Thursday, April 22, 2010
Congrats to Dominic!
My sweet, smart, and charming boy has been accepted into the Talented and Gifted Program (TAG) for first grade! The TAG team did testing early at the beginning of the year and he tested as gifted in language arts AND math!!! Woohoo! WTG, little man! I am so stinkin' proud of him!
Wednesday, April 21, 2010
A better day
I don't want to get my hopes up after just one dose of Abilify, but Anna had a great day at school today! I got an email this morning saying that her morning was going great. Then when I picked up the kids this afternoon, her teacher gave me a thumbs up and said it was a fantastic day. I burst into tears and sobbed on her shoulder. The relief I felt is like nothing I can explain. Day after day it's been awful, I can't imagine what it's been like being in Anna's head and body. She also wasn't as hungry all day, that would be a very nice side effect for her right now.
Thanks so much for all of your suppoert and prayers. I have truly been moved by your love.
Thanks so much for all of your suppoert and prayers. I have truly been moved by your love.
Tuesday, April 20, 2010
Anna update... endo, behavior, and more
Well... yesterday was the worst day yet at school. The principal called me just as I was leaving to pick up the kids and they'd had Anna in room 300 (their equivalent to in-school suspension) since 1:30 or so. I can't even bear to write all the things she did. Let's just say that this child has no impulse control at this time. She knows right from wrong, she knows that she is not supposed to do these things, yet she cannot stop. She is immediately remorseful and sorry. We are now in week three of this behavior. We are having an emergency ARD on Thursday to institute a Behavior Intervention Plan. Yesterday, Anna got a pink slip... a discipline referral which will go into her record. What worries me most is the longterm social impact of her friends witnessing this... will she ever have friends now?
We saw the endo last week for our follow-up to the MRI, ultrasound, and blood work that was done in February. Her MRI was normal, the ultrasound showed that her uterus and ovaries have started maturing for puberty but menstruation is not imminent. Since she just turned nine, we're not going to stop the premature puberty. Compared to her peers, she is much bigger, especially since she repeated kindergarten and is a year older than them. They haven't seemed to notice though, or just don't care.
Her blood work showed some abnormalities. Her prolactin levels were very elevated and that can be attributed to being on Risperdal. Her thyroid levels were also elevated, so they want to repeat those next month and scan her thyroid gland to see if it is undersized or in an unusual location. Her weight held steady so the dietary changes I made at the beginning of the year are working! There were some other minor things but overall it appears that Risperdal has caused her body to grow too quickly, caused some hormonal problems, and is now not effective anymore.
After I got off the phone yesterday with the principal, I called the child psychiatrist's office back that I'd contacted last week... begging the office manager to have the doctor call me. I had written a long email on Friday going through Anna's history, her current issues, and what we are looking for. He only accepts new patients on a case-by-case basis and of course, doesn't take insurance. Sigh. I like him though... he treats Jenny for her depression and he is willing to look outside of Western medicine to see the whole person, not just throw drugs at them. He called me and said he would take Anna's case. Whew! He wants to talk with Anna's neuro since she is so complicated.
I then talked with Anna's neuro via email (I love that he allows this!). He agrees that the Risperdal has stopped working and is going to transition her immediately to Abilify. The side effects should not cause weight gain or an increase in prolactin though I did read that insomnia is common. It's been many years since Anna hasn't slept (the first five years of her life, sleep was elusive, very, very elusive)... hopefully it won't be bad. So we have a plan! YES! New med, BIP, psych... I hope within a week or so we have our little girl back. If this doesn't work, I'm afraid I'll have to pull her out of school. I can homeschool her if I have to but that won't help her learn how to navigate the real world, deal with sensory input, and make progress socially. Isn't it funny that the academics are secondary to what our school goals are for her?
I still need to schedule the ortho appointment to look at the kyphoscoliosis, the cardio appoinment for the echo of her heart, and the thyroid scan to look at her gland. I also need to call the geneticist and see if the Fragile X and fibrillin test results are back. Right now, we're in survival mode and it's one thing at a time. Oh and I almost forgot, Anna's not hearing well. Even the school has noticed that she can't hear, we're having to repeat everything we say and talk in a loud voice for her to hear us... so I have a hearing test and ENT appointment scheduled in a couple of weeks.
Breathe.
We saw the endo last week for our follow-up to the MRI, ultrasound, and blood work that was done in February. Her MRI was normal, the ultrasound showed that her uterus and ovaries have started maturing for puberty but menstruation is not imminent. Since she just turned nine, we're not going to stop the premature puberty. Compared to her peers, she is much bigger, especially since she repeated kindergarten and is a year older than them. They haven't seemed to notice though, or just don't care.
Her blood work showed some abnormalities. Her prolactin levels were very elevated and that can be attributed to being on Risperdal. Her thyroid levels were also elevated, so they want to repeat those next month and scan her thyroid gland to see if it is undersized or in an unusual location. Her weight held steady so the dietary changes I made at the beginning of the year are working! There were some other minor things but overall it appears that Risperdal has caused her body to grow too quickly, caused some hormonal problems, and is now not effective anymore.
After I got off the phone yesterday with the principal, I called the child psychiatrist's office back that I'd contacted last week... begging the office manager to have the doctor call me. I had written a long email on Friday going through Anna's history, her current issues, and what we are looking for. He only accepts new patients on a case-by-case basis and of course, doesn't take insurance. Sigh. I like him though... he treats Jenny for her depression and he is willing to look outside of Western medicine to see the whole person, not just throw drugs at them. He called me and said he would take Anna's case. Whew! He wants to talk with Anna's neuro since she is so complicated.
I then talked with Anna's neuro via email (I love that he allows this!). He agrees that the Risperdal has stopped working and is going to transition her immediately to Abilify. The side effects should not cause weight gain or an increase in prolactin though I did read that insomnia is common. It's been many years since Anna hasn't slept (the first five years of her life, sleep was elusive, very, very elusive)... hopefully it won't be bad. So we have a plan! YES! New med, BIP, psych... I hope within a week or so we have our little girl back. If this doesn't work, I'm afraid I'll have to pull her out of school. I can homeschool her if I have to but that won't help her learn how to navigate the real world, deal with sensory input, and make progress socially. Isn't it funny that the academics are secondary to what our school goals are for her?
