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.
Friday, November 27, 2009
Wednesday, November 18, 2009
eyes
Yesterday we took Elyse for her eye check up. We were 4 months over due. The appointment didn't go well. Elyse freaked out and wouldn't let the ophthalmologist examine her eyes. He had to force her eyes open. She was not happy and neither were we.
He thinks she may have some trouble seeing through her left eye because during one of the exams, when i was asked to cover the left eye, she was able to tell us what the pictures were on the wall. Yet every time I tried the covering the right eye, she cried and wouldn't tell me what the picture was. In order to know whether her eye is lazy, he has instructed us to patch her right eye for 2 hrs. if we notice that she's having a hard time seeing, then we need to continue patching her right eye every day for 2 hrs for 4 months. If she does have lazy eye and the patching doesn't work, then he wants to do surgery to correct her eye. In the past, he said there was no concern, but we all saw how bad her eye was getting. Right now, her left eye is very sensitive to the wind and bright lights. A few weeks ago, we started noticing that she blinks alot.
We have asked her doctors in Milwaukee to refer us to an Ophthalmologist. Today was our first day with the patch and it was hard. We gave up after an hour and 45 minutes. I really couldn't tell how she was seeing. Tomorrow we will try again. =(
He thinks she may have some trouble seeing through her left eye because during one of the exams, when i was asked to cover the left eye, she was able to tell us what the pictures were on the wall. Yet every time I tried the covering the right eye, she cried and wouldn't tell me what the picture was. In order to know whether her eye is lazy, he has instructed us to patch her right eye for 2 hrs. if we notice that she's having a hard time seeing, then we need to continue patching her right eye every day for 2 hrs for 4 months. If she does have lazy eye and the patching doesn't work, then he wants to do surgery to correct her eye. In the past, he said there was no concern, but we all saw how bad her eye was getting. Right now, her left eye is very sensitive to the wind and bright lights. A few weeks ago, we started noticing that she blinks alot.
We have asked her doctors in Milwaukee to refer us to an Ophthalmologist. Today was our first day with the patch and it was hard. We gave up after an hour and 45 minutes. I really couldn't tell how she was seeing. Tomorrow we will try again. =(
Wednesday, November 11, 2009
Boo Boo's new bed
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Monday, November 2, 2009
Halloween
School
There was no party. Parents were allowed to come in for the first 20 min to take pictures. Elyse wasn't comfortable though. The teachers had a hard time getting her together with the rest of the class. She cried when she saw us leaving. =(
Trick or Treat with cousin Natalie & Ethan
This was her warm costume. She looks cute doesn't she. =) She loved asking for candy. She wasn't shy. She growled when they asked her too. She even started asking the people for water when she got thirsty.
There was no party. Parents were allowed to come in for the first 20 min to take pictures. Elyse wasn't comfortable though. The teachers had a hard time getting her together with the rest of the class. She cried when she saw us leaving. =(
Trick or Treat with cousin Natalie & Ethan
This was her warm costume. She looks cute doesn't she. =) She loved asking for candy. She wasn't shy. She growled when they asked her too. She even started asking the people for water when she got thirsty.
Friday, October 30, 2009
Alex's Blood Pressure update
yay!
Cardiologist called me this morning. He reviewed Alex's results of the Blood Pressure monitor Alex wore for 24 hrs and he said everything looks fine. We do not need to worry.
His average BP was 116/63.
The highest was 139/78
The lowest was 88/45
Normal BP one should have is 120/80 so for him to be 116/63 is very good. The monitor he wore, took his BP every 15-30 mins for 24 hrs.
Cardiologist said that I do not need to bring him in until next year.
So Alex does have White Coat Hypertension. :)
Cardiologist called me this morning. He reviewed Alex's results of the Blood Pressure monitor Alex wore for 24 hrs and he said everything looks fine. We do not need to worry.
His average BP was 116/63.
The highest was 139/78
The lowest was 88/45
Normal BP one should have is 120/80 so for him to be 116/63 is very good. The monitor he wore, took his BP every 15-30 mins for 24 hrs.
Cardiologist said that I do not need to bring him in until next year.
So Alex does have White Coat Hypertension. :)
Thursday, October 22, 2009
The H1N1 vaccines
Yesterday our pediatricians office received a small shipment of H1N1 shots. A nurse called me this morning to schedule Elyse. I was able to schedule both Alex and Elyse for tonight. Alex is the one to always get colds, he's already been sick twice since school started. Elyse is getting the shot and Alex might be get the mist, but they are going to check first if maybe he needs the shot instead. Both seasonal & H1N1 mist contains the live virus which can cause the Flu like symptoms (but not always). Both Elyse and Alex had the seasonal flu mist in September and neither had reactions.
