The second custom that arrived didn't cost us anything. We just had to return the first custom we had, and exchange it for the new custom. There seems to be a return and exchange program. So as long as we don't lose the 1 custom contact we paid for, we won't have to pay for the next as we are fitting them. The second one worked pretty well. It generally stayed where it should, and never fell out! It was a huge feeling of relief not to have to be constantly worried about it! However, the outer part of the contact appeared to have a wrinkle in it when M would wear it, and the centration (magnified circle in the middle) was sitting lower on her pupil. The optometrist looked at it in her eye, and ordered another custom lens that was slightly different than this one.
This 3rd custom contact that we received still has the same wrinkle around the outer edge of the contact, and the centration is still lower on her pupil than it should be. We've been wearing this one the majority of the time now. It has fallen out twice so far, but generally you can see when it is going to happen and prepare! The wrinkle seems smaller, and the centration seems to be a bit higher on her pupil, but still has it's problems.
We are still working to find something that doesn't wrinkle, sits higher over her pupil, and doesn't fall out. Meeting those 3 criteria seems to be more difficult than one would think.
The first 2 disposables we got were easy to get in her eye, however, fell out of her eye regularly. The first time it fell out I had her at the pool and it fell onto the pool deck. Thinking that this was a rarity I just threw it in the garbage! Little did I know I would kill to have that contact back no matter where it fell - throwing it in the garbage wasn't such a smart idea...
The second disposable we got at that first appointment also kept falling out of her eye. It was almost as if they flew out. She wasn't rubbing her eyes, and her eyes didn't seem too dry. I would leave her somewhere in the house for a few minutes, and would realize she had lost the thing. I spent so much time looking in and examining her eye, trying to figure out if the contact was still in there. Also spent a lot of time tearing through the house to try and find any shriveled up contact remains.
As it became apparent that the disposables weren't going to stay in her eye, the optometrist decided to order a custom lens. These lens were not to be thrown out! They cost $175 each. The first one we got was too small for her eye. It was harder to get in her eye because the actual contact diameter was smaller, and the contact was stiffer when bending it to get in her eye. It went in fine but kept floating to the outside corner of her eye and getting stuck there. I had to manually move it back over her pupil and iris repeatedly and constantly use moisturizing drops. This contact wasn't working. We were told to stop using it and go back to the disposables until the next custom contact arrived.
Custom contact bottles
The second custom that arrived didn't cost us anything. We just had to return the first custom we had, and exchange it for the new custom. There seems to be a return and exchange program. So as long as we don't lose the 1 custom contact we paid for, we won't have to pay for the next as we are fitting them. The second one worked pretty well. It generally stayed where it should, and never fell out! It was a huge feeling of relief not to have to be constantly worried about it! However, the outer part of the contact appeared to have a wrinkle in it when M would wear it, and the centration (magnified circle in the middle) was sitting lower on her pupil. The optometrist looked at it in her eye, and ordered another custom lens that was slightly different than this one.
This 3rd custom contact that we received still has the same wrinkle around the outer edge of the contact, and the centration is still lower on her pupil than it should be. We've been wearing this one the majority of the time now. It has fallen out twice so far, but generally you can see when it is going to happen and prepare! The wrinkle seems smaller, and the centration seems to be a bit higher on her pupil, but still has it's problems.
We are still working to find something that doesn't wrinkle, sits higher over her pupil, and doesn't fall out. Meeting those 3 criteria seems to be more difficult than one would think.
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