I still need to schedule the ortho appointment to look at the kyphoscoliosis, the cardio appoinment for the echo of her heart, and the thyroid scan to look at her gland. I also need to call the geneticist and see if the Fragile X and fibrillin test results are back. Right now, we're in survival mode and it's one thing at a time. Oh and I almost forgot, Anna's not hearing well. Even the school has noticed that she can't hear, we're having to repeat everything we say and talk in a loud voice for her to hear us... so I have a hearing test and ENT appointment scheduled in a couple of weeks.
Breathe.
Labels:
anxiety,
autism,
autistic,
behavior,
endocrinologist,
epilepsy,
mental retardation,
neurologist,
PDD-NOS,
perseveration,
precocious puberty,
special needs
Wednesday, April 14, 2010
No motivation...
... to do anything.
(I've had this window open all day... I keep adding and deleting to this post. Wondering if I should keep it in draft or publish it. It is very personal. But writing and sharing is how I process, so if you do end up reading this, thank you.)
I don't want to make siggies or layouts. I don't want to exercise or eat right. I don't want to tackle my to-do list. I have a mile-long list of appointments to make for Anna, my sink is full of dirty dishes, and I have someone who is waiting on me for a paid request.
I don't know if you saw my Facebook this weekend, but a little boy was killed in our neighborhood this weekend. He was a kindergartner at Dominic's school and the boy's stepsister is in Dominic's class. His little body was dumped a few blocks from our house like a bag of trash and I'm completely tortured by it and can't stop thinking about him. (I may share more about "mind torture"... it is something that I struggle with a lot, especially at night... but that subject can be another post at another time.)
His name was Julian and he was 5 years old, just one week younger than Dominic. The funeral is tomorrow.
Julian was staying with his father's girlfriend, his stepsister (also age 5), and his 7-month old half-brother. The father says he hadn't seen Julian in almost a week. And the mom hadn't seen her son in a month. There isn't an official cause of death yet and the police feel that Julian knew his killer. Right now, they have no named suspects. The dad has a criminal history and he's only 21 years old. When Julian was a baby, CPS was called and they cited neglectful supervision after he was scratched when his mom and dad were arguing.
I keep thinking about this little boy, not seeing his parents before he died. He wasn't at school Thursday or Friday. The father's girlfriend woke up Saturday morning at 5:30, found Julian missing and the front door unlocked. His body was discovered at 10:15 a.m. What happened to him? The police say the girlfriend is not a suspect. CPS took her other children (the stepsister who is in Dominic's class and a baby boy that is the dad's and hers together). What about the stepsister? Her stepbrother dies and she's taken away from her mom? She's not in school, I wonder where she is and how she's doing.
Since Dominic is sick, he slept with me last night. I kept waking up with my heart racing, sitting bolt upright and studying my son. Do you ever notice how small children seem when they sleep? Dominic seemed so tiny and fragile. I kept touching him all night, running my hands over his head, feeling his little bones. I can't imagine someone hurting a child, I can't. My mind is torturing me. I haven't slept well since we heard about Julian.
My heart goes out to his family. I hope none of them are involved in this tragedy. I hope we get answers. As a community, we are a very caring and involved presence in our children's lives. It affects everyone here. I guess I needed to share, maybe it will help my mind to stop this endless circling.
(I've had this window open all day... I keep adding and deleting to this post. Wondering if I should keep it in draft or publish it. It is very personal. But writing and sharing is how I process, so if you do end up reading this, thank you.)
I don't want to make siggies or layouts. I don't want to exercise or eat right. I don't want to tackle my to-do list. I have a mile-long list of appointments to make for Anna, my sink is full of dirty dishes, and I have someone who is waiting on me for a paid request.
I don't know if you saw my Facebook this weekend, but a little boy was killed in our neighborhood this weekend. He was a kindergartner at Dominic's school and the boy's stepsister is in Dominic's class. His little body was dumped a few blocks from our house like a bag of trash and I'm completely tortured by it and can't stop thinking about him. (I may share more about "mind torture"... it is something that I struggle with a lot, especially at night... but that subject can be another post at another time.)
His name was Julian and he was 5 years old, just one week younger than Dominic. The funeral is tomorrow.
Julian was staying with his father's girlfriend, his stepsister (also age 5), and his 7-month old half-brother. The father says he hadn't seen Julian in almost a week. And the mom hadn't seen her son in a month. There isn't an official cause of death yet and the police feel that Julian knew his killer. Right now, they have no named suspects. The dad has a criminal history and he's only 21 years old. When Julian was a baby, CPS was called and they cited neglectful supervision after he was scratched when his mom and dad were arguing.
I keep thinking about this little boy, not seeing his parents before he died. He wasn't at school Thursday or Friday. The father's girlfriend woke up Saturday morning at 5:30, found Julian missing and the front door unlocked. His body was discovered at 10:15 a.m. What happened to him? The police say the girlfriend is not a suspect. CPS took her other children (the stepsister who is in Dominic's class and a baby boy that is the dad's and hers together). What about the stepsister? Her stepbrother dies and she's taken away from her mom? She's not in school, I wonder where she is and how she's doing.
Since Dominic is sick, he slept with me last night. I kept waking up with my heart racing, sitting bolt upright and studying my son. Do you ever notice how small children seem when they sleep? Dominic seemed so tiny and fragile. I kept touching him all night, running my hands over his head, feeling his little bones. I can't imagine someone hurting a child, I can't. My mind is torturing me. I haven't slept well since we heard about Julian.
My heart goes out to his family. I hope none of them are involved in this tragedy. I hope we get answers. As a community, we are a very caring and involved presence in our children's lives. It affects everyone here. I guess I needed to share, maybe it will help my mind to stop this endless circling.
Friday, April 9, 2010
On Wings of Dreams by AnnaBV Designs
On sale today at ScrapOrchard, AnnaBV Designs is releasing her newest kit, On Wings of Dreams. It's filled with gorgeous, rich colors and beautiful elements for scrapping those sleepy-time pictures. She has also created a set of four quickpages and some coordinating wordart.
On Wings of Dreams