It was a tough choice whether to vaccine or not. There is so much information going on. I'm hoping and praying that I'm making the right choice FOR them. I've read both sides, but I have to do what’s best for Elyse. Most of the children with medical issues (like Elyse) are the ones ending up in the ICU. Alex has a better chance of fighting it off.
I also got to speak to the kids cardiologist yesterday. I wanted to make sure I didn't have to bring in Alex sooner. He said he will have the office mail us a blood pressure cuff (which I believe) Alex will wear for 24 hours that will record his readings. It will take his BP several times a day. This way, he'll be more relax and get a more accurate reading. Afterwards, I'll mail the cuff to the cardiologist office and we'll have the results in a couple of weeks before his appointment in January. I feel so much better. I really didn't want to wait until January because what if it is high. Better safe than sorry.
It was a tough choice whether to vaccine or not. There is so much information going on. I'm hoping and praying that I'm making the right choice FOR them. I've read both sides, but I have to do what’s best for Elyse. Most of the children with medical issues (like Elyse) are the ones ending up in the ICU. Alex has a better chance of fighting it off.
I also got to speak to the kids cardiologist yesterday. I wanted to make sure I didn't have to bring in Alex sooner. He said he will have the office mail us a blood pressure cuff (which I believe) Alex will wear for 24 hours that will record his readings. It will take his BP several times a day. This way, he'll be more relax and get a more accurate reading. Afterwards, I'll mail the cuff to the cardiologist office and we'll have the results in a couple of weeks before his appointment in January. I feel so much better. I really didn't want to wait until January because what if it is high. Better safe than sorry.
Tuesday, October 20, 2009
Alex
Today Alex had his 13/14 year check up (he turns 14 in January). He is in the 90 (height) 95 (weight) percentile. The pediatrician said he is as tall as a 16 year old (sigh!). I did walk out of the room so he could examine him privately. When I was called back, the doctor explained to me that his BP (blood pressure) is a little elevated. It was 130/90 - (should be below 120/80).
Some of you might recall, last year I had to schedule him an appointment with Elyse's cardiologist for a EKG & echocardiogram. They blamed the ADHD medication and anxiety for the high BP. Currently he isn't on any medication except allergy shots (which i forgot to mention - Oops!). He hasn't been on the ADHD stuff since last year. The pediatrician isn't too concern though. He also thinks that Alex might be getting nervous, raising his BP based on his heart rate. He suggested we make the followup appointment with cardiology before he did any blood testing or ultrasound and let cardiology decide what the next step should be. Good thing I've already schedule both Alex & Elyse for January (sigh!), but I may end up rescheduling it soon now that we know his BP is still elevated.
Seriously, taking Elyse is nerve wrecking, having to take both will be worse. Hopefully it's just anxiety like the doctor thinks. My mother has a BP cuff, so the pediatrician suggested we taken his BP a few times a day to see how the numbers look prior to the cardiologist appointment. That way we'll know for sure if it is anxiety or something else.
Some of you might recall, last year I had to schedule him an appointment with Elyse's cardiologist for a EKG & echocardiogram. They blamed the ADHD medication and anxiety for the high BP. Currently he isn't on any medication except allergy shots (which i forgot to mention - Oops!). He hasn't been on the ADHD stuff since last year. The pediatrician isn't too concern though. He also thinks that Alex might be getting nervous, raising his BP based on his heart rate. He suggested we make the followup appointment with cardiology before he did any blood testing or ultrasound and let cardiology decide what the next step should be. Good thing I've already schedule both Alex & Elyse for January (sigh!), but I may end up rescheduling it soon now that we know his BP is still elevated.
Seriously, taking Elyse is nerve wrecking, having to take both will be worse. Hopefully it's just anxiety like the doctor thinks. My mother has a BP cuff, so the pediatrician suggested we taken his BP a few times a day to see how the numbers look prior to the cardiologist appointment. That way we'll know for sure if it is anxiety or something else.
Tuesday, October 13, 2009
MRI results
Elyse's head MRI was reviewed yesterday by her doctor, neurologist and neuroradiologist. They compared it to the MRI done 6 months ago and...
There was no change! Everything is stable. =)
There was no change! Everything is stable. =)
Friday, October 9, 2009
miscellaneous stuff
Elyse & Leanis
This is Leanis. Leanis lives across the street from us. Elyse loves to play with her. Well it's been a pain coming home from the babysitters house. If she sees Leanis, Elyse will try to run across the street. I have to take her to say Hi. They don't talk. They just smile at each other, hold hands and sing, "ring around the rosey". Then I have to carry her back home because of course, she's screaming and kicking.
