I was just thinking...
We had a good year. Elyse didn't get sick. Didn't require any hospitalizations. No longer requires nursing. No more monitors or scary oxygen tanks at home. She started Preschool and doing excellent. NO LONGER has a feeding tube (yay!!!)
Best of all... her MRI and CT have been stable and won't require any until she turns 5 years old!!!!!
2009 has been good. Now I’m a little teary when I think back to 2006-2007. That was such a difficult and scary time for all of us and yet looking at her now… I can’t even describe it. :) so i'll just stop there before I start crying.
Take care everyone...
Have a safe and happy New Years!
VISITS
Thursday, December 31, 2009
Wednesday, December 16, 2009
Monday, December 14, 2009
Superstar
We started the eye treatment. Her right pupil (good eye) is now dilated. I was able to put the ointment in her eye while she slept by putting it on my finger and rubbing it into the corner of her eye. I had to do it quick before she woke up. Saturday morning her pupil was enlarged. I had forgotten and we had a early appt. And it was very bright outside. so now I have to remind myself to buy and carry extra sunglasses for her. Her poor eyes were having such a hard time. She didn't complain, but she couldn't keep the left eye open and the right eye was tearing.
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Thursday, December 10, 2009
Tuesday, December 8, 2009
too cold for elyse?
Coming home from the babysitters wasn't fun (its a 6-7 min walk - at elyse's speed). it's snowing outside and elyse doesn't like it. notice the pictures... her arms. she's afraid to walk by herself. I'm pretty sure, this would of been something her early intervention Occupational Therapist would have loved to work on. The entire way home she kept saying... "no snow mommy... i don't want it". =( sad isn't it. most kid get excited, but not her. this is her first year really being out there.
OK but then once we arrived home, after taking off her coat i see her face and saw how purple her skin around her mouth was. scary! these pictures were taken a little after, so she's not as purple as she was when we got home. but i think you can still see. i'm thinking that she's going to have to wear her snow suit tomorrow. Right now, I don't think it's very cold. it's in the 20-30. Can you imagine how she's going to look & feel when the temp starts to really get low... in the 10's and below!!!!
There is no explanation as to why she gets like this. Cardiology said it's not related to her heart. Everyone else said they don't know. Couple of our PHACE kids have the exact same problem.
OK but then once we arrived home, after taking off her coat i see her face and saw how purple her skin around her mouth was. scary! these pictures were taken a little after, so she's not as purple as she was when we got home. but i think you can still see. i'm thinking that she's going to have to wear her snow suit tomorrow. Right now, I don't think it's very cold. it's in the 20-30. Can you imagine how she's going to look & feel when the temp starts to really get low... in the 10's and below!!!!
There is no explanation as to why she gets like this. Cardiology said it's not related to her heart. Everyone else said they don't know. Couple of our PHACE kids have the exact same problem.
New Ophthalmologist!
Elyse had another Ophthalmology appointment. We were going to take her to someone in Milwaukee, but that person recommended we stay closer to home and she recommended a few around our area. We chose someone from her list in Arlington Heights, IL (much closer than Milwaukee). When I mention the name to our pediatrician, she immediately recognized it. Her niece sees her. She explained how her sister loves this Ophthalmologist and how great she was. With that said, we went ahead and tried scheduling. Of course, this Ophthalmologist was booked until March. Luckily for us, the Ophthalmologist in Milwaukee contacted Dr. C (our new Ophthalmologist in Arlington Heights) and she immediately emailed and had me talk to her assistant to get us in sooner. =)
The appointment was long, but worth it. First of all, Elyse did amazing well. Almost no tears! She resisted a little, but Dr. C knew how to get her attention and Elyse cooperated…. Except for the part when they have you look into that machine that measure the eye shape or takes a picture… can’t remember what it’s called. That one Elyse wouldn’t sit still.
Dr. C had a chance to read most of Elyse’s medical stuff from the hospital that was related to her eyes. She explained everything to me.. what she did and what she saw. Something our last Ophthalmologist failed to do without us asking him questions.
She saw everything we have been noticing. The weak left eye, the droopy eye lid and the blinking/squinting.
She agreed with the last ophthalmologist. -
Elyse does have astigmatism in both eyes, but it’s equal. Meaning that she doesn’t need glasses. Glasses are only needed when one eye is worse than the other.
She saw the white ring around the left eye optic nerve. She explained it to me, of course I can’t explain it back. =) but overall, it isn’t bad. It was something that she could have been born with.
Elyse wandering, turning left eye. She explained how the eye also jump up and down too. Something we hadn’t noticed. We only saw it move to the sides. She said it wasn’t very bad. With the treatment, she felt it can be corrected in less than 12 weeks.
Before I even asked about the patching, she started explained how the old treatment was patching. How it required us to patch her good eye every day for 4 hrs, but how the child fought it, especially starting it at Elyse’s age. She mention a new treatment that was recently studied that is supposed to be better than patching. Instead of eye patching, we will using atropine ointment once a week, to dilate her right pupil. This will force her to use her left eye. Dr C also gave me a child’s home vision test (sheet of paper with images in different sizes) to use as therapy because the vision in her left eye is 20/80. She recommends using this as much as possible. She also encourages us to have Elyse or us cover her right eye… hoping it’ll make our clinics visits a little easy, so she doesn’t freak out when we try to cover her eye.
I was very pleased with Dr. C. She seems very friendly and wants to help. I saw how much her patients like her and respect her. Now I don’t have to worry so much about Elyse’s eyes. This Friday we will be starting the ointment. We follow up in 6 weeks.
The appointment was long, but worth it. First of all, Elyse did amazing well. Almost no tears! She resisted a little, but Dr. C knew how to get her attention and Elyse cooperated…. Except for the part when they have you look into that machine that measure the eye shape or takes a picture… can’t remember what it’s called. That one Elyse wouldn’t sit still.
Dr. C had a chance to read most of Elyse’s medical stuff from the hospital that was related to her eyes. She explained everything to me.. what she did and what she saw. Something our last Ophthalmologist failed to do without us asking him questions.
She saw everything we have been noticing. The weak left eye, the droopy eye lid and the blinking/squinting.
She agreed with the last ophthalmologist. -
Elyse does have astigmatism in both eyes, but it’s equal. Meaning that she doesn’t need glasses. Glasses are only needed when one eye is worse than the other.
She saw the white ring around the left eye optic nerve. She explained it to me, of course I can’t explain it back. =) but overall, it isn’t bad. It was something that she could have been born with.
Elyse wandering, turning left eye. She explained how the eye also jump up and down too. Something we hadn’t noticed. We only saw it move to the sides. She said it wasn’t very bad. With the treatment, she felt it can be corrected in less than 12 weeks.
Before I even asked about the patching, she started explained how the old treatment was patching. How it required us to patch her good eye every day for 4 hrs, but how the child fought it, especially starting it at Elyse’s age. She mention a new treatment that was recently studied that is supposed to be better than patching. Instead of eye patching, we will using atropine ointment once a week, to dilate her right pupil. This will force her to use her left eye. Dr C also gave me a child’s home vision test (sheet of paper with images in different sizes) to use as therapy because the vision in her left eye is 20/80. She recommends using this as much as possible. She also encourages us to have Elyse or us cover her right eye… hoping it’ll make our clinics visits a little easy, so she doesn’t freak out when we try to cover her eye.
I was very pleased with Dr. C. She seems very friendly and wants to help. I saw how much her patients like her and respect her. Now I don’t have to worry so much about Elyse’s eyes. This Friday we will be starting the ointment. We follow up in 6 weeks.
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