On Wings of Dreams Quickpages

On Wings of Dreams Wordart

My Layout

Thanks for looking!
On Wings of Dreams

On Wings of Dreams Quickpages

On Wings of Dreams Wordart

My Layout

Thanks for looking!
Labels:
"On Wings of Dreams",
AnnaBV Designs,
digital scrapbook,
digital scrapbook kit,
digital scrapbooking,
scrapbook,
ScrapOrchard
Thursday, April 8, 2010
Thoughtful Thursday: bare feet and administrators
Last week, Jenny shared with me an event that she was very excited about... "One Day Without Shoes 2010" sponsored by TOMS. Today, Thursday, April 8th, is a day to go without shoes to "raise awareness about the impact a simple pair of shoes can have on a child’s life." This is a global event and is present on Facebook and Twitter as well as through the TOMS website, and Jenny was so moved by this simple act that she invited her friends at school to participate in not wearing shoes today.
Please take a few minutes to read about the event and why it's important...
"One Day Without Shoes 2010".
I understand that being a school administrator these days is a difficult job. You're not allowed to use common sense (having Advil is considered having drugs) and you have to follow so many silly rules. There are liability issues too, I'm sure. Jenny called me with great disappointment in her voice this morning saying that the school administrators were not allowing the kids to go barefoot at school today in support of this event. Kids caught barefoot would be given a referral and it would be put on their record. So I took Jenny some shoes.
Wouldn't it be refreshing if just once someone in charge took a stand and said, "Let's all take off our shoes!" followed by a dramatic flipping off of heels across the room? No, we must condition our forward-thinking children to be cattle and follow the herd. You mustn't break the rules, you mustn't question authority. It's just a frustrating example of the condition of our society. There isn't even any wiggle room for a negotiated happy medium such as going barefoot during class but wearing shoes while walking in between classes. Oy vay.
I'm still proud of my sweet Jenny for making a statement and attempting to raise awareness for something we all take for granted. Do you know that some of her peers were so derisive of her support that they brought two pairs of shoes to school today to counteract her statement? There is so much wrong with that I don't even know where to start.
Please take a few minutes to read about the event and why it's important...
"One Day Without Shoes 2010".
I understand that being a school administrator these days is a difficult job. You're not allowed to use common sense (having Advil is considered having drugs) and you have to follow so many silly rules. There are liability issues too, I'm sure. Jenny called me with great disappointment in her voice this morning saying that the school administrators were not allowing the kids to go barefoot at school today in support of this event. Kids caught barefoot would be given a referral and it would be put on their record. So I took Jenny some shoes.
Wouldn't it be refreshing if just once someone in charge took a stand and said, "Let's all take off our shoes!" followed by a dramatic flipping off of heels across the room? No, we must condition our forward-thinking children to be cattle and follow the herd. You mustn't break the rules, you mustn't question authority. It's just a frustrating example of the condition of our society. There isn't even any wiggle room for a negotiated happy medium such as going barefoot during class but wearing shoes while walking in between classes. Oy vay.
I'm still proud of my sweet Jenny for making a statement and attempting to raise awareness for something we all take for granted. Do you know that some of her peers were so derisive of her support that they brought two pairs of shoes to school today to counteract her statement? There is so much wrong with that I don't even know where to start.
Sunday, April 4, 2010
Rough week
Thursday afternoon, the phone rings. "Hello, this Holly," I answer. "Hi, Mrs. Thomspon, it's Mrs. C, the assistant principal. Anna has had another really rough day and we are required to report to you what has happened." My stomach sinks, and I feel deflated.
Again in math resource, a meltdown. It started with Anna tapping some blocks on a table. It was disrupting the small group. The teacher attempts to redirect reminding Anna that the manipulatives are used as a tool not a toy. She continued to tap the blocks then started banging them. The teacher warns Anna, then she just escalates. The teacher had to removed the children from the room (again), call for help (again), and by the time Mrs. C got there, she had... and I quote... "destroyed the room."
I exploded. "Destroyed the room? That is very strong language. What exactly do you mean by destroyed the room?" I could feel my pulse beating in my throat. Well, she backpedaled, no property was permanently damaged. But any item within her reach was thrown. She had even upended a table and chairs. I was horrified. First that my usually sweet little girl was this enraged and second that the teacher had been unable to prevent this level of destruction and rage. I felt like saying, "WTF???"
I got angry. I admit it, I was mad and embarrassed and wanting to blame someone. So I first got angry with the teacher. Maybe she wasn't recognizing Anna's triggers and intervening in time. Historically, this particular class and this particular teacher have been a problem for Anna. She has a behavior chart that follows her around throughout the day; she can earn up to 3 apples per subject and if she gets 20 or more apples at the end of the day, she gets to choose a prize from the prize box. Looking over this chart for the year, you can see that Anna has good days, earning 3 apples in all subjects except math. So it makes you wonder.
As I continued to talk with Mrs. C, I also mentioned that at Anna's ARD last month, math was the only subject where Anna did not make any signficant progress. This is definitely an academic area that is extremely challenging for her. That got me thinking... maybe it's the subject, not the teacher. Maybe it wouldn't matter who was teaching math to Anna, she would struggle with it. If something is difficult to grasp, it would be hard to stay motivated to perform in that subject.