Watching Yo Gabba Gabba
Finally, I've found something that will keep her calm! Not even Elmo or Dora keeps her this interested. Which I know is good, but sometimes I do need her occupied while I cook.
Baseball
Here she's playing baseball. Papi is proud.
Speech update
We are amazed at Elyse's vocabulary. She's still learning, but it's cute hearing her express herself.
Wednesday, we went to Target. She's trying to tell me something, Lalo replied and she immediately told him... "I talking to Mami"
:) You know I'm loving that one.
Family new
Elyse has a new cousin. Baby Jacob was born last week. We visited Lalo's sister on Sunday and Elyse was so happy. She got to carry baby Jacob. She was so proud. I have many pictures, but I haven't had time to edit them.
Thursday, September 24, 2009
Good Morning Boogie
She had us guessing again. She's been singing & dancing something she learned in school, so Lalo went online and figured it out (we think).
Good Morning Boogie
Hello Neighbor, what do you say?
(Children bow to each other)
It's going to be a happy day.
(Children clap hands together)
So greet your neighbor,
(Children give each other high fives)
And boogie on down.
(Children wiggle their hips)
Give 'em a bump,
(Children bump their hips together)
and turn around.
(Children turn around)
Good Morning Boogie
Hello Neighbor, what do you say?
(Children bow to each other)
It's going to be a happy day.
(Children clap hands together)
So greet your neighbor,
(Children give each other high fives)
And boogie on down.
(Children wiggle their hips)
Give 'em a bump,
(Children bump their hips together)
and turn around.
(Children turn around)
Tuesday, September 15, 2009
The bus
Second week of school and Elyse is doing great. Still no tears. Yay, my little mamas! Yesterday was her first day riding the bus to school (they bring her home too). We had some issues with them not having a car seat installed (because she is so little and it’s written up in her IEP) but that was taken care of. Today the bus had the seat installed. Very cute, she saw the bus from our window and yelled, “Mommy! The bus! The bus!” it was a couple minutes early. Yesterday it was 5-7 minutes late, so I really wasn’t expecting it. Thank God she was ready. Even sitting on the car seat, we could barely see her forehead from the bus window. Sorry no pictures. =(
In two weeks, we will be taking her to Milwaukee for another head MRI/MRA. This will be her first scan in Milwaukee. The doctors wanted a scan with their settings. I guess each hospital does it differently and in Milwaukee, they have a specific protocol for the PHACE children, which I like. She will be sedated, which will also be a first time. They will use general Anesthesia if they notice any signs of trouble with her breathing. After the scan, we will meet with her dermatologist who is now her doctor that we will be seeing for the PHACE. I don’t know when the MRI will be reviewed, but neurology will also review it and then decide if Elyse should be on aspirin therapy because of her abnormal brain vessels. so we'll see what happens.
In two weeks, we will be taking her to Milwaukee for another head MRI/MRA. This will be her first scan in Milwaukee. The doctors wanted a scan with their settings. I guess each hospital does it differently and in Milwaukee, they have a specific protocol for the PHACE children, which I like. She will be sedated, which will also be a first time. They will use general Anesthesia if they notice any signs of trouble with her breathing. After the scan, we will meet with her dermatologist who is now her doctor that we will be seeing for the PHACE. I don’t know when the MRI will be reviewed, but neurology will also review it and then decide if Elyse should be on aspirin therapy because of her abnormal brain vessels. so we'll see what happens.
Friday, September 11, 2009
Tuesday, September 8, 2009
1st day of pre-k!
Before I begin to update... Please pray for 6 year old Molly who lives in the UK. Molly, like Elyse has PHACE Syndrome. Yesterday her mother informed all of us (in the PHACE Community) that Molly suffered a major stroke and has a life threatening aneurysm. We are all very sad and frighten. Please pray for Molly and her family.
Now for Elyse's update...
Today was Elyse's first day of prek. As expected, she did great. No tears. As soon as we walked into the classroom, she took off her bag and left us. Parents had a meeting in another room and the kids stayed with the assistants for 45 minutes. When we came to get her, she did not want to leave. They had taken the kids to the playground, so i had to go in and drag her out. =) she's looking forward to it tomorrow.
Nap time! Very exhausted.
Now for Elyse's update...
Today was Elyse's first day of prek. As expected, she did great. No tears. As soon as we walked into the classroom, she took off her bag and left us. Parents had a meeting in another room and the kids stayed with the assistants for 45 minutes. When we came to get her, she did not want to leave. They had taken the kids to the playground, so i had to go in and drag her out. =) she's looking forward to it tomorrow.
Leaving school. =) Look at that face. She was not happy.
Nap time! Very exhausted.
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