I know this is not a medical blog but just wondering if any one out there has had experience with Donnai-Barrow Syndrome.
It's a very rare genetic syndrome. Only one person in 200,000 in the US is estimated to have it. My daughter might have it
and there is not much info out there. With only five people in million with this syndrome. Not too many people knocking on congress' door to fund research.
Right now it's a toss up between Donnai-Barrow Syndrome and possibly Rett's Syndrome. Either way Kelly is a happy beautiful little girl who loves to climb on chairs and tables just to keep me on my toes.
Oh and her twin sister who has no medical issues just went poo poo on the potty today......YEAH for all those moms going crazy out there eventually it will happen... Of course she made a mess in her night night diaper. Every day is an adventure. : )
Wednesday, October 17, 2007
Tuesday, August 21, 2007
Neck spasms suck
Back in February, I woke up with a sore neck...thought I slept wrong on it....this happened for a few days in a row.
My neck would get stuck in one place, like if I held my cell phone by my neck or read a story to my daughter while she sat in my lap. I would push my chin with my hand until it didn't hurt.
OK....so after six months of this..I developed a burning sensation in my shoulder...so I thought the strain was getting worse...I guess I'm not so swift.....my body telling me something for quite a while and I need it to yell at me before I do anything.
Went to the Doc.....He shot my neck with litacaine.....that did not help at all.
He told me to stretch the muscle, have my husband massage, take advil and heating pads.
THAT SO DOES NOT WORK!!!!!!!!!!!!!!!!!!!!!!
Any one have experience with accupuncture or know of a type of specialist I should see. Its hurting now as I type this and it hurts when I feed my daughter at the table. Lifting arm at weird angle up and over... or somewhat twisting causing throbbing...
owwwie sniff sniff....so sad
My neck would get stuck in one place, like if I held my cell phone by my neck or read a story to my daughter while she sat in my lap. I would push my chin with my hand until it didn't hurt.
OK....so after six months of this..I developed a burning sensation in my shoulder...so I thought the strain was getting worse...I guess I'm not so swift.....my body telling me something for quite a while and I need it to yell at me before I do anything.
Went to the Doc.....He shot my neck with litacaine.....that did not help at all.
He told me to stretch the muscle, have my husband massage, take advil and heating pads.
THAT SO DOES NOT WORK!!!!!!!!!!!!!!!!!!!!!!
Any one have experience with accupuncture or know of a type of specialist I should see. Its hurting now as I type this and it hurts when I feed my daughter at the table. Lifting arm at weird angle up and over... or somewhat twisting causing throbbing...
owwwie sniff sniff....so sad
Saturday, August 18, 2007
Life goes by....
So I know everyone is so enthralled with my blog that you've all been dying for the next installment.
My little niece Jennifer turned 19 yesterday.....I miss her lots.
Kelly is out of school for the rest of the summer. We'll be going to LBI on Wednesday for a few days.
Sabrina has some class next week, digging for dinosaurs or something like that.
I'm waiting for my final delivery of drapes from JC Penney so I can pick out a paint color for my living room.
and my husband is still asleep.
Friends of ours are on a cruise in the Caribbean this week. They flew into Puerto Rico and there's a category 4
hurricane in the area. We can't reach them by phone and I don't know exactly the name of their cruise line.
We're hoping their vacation won't be ruined.
What's up with everyone else?
My little niece Jennifer turned 19 yesterday.....I miss her lots.
Kelly is out of school for the rest of the summer. We'll be going to LBI on Wednesday for a few days.
Sabrina has some class next week, digging for dinosaurs or something like that.
I'm waiting for my final delivery of drapes from JC Penney so I can pick out a paint color for my living room.
and my husband is still asleep.
Friends of ours are on a cruise in the Caribbean this week. They flew into Puerto Rico and there's a category 4
hurricane in the area. We can't reach them by phone and I don't know exactly the name of their cruise line.
We're hoping their vacation won't be ruined.
What's up with everyone else?
Monday, July 23, 2007
Great Date
Hi everyone. Guess what? Finally my husband and I were able to go out on a date....and it was wonderful.
We went to an Italian restaurant we used to go to all the time. It's been about three years since we were last there.
The food was still great. Then we went to hang out at my friends house....Hi Sue!!!...
Hope all you other parents out there get to go out on date's with your significant other too.
We went to an Italian restaurant we used to go to all the time. It's been about three years since we were last there.
The food was still great. Then we went to hang out at my friends house....Hi Sue!!!...
Hope all you other parents out there get to go out on date's with your significant other too.
Sunday, July 15, 2007
ho hum
Ok today is Sunday and my husband was paged into work. I'm home with the kids and should be going to a block party in about an hour but the only people I know who were invited aren't going to be there. yuk. I hate going to parties when I don't know any one. With any luck, it'll thunder storm and we'll come home but that will be just as boring. If I have to play Barbie dolls any more I'll go bonkers. Kelly just wants to climb on me and bite or pull hair. Sabrina wants to play Barbies. I want to read a good book but I haven't had a chance to do that for a while. The only time I can is at night and the girls are getting up early so I try to go to bed early. Ah yes, the nonsensical ramblings of a bored housewife.