Feeling a little chagrined, I mentioned this thought to Mrs. C. I offered to come observe Anna in math to see if I could spot anything that could be done differently. But Mrs. C pointed out that all week last week, Anna struggled in all areas, not just math... math was just the tipping point. We did see similar behavior at home. She would get fixated on wanting something unreasonable, we'd say no, she's get angry calling us stupid, throwing things, being completely oppositional. She refused to listen, go to timeout, do anything we asked, etc. She even hit me on Friday. She is in crisis. She is crying for help.
I called the endo's office Thursday after getting off the phone with the school. I finally got a few answers about Anna's blood work but no real answers. Her TSH is elevated, her prolactin is elevated. Her abdominal ultrasound showed her to be in pre-puberty. They want to repeat some labs next week then we see the endo on 4/13. I don't think her hormones and body chemistry could be causing these major behavioral incidents. We talked briefly about the Risperdal... should her dose go up? Is she overmedicated with the combination of that and the Lexapro? Is she actually bipolar like we've been wondering since she was 3? Have these been bipolar mood swings and rapid cycling? In the car on the way home from school, Anna was raging at me because she wanted to see a girl in her class. I had to pull over and put her in the back row of the van because she was throwing things at me while I was driving and kicking the back of my seat hard enough to make me jerk. I stayed totally calm and dispassionate while I moved her. I ignored her. Within 10 minutes, she was back and normal. ???
(I have to also mention that Thursday's folder brought TWO notes home for Dominic for bad behavior, both requiring student and parent signature to review expectations. Sigh.)
Then after those two phone calls, the math teacher calls. She is lovely. Concerned, appropriately worried, and wanting our input. The usual strategies are not working to help Anna. (Yeah, we can relate... we're experiencing that at home as well.) I feel guilty for blaming her. It's hard to trust that the teachers will like Anna when she is being so hard to like. I want to protect her. I also feel embarrassed by her behavior and feel it's a reflection of my parenting. I want to explain away her behavior, to have it make sense. But I also want to hold her accountable. In the end, it doesn't matter what is causing this acting out... it is unacceptable and cannot be tolerated.
This weekend, Curtis and I talked a lot about Anna. Is she being bratty and can control her escalating behaviors? Is she out of control? How do we hold her accountable? We kept with consistency... she lost privileges, she went to timeout, we praised good behavior, etc. It is so hard sometimes, especially when we don't know what is causing these dramatic mood swings. Everyone on Anna's team at school is worried. Sometimes these shifts precede a seizure or cluster of seizures. Is she neurologically off? Is it medication related? Is it bipolar? Is it hormones? Frustration? Should she see a psychiatrist? Is it that Anna and I moved back in a month ago and she is having a hard time with that? A combination of these? WHAT???
There are no answers. No one knows. No one knows what she has or how to best to treat her. We just deal with each symptom that is screaming for priority at the moment. I hope we are doing right by her.
Again in math resource, a meltdown. It started with Anna tapping some blocks on a table. It was disrupting the small group. The teacher attempts to redirect reminding Anna that the manipulatives are used as a tool not a toy. She continued to tap the blocks then started banging them. The teacher warns Anna, then she just escalates. The teacher had to removed the children from the room (again), call for help (again), and by the time Mrs. C got there, she had... and I quote... "destroyed the room."
I exploded. "Destroyed the room? That is very strong language. What exactly do you mean by destroyed the room?" I could feel my pulse beating in my throat. Well, she backpedaled, no property was permanently damaged. But any item within her reach was thrown. She had even upended a table and chairs. I was horrified. First that my usually sweet little girl was this enraged and second that the teacher had been unable to prevent this level of destruction and rage. I felt like saying, "WTF???"
I got angry. I admit it, I was mad and embarrassed and wanting to blame someone. So I first got angry with the teacher. Maybe she wasn't recognizing Anna's triggers and intervening in time. Historically, this particular class and this particular teacher have been a problem for Anna. She has a behavior chart that follows her around throughout the day; she can earn up to 3 apples per subject and if she gets 20 or more apples at the end of the day, she gets to choose a prize from the prize box. Looking over this chart for the year, you can see that Anna has good days, earning 3 apples in all subjects except math. So it makes you wonder.
As I continued to talk with Mrs. C, I also mentioned that at Anna's ARD last month, math was the only subject where Anna did not make any signficant progress. This is definitely an academic area that is extremely challenging for her. That got me thinking... maybe it's the subject, not the teacher. Maybe it wouldn't matter who was teaching math to Anna, she would struggle with it. If something is difficult to grasp, it would be hard to stay motivated to perform in that subject.
Feeling a little chagrined, I mentioned this thought to Mrs. C. I offered to come observe Anna in math to see if I could spot anything that could be done differently. But Mrs. C pointed out that all week last week, Anna struggled in all areas, not just math... math was just the tipping point. We did see similar behavior at home. She would get fixated on wanting something unreasonable, we'd say no, she's get angry calling us stupid, throwing things, being completely oppositional. She refused to listen, go to timeout, do anything we asked, etc. She even hit me on Friday. She is in crisis. She is crying for help.
I called the endo's office Thursday after getting off the phone with the school. I finally got a few answers about Anna's blood work but no real answers. Her TSH is elevated, her prolactin is elevated. Her abdominal ultrasound showed her to be in pre-puberty. They want to repeat some labs next week then we see the endo on 4/13. I don't think her hormones and body chemistry could be causing these major behavioral incidents. We talked briefly about the Risperdal... should her dose go up? Is she overmedicated with the combination of that and the Lexapro? Is she actually bipolar like we've been wondering since she was 3? Have these been bipolar mood swings and rapid cycling? In the car on the way home from school, Anna was raging at me because she wanted to see a girl in her class. I had to pull over and put her in the back row of the van because she was throwing things at me while I was driving and kicking the back of my seat hard enough to make me jerk. I stayed totally calm and dispassionate while I moved her. I ignored her. Within 10 minutes, she was back and normal. ???
(I have to also mention that Thursday's folder brought TWO notes home for Dominic for bad behavior, both requiring student and parent signature to review expectations. Sigh.)
Then after those two phone calls, the math teacher calls. She is lovely. Concerned, appropriately worried, and wanting our input. The usual strategies are not working to help Anna. (Yeah, we can relate... we're experiencing that at home as well.) I feel guilty for blaming her. It's hard to trust that the teachers will like Anna when she is being so hard to like. I want to protect her. I also feel embarrassed by her behavior and feel it's a reflection of my parenting. I want to explain away her behavior, to have it make sense. But I also want to hold her accountable. In the end, it doesn't matter what is causing this acting out... it is unacceptable and cannot be tolerated.
This weekend, Curtis and I talked a lot about Anna. Is she being bratty and can control her escalating behaviors? Is she out of control? How do we hold her accountable? We kept with consistency... she lost privileges, she went to timeout, we praised good behavior, etc. It is so hard sometimes, especially when we don't know what is causing these dramatic mood swings. Everyone on Anna's team at school is worried. Sometimes these shifts precede a seizure or cluster of seizures. Is she neurologically off? Is it medication related? Is it bipolar? Is it hormones? Frustration? Should she see a psychiatrist? Is it that Anna and I moved back in a month ago and she is having a hard time with that? A combination of these? WHAT???
There are no answers. No one knows. No one knows what she has or how to best to treat her. We just deal with each symptom that is screaming for priority at the moment. I hope we are doing right by her.
Thursday, April 1, 2010
March 2010 Siggies Slideshow
Labels:
"message board signatures",
siggies,
siggy,
signatures
Monday, March 29, 2010
Calls
This morning the children's hospital called asking that I bring Anna back in for another blood draw. Apparently they outsourced some of Anna's bloodwork from the February MRI visit and they are missing a cortisol level. After our visit with the geneticist last week, I called the endocrinologist twice to find out what the "highly abnormal" blood test results were and they kept saying they were waiting on one more test to come back. I guess it was never drawn or the results were lost, I'm not sure. So I have to make Anna fast tomorrow morning and take her in for another blood draw. Ugh, poor thing. She gets nearly hysterical and I hate putting her through that. Well at least we can get the genetic blood tests done now instead of in April... I have the orders for the Fragile X DNA test and the fibrillin DNA test so I'll take those in with me. I wonder how long we're going to have to wait on the cortisol and the genetic results. The endo doesn't want to talk to me until she has "the whole picture"...
I also received a call this afternoon from the assistant principal at the elementary school. Anna had a meltdown in math resource and Mrs. C had to intervene. When she got to the classroom, Anna was lying prone on the floor and there were books and papers strewn about the room. The other students had to be removed. Anna refused to go to the processing room, so Mrs. C took her to the office. She had to have a timeout but kept having to have it restarted for getting up. She kicked Mrs. C 5 times in the shin, hard enough to bruise. She was calling the staff and students "stupid" and being mean, belligerent, non-compliant, and hostile. Sigh. What is going on with her?
I also received a call this afternoon from the assistant principal at the elementary school. Anna had a meltdown in math resource and Mrs. C had to intervene. When she got to the classroom, Anna was lying prone on the floor and there were books and papers strewn about the room. The other students had to be removed. Anna refused to go to the processing room, so Mrs. C took her to the office. She had to have a timeout but kept having to have it restarted for getting up. She kicked Mrs. C 5 times in the shin, hard enough to bruise. She was calling the staff and students "stupid" and being mean, belligerent, non-compliant, and hostile. Sigh. What is going on with her?
Friday, March 26, 2010
New releases today from By Becca and AnnaBV Designs!
First up is a gorgeous new kit from By Becca at ScrapMatters called Something Beautiful After the Rain. Spring approaches softly and with it brings the cleansing rains that leave the world awash in sparkling clean colors. Everything is fresh and new as the world awakes. Something Beautiful After the Rain captures the world in those moments of refreshment -- clear clean blues, fresh bright greens and touches of bright yellows and pinks, and this kit also includes 2 full alphas.
Something Beautiful After the Rain