Last night I spend over an hour making photo copies to apply for DDD benefits for Kelly. This should help now with respite care and a small stipend to help defray some out of pocket costs. Mostly it is for when she's over 18 years of age and we need help with additional vocational training as an adult or some type of housing. Let's pray for a miracle that she learns to talk and won't need special education in the future. I know its a big stretch......but if I can't hope for it who will?
Last night I spend over an hour making photo copies to apply for DDD benefits for Kelly. This should help now with respite care and a small stipend to help defray some out of pocket costs. Mostly it is for when she's over 18 years of age and we need help with additional vocational training as an adult or some type of housing. Let's pray for a miracle that she learns to talk and won't need special education in the future. I know its a big stretch......but if I can't hope for it who will?
Sunday, June 17, 2007
Bear with me and please read
I know I haven't posted in a while but things are busy just like everyone's life gets sometimes.
I have come across a couple of emails that were sent to me over the past few months that I would like to share with
the world. I would appreciate it if you take the time to read them and feel free to have others come and visit my blog
to read it. All comments are welcome.
I have come across a couple of emails that were sent to me over the past few months that I would like to share with
the world. I would appreciate it if you take the time to read them and feel free to have others come and visit my blog
to read it. All comments are welcome.
Remember its much harder for them.
This article is written from the vantage point of an
individual with an ASD (Autism Spectrum
Disorder). The article is reprinted with the
permission of editor/author Viki Gayhardt.
Feel free to reprint and share with your friends and
family during this holiday season.
“Dear Friends and Family” was written for the purpose of it being sent to relatives and hosts of holiday gatherings that might need a crash course in what to expect from their guest with autism.
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.
As you probably know, I am challenged by a hidden disability called autism or what some people refer to as a pervasive developmental disorder (PDD). Autism/PDD is a neurodevelopment disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see but which make it difficult for me to adapt to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and where to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn’t understand how the inhabitants communicated. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time.
You might think I am ignoring you—I am not. Rather, I am hearing everything and not knowing what is most important to respond to. Holidays are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful.
I often have to get away from all the commotion to calm down. It would be great if you had a private place set up where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people—I just have to get up and move about. Please don’t hold up your meal for me—go on without me and my parent’s will handle the situation the best way they know.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky—I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.
Don’t be disappointed if mommy hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable! Temple Grandin , a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.
When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!). Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things—just please be patient with me and understanding of how I have to cope… mom and dad have no control over how my autism makes me feel inside.
People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it “Self-regulation” or “stimming”. I might rock, hum, flick my fingers in my face; flap my arms or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world.
Sometimes I cannot stop myself from talking, singing, or partaking in an activity. The grown ups call this “perseverating”, which is kind of like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don’t want to come out of that comfortable place and join your hard-to-figure-out-world. Perseverative behaviors are good to a certain degree because they help me calm down. Please be respectful to my mom and dad if they let me “stim” for a while, as they know me best and what helps to calm me.
Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!). It hurts my parents’ feelings to be criticized for being over protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you tippies, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow tippy rules.
I am a unique person—an interesting person. I will find my place at this celebration that is comfortable for us all as long as you’ll try to view the world through my eyes!"

individual with an ASD (Autism Spectrum
Disorder). The article is reprinted with the
permission of editor/author Viki Gayhardt.
Feel free to reprint and share with your friends and
family during this holiday season.
“Dear Friends and Family” was written for the purpose of it being sent to relatives and hosts of holiday gatherings that might need a crash course in what to expect from their guest with autism.
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.
As you probably know, I am challenged by a hidden disability called autism or what some people refer to as a pervasive developmental disorder (PDD). Autism/PDD is a neurodevelopment disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see but which make it difficult for me to adapt to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and where to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn’t understand how the inhabitants communicated. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time.
You might think I am ignoring you—I am not. Rather, I am hearing everything and not knowing what is most important to respond to. Holidays are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful.
I often have to get away from all the commotion to calm down. It would be great if you had a private place set up where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people—I just have to get up and move about. Please don’t hold up your meal for me—go on without me and my parent’s will handle the situation the best way they know.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky—I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.
Don’t be disappointed if mommy hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable! Temple Grandin , a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.
When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!). Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things—just please be patient with me and understanding of how I have to cope… mom and dad have no control over how my autism makes me feel inside.
People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it “Self-regulation” or “stimming”. I might rock, hum, flick my fingers in my face; flap my arms or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world.
Sometimes I cannot stop myself from talking, singing, or partaking in an activity. The grown ups call this “perseverating”, which is kind of like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don’t want to come out of that comfortable place and join your hard-to-figure-out-world. Perseverative behaviors are good to a certain degree because they help me calm down. Please be respectful to my mom and dad if they let me “stim” for a while, as they know me best and what helps to calm me.
Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!). It hurts my parents’ feelings to be criticized for being over protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you tippies, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow tippy rules.
I am a unique person—an interesting person. I will find my place at this celebration that is comfortable for us all as long as you’ll try to view the world through my eyes!"

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