My Layouts


Next, AnnaBV Designs is releasing this adorable kit, Spring Cleaning, today at ScrapOrchard. It's a fun kit filled with cleaning elements, clothesline, flowers, and much more. Get ready to roll up your sleeves and scrap some pictures of spring cleaning!
Spring Cleaning

My Layout

Thanks for looking!
Something Beautiful After the Rain

My Layouts


Next, AnnaBV Designs is releasing this adorable kit, Spring Cleaning, today at ScrapOrchard. It's a fun kit filled with cleaning elements, clothesline, flowers, and much more. Get ready to roll up your sleeves and scrap some pictures of spring cleaning!
Spring Cleaning

My Layout

Thanks for looking!
Labels:
AnnaBV Designs,
By Becca,
ScrapMatters,
ScrapOrchard
Tuesday, March 23, 2010
Pediatric geneticist visit
I got a call yesterday reminding me of a visit with the geneticist for Anna this morning. Ugh! I did NOT have that appointment on my calendar so I'm glad they called. I don't know if you all remember but before Anna's MRI and ultrasound last month, I tried and tried and tried to get into to see the geneticist before the procedure. I thought these new symptoms might give Dr. I another clue as to what is going on with my baby girl. We did get an appointment set up only to have the doctor cancel it due to illness so we did not get to see her prior to the MRI. I totally forgot that we had rescheduled it for today.
Anyway, we get there at 9:00 a.m., right on time. At 9:35, I poked my nose out of the exam room scanning for a nurse wanting an ETA from the doc. Waiting that long with Anna is a chore! Nothing from the nurse. At 9:45, I went out again and asked again a little nastier... everyone scurried about and said she'd be in within the next few minutes and that she was having computer problems. Grrr. I threatened that if she wasn't in by 10, I would leave. I HATE that doctors make you wait that long. How hard would it have been to come in at 9:15 and say, "Dr. I is running late/having computer problems/blah blah blah, would you like to wait or reschedule?" Seriously!!!
So I was boiling when she appeared at 9:53. She apologized for the delay, then immediately scooted over to Anna and starting engaging in the nicest conversation with her. I felt my anger melting away as I saw a full page of handwritten notes on the doc's notepad and saw how fully she gave Anna her attention. Within just a few minutes, I was back in find-a-diagnosis mode... it was nearly three years ago when we last saw Dr. I. She has really prepared for our appointment by reviewing Anna's history and recent tests (granted, it was in the 50 minutes we were waiting, but I was still pleased).
It's a very emotional process to look for a diagnosis. Years ago, it was a much stronger drive to find an answer and when test after test came back normal, I began giving up hope that we'd ever find an answer. Well, that door has been opened again. Wouldn't it be something to get a real diagnosis at 9 years of age?
The doc mentioned that Anna's MRI and ultrasound results from last month were normal but her blood work was highly abnormal. Then she proceeded to say that the endo would need to go over all of that with us. Ugh. You bet I was on the phone to the endo's office as soon as I left there, but I didn't hear back from them yet. I'm glad her MRI and ultrasound were normal though, that's really good. I wish they would have called already.
Dr. I wants to look at Fragile X. I thought Anna was tested for this as a toddler, but she wants to do the full DNA sequencing for Fragile X. When I looked at the checklist of symptoms... well, my jaw hit the floor. Anna has nearly every one of these. Sigh.
We also talked a long time about connective tissue disease. Dr. I feels that Anna actually has two genetic syndromes, one connective tissue related and the other causing the seizures, PDD-NOS, anxiety, and cognitive challenges. My mom's mom (now deceased), my mom, and myself have a genetic connective tissue disease. The last geneticist I saw said that I have five of the six markers for Ehler-Danlos Syndrome. Anna is much more affected than I am. The doc noticed that Anna's joint laxity has gotten much worse over the last three years and that she has developed kyphosis (like a hunch in the upper shoulders). So she is referring us to an orthopedic doc. She also wants us to see a cardiologist to look for connective tissue issues in her heart (I have a mitral valve prolapse, so we need to see if Anna does too). During the physical exam, Dr. I is really exclaiming over Anna's flexible elbows, hands, wrists, and fingers and Anna says, "Is that good?" to which Dr. I replies, "No honey, it's really not." It was very sweetly said, but humbling too.
The 2-hour visit exhausted me and Anna... I'm anxious about the blood test results so as soon as I get them, I'll let everyone know. Dr. I was pretty sure the endo would be ordering more blood work soon, so we'll be getting the Fragile X DNA test and fibrillin (connective tissue) DNA test added onto that blood draw. Anna has such a hard journey... there are moments that really hit me and today was one of them.
On a happy note, I got to take Anna out to lunch at her favorite restaurant before returning to school. How cute is this girl, huh?

Anyway, we get there at 9:00 a.m., right on time. At 9:35, I poked my nose out of the exam room scanning for a nurse wanting an ETA from the doc. Waiting that long with Anna is a chore! Nothing from the nurse. At 9:45, I went out again and asked again a little nastier... everyone scurried about and said she'd be in within the next few minutes and that she was having computer problems. Grrr. I threatened that if she wasn't in by 10, I would leave. I HATE that doctors make you wait that long. How hard would it have been to come in at 9:15 and say, "Dr. I is running late/having computer problems/blah blah blah, would you like to wait or reschedule?" Seriously!!!
So I was boiling when she appeared at 9:53. She apologized for the delay, then immediately scooted over to Anna and starting engaging in the nicest conversation with her. I felt my anger melting away as I saw a full page of handwritten notes on the doc's notepad and saw how fully she gave Anna her attention. Within just a few minutes, I was back in find-a-diagnosis mode... it was nearly three years ago when we last saw Dr. I. She has really prepared for our appointment by reviewing Anna's history and recent tests (granted, it was in the 50 minutes we were waiting, but I was still pleased).
It's a very emotional process to look for a diagnosis. Years ago, it was a much stronger drive to find an answer and when test after test came back normal, I began giving up hope that we'd ever find an answer. Well, that door has been opened again. Wouldn't it be something to get a real diagnosis at 9 years of age?
The doc mentioned that Anna's MRI and ultrasound results from last month were normal but her blood work was highly abnormal. Then she proceeded to say that the endo would need to go over all of that with us. Ugh. You bet I was on the phone to the endo's office as soon as I left there, but I didn't hear back from them yet. I'm glad her MRI and ultrasound were normal though, that's really good. I wish they would have called already.
Dr. I wants to look at Fragile X. I thought Anna was tested for this as a toddler, but she wants to do the full DNA sequencing for Fragile X. When I looked at the checklist of symptoms... well, my jaw hit the floor. Anna has nearly every one of these. Sigh.
We also talked a long time about connective tissue disease. Dr. I feels that Anna actually has two genetic syndromes, one connective tissue related and the other causing the seizures, PDD-NOS, anxiety, and cognitive challenges. My mom's mom (now deceased), my mom, and myself have a genetic connective tissue disease. The last geneticist I saw said that I have five of the six markers for Ehler-Danlos Syndrome. Anna is much more affected than I am. The doc noticed that Anna's joint laxity has gotten much worse over the last three years and that she has developed kyphosis (like a hunch in the upper shoulders). So she is referring us to an orthopedic doc. She also wants us to see a cardiologist to look for connective tissue issues in her heart (I have a mitral valve prolapse, so we need to see if Anna does too). During the physical exam, Dr. I is really exclaiming over Anna's flexible elbows, hands, wrists, and fingers and Anna says, "Is that good?" to which Dr. I replies, "No honey, it's really not." It was very sweetly said, but humbling too.
The 2-hour visit exhausted me and Anna... I'm anxious about the blood test results so as soon as I get them, I'll let everyone know. Dr. I was pretty sure the endo would be ordering more blood work soon, so we'll be getting the Fragile X DNA test and fibrillin (connective tissue) DNA test added onto that blood draw. Anna has such a hard journey... there are moments that really hit me and today was one of them.
On a happy note, I got to take Anna out to lunch at her favorite restaurant before returning to school. How cute is this girl, huh?
Labels:
anxiety,
autism,
autistic,
connective tissue disease,
epilepsy,
fibrillin,
Fragile X,
geneticist,
PDD-NOS,
precious puberty,
seizures
Sunday, March 21, 2010
New Release by AnnaBV Designs
I'm a couple of days late posting this new release at ScrapOrchard because I've been sick, but I'm so excited to share AnnaBV's newest kit, Fairy Spring! Isn't it so cute? I love the hand-drawn fairy, so whimsical! I used Autumn's new baby, Liam, as the subject for this layout, "Spring Dreams." There is also a coordinating alpha pack.
Fairy Spring

Fairy Spring Alpha

My Layout

Thanks for looking!
Fairy Spring

Fairy Spring Alpha

My Layout

Thanks for looking!
Labels:
"Fairy Spring",
AnnaBV Designs,
digital scrapbook,
digital scrapbook kit,
digital scrapbooking,
scrapbook,
ScrapOrchard
Friday, March 12, 2010
New Releases by AnnaBV Designs
I have two very special layouts to share with you today! First is a new kit called Hoppy Easter by AnnaBV Designs which is being released today at ScrapOrchard. Filled with handdrawn bunnies and yummy jelly beans, it's the perfect Easter kit. It also has coordinating alpha and wordart packs. My layout for this kit is very personal and bittersweet... I decided to scrap a memory from when Anna was 2 years old.
Hoppy Easter

Hoppy Easter Alpha

Hoppy Easter Wordart

My Layout

The journaling reads:
You were two years old and we were
celebrating Easter with the neighborhood
playgroup. These get-togethers were always
stressful for you and this day was no
different. You clung to me, so scared, not
wanting to join the kids. By the time we
got to the hunting grounds, all the eggs
were gone. My eyes pricked with tears...
tears that you had missed out, tears that
something that was supposed to be fun
caused so much anxiety. Some of the other
moms made their kids drop a few eggs and
you happily picked them up after the excited
children wandered off.
My heart ached for days.
It is difficult to look back at old pictures. At that time, we didn't yet know that Anna had autism and her first seizure was still a year into the future. Social situations caused so much panic in her... looking back, it was one of the signs of her autism; to me, it didn't resonate as any more than sensory overload at the time.
The second kit is called Wonderland. AnnaBV has teamed up with Jennifer Barrette to bring this wonderful kit full of Alice in Wonderland characters and elements. I had so much fun scrapping with this kit that I made everyone a free 12x12, 300 ppi quickpage based on my layout! The download link is at the end of the post.
Wonderland

My Layout

My Quickpage


Since this is my very first quickpage, I would be so so grateful for comments and feedback. Even just a quick thank you would be really appreciated!
Thanks for looking and downloading!
Hoppy Easter

Hoppy Easter Alpha

Hoppy Easter Wordart

My Layout

The journaling reads:
You were two years old and we were
celebrating Easter with the neighborhood
playgroup. These get-togethers were always
stressful for you and this day was no
different. You clung to me, so scared, not
wanting to join the kids. By the time we
got to the hunting grounds, all the eggs
were gone. My eyes pricked with tears...
tears that you had missed out, tears that
something that was supposed to be fun
caused so much anxiety. Some of the other
moms made their kids drop a few eggs and
you happily picked them up after the excited
children wandered off.
My heart ached for days.
It is difficult to look back at old pictures. At that time, we didn't yet know that Anna had autism and her first seizure was still a year into the future. Social situations caused so much panic in her... looking back, it was one of the signs of her autism; to me, it didn't resonate as any more than sensory overload at the time.
The second kit is called Wonderland. AnnaBV has teamed up with Jennifer Barrette to bring this wonderful kit full of Alice in Wonderland characters and elements. I had so much fun scrapping with this kit that I made everyone a free 12x12, 300 ppi quickpage based on my layout! The download link is at the end of the post.
Wonderland

My Layout

My Quickpage


Since this is my very first quickpage, I would be so so grateful for comments and feedback. Even just a quick thank you would be really appreciated!
Thanks for looking and downloading!
Labels:
"Hoppy Easter",
AnnaBV Designs,
digital scrapbook,
digital scrapbook kit,
digital scrapbooking,
scrapbook,
ScrapOrchard
Monday, March 8, 2010
Are you serious?
I have a YouTube channel that I set up 4 years ago when Anna was first diagnosed with PDD-NOS. I didn't know anything about this type of autism and looking back, I can now see signs all along that I didn't realize were related to autism. So I made a series of short videos about Anna, about her particular symptoms, and posted them. My purpose was to reach out to other parents like us, ones who wondered if they were alone. For the most part, the videos have been well-received and I have gotten many nice stories and comments from other parents and even adults living with autism. Every once in while, though, I get a head-scratcher comment like this one I got today...
My son was diagnosed as PDD_NOS when he was 2 but I'm beginning to wonder what the Dr. would say if she met him now. If this little girl is standard for PDD_NOS then my son must be classic autism. I would give anything if he could ask a question even if it was the same 50 times. He's almost 8 and has never even said his own name. You are sooo lucky that she is barely affected at all.
Are you serious? Barely affected at all? My first inclination was to fire back a snarky note (which in fact, I did, then deleted it about 10 minutes later). How can another mother say something like this, especially based on a 2-minute video clip taken 4 years ago? I can totally relate to the "I would give anything..." comment. I would give anything for Anna never to experience another seizure, ever. I would give anything for Anna to not be so scared of every social interaction every day, to the point that her anxiety makes her nearly nonfunctioning and she has to take medication now. I would give anything for Anna to not have to take yet another medication that keeps her from raging against her teachers and peers. I could go on and on.
But this is the part that really gets me... "You are sooo lucky that she is barely affected at all."
Barely affected.
Oh that's right. That's why she is 9 and in the 2nd grade instead of 3rd. That is why she has IEP goals in reading, writing, math, social studies, science, social skills, PE, OT, and ST. That is why she has a tested IQ between 57-65. That is why she has no real friends and sometimes the neighborhood kids hide when they see us coming. That's why her little brother already understands that he is to watch out for her even though he's only 5. That's why she had to have another MRI (I think it was her 4th or 5th?) a couple of weeks ago. That's why she still wears a pullup to bed and leaks through nearly every night because her brain doesn't wake her up when she urinates.
Yeah, you're right, lady... she's barely affected at all and I am "sooo" lucky.
The thing, I do realize how lucky we are in many ways. And I feel lucky to be Anna's mom, I really do. But in no way do I feel like Anna's life is any easier than anyone else's. She is the one who struggles, I can only watch and help.
My son was diagnosed as PDD_NOS when he was 2 but I'm beginning to wonder what the Dr. would say if she met him now. If this little girl is standard for PDD_NOS then my son must be classic autism. I would give anything if he could ask a question even if it was the same 50 times. He's almost 8 and has never even said his own name. You are sooo lucky that she is barely affected at all.
Are you serious? Barely affected at all? My first inclination was to fire back a snarky note (which in fact, I did, then deleted it about 10 minutes later). How can another mother say something like this, especially based on a 2-minute video clip taken 4 years ago? I can totally relate to the "I would give anything..." comment. I would give anything for Anna never to experience another seizure, ever. I would give anything for Anna to not be so scared of every social interaction every day, to the point that her anxiety makes her nearly nonfunctioning and she has to take medication now. I would give anything for Anna to not have to take yet another medication that keeps her from raging against her teachers and peers. I could go on and on.
But this is the part that really gets me... "You are sooo lucky that she is barely affected at all."
Barely affected.
Oh that's right. That's why she is 9 and in the 2nd grade instead of 3rd. That is why she has IEP goals in reading, writing, math, social studies, science, social skills, PE, OT, and ST. That is why she has a tested IQ between 57-65. That is why she has no real friends and sometimes the neighborhood kids hide when they see us coming. That's why her little brother already understands that he is to watch out for her even though he's only 5. That's why she had to have another MRI (I think it was her 4th or 5th?) a couple of weeks ago. That's why she still wears a pullup to bed and leaks through nearly every night because her brain doesn't wake her up when she urinates.
Yeah, you're right, lady... she's barely affected at all and I am "sooo" lucky.
The thing, I do realize how lucky we are in many ways. And I feel lucky to be Anna's mom, I really do. But in no way do I feel like Anna's life is any easier than anyone else's. She is the one who struggles, I can only watch and help.
Friday, March 5, 2010
ShamROCKZ by AnnaBV Designs
Anna has a new kit being released today at ScrapOrchard called "ShamROCKZ". Perfect for scrapping your Irish heritage, celebrating St. Patrick's Day, or even just loving your lucky life, ShamROCKZ can meet your needs. There is a coordinating alpha that has three different styles and a set of quickpages that are free with purchase for a limited time.
ShamROCKZ

ShamROCKZ Alpha

ShamROCKZ Quickpages

My layout

Thanks for looking!
ShamROCKZ

ShamROCKZ Alpha

ShamROCKZ Quickpages

My layout

Thanks for looking!
Tuesday, March 2, 2010
Happy 9th Birthday to my sweet Booski, Anna!
Today my baby girl turns nine years old. To be honest, there were times between ages three and five where I didn't think she'd survive this long. She is such a fighter and has gotten so much stronger. I truly love her with a part of me I didn't know existed. There is a fierce protectiveness, a pride when she accomplishes something she's been working so hard at, a wonder and joy at the everyday seen in a new way... she has made me grow as a parent and a person. And I am so thankful.
Happy Birthday, Anna! Nine things that I love about you are:
1. I love the way you call a cheeseburger a "cheese-hamburger" and that it is your favorite food.
2. I love the way you laugh at America's Funniest Home Videos like it's brand new even when you've seen an episode a dozen times.
3. I love the way you love babies, the same way I do.
4. I love the way you get concerned about your sister or brother if they don't feel well.
5. I love funny words (a game we play where we substitute potty words for real words in common songs).
6. I love waking up to feel you spooned up against me even though I put a pillow in between us.*
7. I love that you trust me so completely that when I ask you to do something that is scary to you, you do it anyway and are brave about it.
8. I love hearing you read a book, working so so hard to make sense of the words, and figuring it out.
9. I love YOU, for who you are.
*I sleep with Anna because of her seizures. She doesn't have them frequently, but they often occur in the middle of the night with no warning and she turns to her right and ends up with her face in a pillow. To avoid the risk of suffocation, I sleep with her.
As a newborn... oy, look at that jaundice!

Now

Thanks for reading!
Happy Birthday, Anna! Nine things that I love about you are:
1. I love the way you call a cheeseburger a "cheese-hamburger" and that it is your favorite food.
2. I love the way you laugh at America's Funniest Home Videos like it's brand new even when you've seen an episode a dozen times.
3. I love the way you love babies, the same way I do.
4. I love the way you get concerned about your sister or brother if they don't feel well.
5. I love funny words (a game we play where we substitute potty words for real words in common songs).
6. I love waking up to feel you spooned up against me even though I put a pillow in between us.*
7. I love that you trust me so completely that when I ask you to do something that is scary to you, you do it anyway and are brave about it.
8. I love hearing you read a book, working so so hard to make sense of the words, and figuring it out.
9. I love YOU, for who you are.
*I sleep with Anna because of her seizures. She doesn't have them frequently, but they often occur in the middle of the night with no warning and she turns to her right and ends up with her face in a pillow. To avoid the risk of suffocation, I sleep with her.
As a newborn... oy, look at that jaundice!

Now
Thanks for reading!
Monday, March 1, 2010
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