Ellie had her 1st CDC visit, which is the developmental clinic at Childrens we go to. 5hrs and 11 different people we saw! What a long day. I expected for them to say the brain MRI maybe or maybe not showed some damage but that everything was really status quo and continue as we were and return for our followup to check progress.
Reality of what I heard was Ellie's spinal cord could possibly be tethered (tangled) and be causing her lower extremity issues! They scheduled us for yet another MRI, #3 total, this next week to check the spine and cord, if it does show it is tangled then we will proceed with surgery to free it. The neurologist tells us we should hope that this is the cause because he can fix it. If it is not there is nothing he can do for her but just help us through the process of things to maintain the best quality of life for her that we can!
Sometimes people say I don't know how you do it all the appts, therapy ect.... well someone has too! But I was blind cited by this appt! Excuse me Dr that I have trouble being excited my baby might need spinal surgery! Mommy blinders, like horse blinders, keep us focused forward and where we are going in the now and here and deter us from the "what ifs" surrounding us, but it also hides the bus that is about to run you over!
Friday, October 12, 2012
Wednesday, September 19, 2012
"Mommy"
Hope is finally insight. We have gotten a second opinion that says lets try ear tubes! After failing so many hearing tests finally someone who is going to try something to help Ellie progress! May work and may not. Can't hurt to try and then restest,,, if she still fails so be it and we can go from there!
With that, someone said "how great would it be for her to hear and learn to talk and for you to hear her say Mommy"..... I am so good at wearing my blinders to get through the day that I had never stopped to think, Ellie has never called me "Mommy"!
We shelter ourselves from these facts and do not let ourselves even realize what is or is not happening to protect us from the fear of the unknown and what the future holds,,, like I may never hear Ellie call me "Mommy".
With that, someone said "how great would it be for her to hear and learn to talk and for you to hear her say Mommy"..... I am so good at wearing my blinders to get through the day that I had never stopped to think, Ellie has never called me "Mommy"!
We shelter ourselves from these facts and do not let ourselves even realize what is or is not happening to protect us from the fear of the unknown and what the future holds,,, like I may never hear Ellie call me "Mommy".
Monday, August 13, 2012
Aug '12 update
Therapy is still progressing. Ellie had a goal to initiate 10 activities herself. Bring us games to play without us telling her to, initiating she is hungry though signing ect, she has almost matered this goal! We have also almost met our first speech therapy goal of her signing back 10 signs! To us it seems like it is taking forever but therapy is so happy with her progress! We go to the ortho doctor later this week and are hoping for our braces within the next couple of weeks. With those she might have a walker as well, so we hope to get some professional decor advice from Julie for our new gear!
I had a phone call this last week about Ellie's hearing. She does have confirmed mild hearing loss in the L ear that we were told she might need a hearing aid for. We are now told with the R ear being normal that the mild loss is not enough that she would greatly benefit from a hearing aid so we wait and retest in Sept!
Aug 29th Ellie goes for an MRI of her brain to look for the brain damage to know what we are up against! Great to know but scary as they have to put her under general anesthesia for this,,, not a fan of this! Please remember us on this day and pray for knowledgable attentive staff to keep her safe during her anesthesia!
And I have to include Alex as well. He starts preschool 5 days a week Sept 4th, he is super excited and loves his school! He is so helpful with Ellie and a great big brother!
I had a phone call this last week about Ellie's hearing. She does have confirmed mild hearing loss in the L ear that we were told she might need a hearing aid for. We are now told with the R ear being normal that the mild loss is not enough that she would greatly benefit from a hearing aid so we wait and retest in Sept!
Aug 29th Ellie goes for an MRI of her brain to look for the brain damage to know what we are up against! Great to know but scary as they have to put her under general anesthesia for this,,, not a fan of this! Please remember us on this day and pray for knowledgable attentive staff to keep her safe during her anesthesia!
And I have to include Alex as well. He starts preschool 5 days a week Sept 4th, he is super excited and loves his school! He is so helpful with Ellie and a great big brother!
Signs!
Ellie is doing great with signs. We forget to do it to her so we all struggle with this but we are all learning. Ellie can hear and will follow commands but she can not verbally communicate back so this is why it is so important for us all to use sign when talking with her.
I do not have a prefered link yet and eventually will post the picture of each sign as Ellie learns them but for now here is a list of signs Ellie does:
please, more, milk, eat/food, drink, goodnite, baby, dog, thank you, book, stop, no, up, play, site, music, mom, and dad, wash, and diaper. We also do help but this is modified for her as the other is too hard... for help you just take your hands and pat just under your collarbone a couple times. right hand pat right side Left on left.
I do not have a prefered link yet and eventually will post the picture of each sign as Ellie learns them but for now here is a list of signs Ellie does:
please, more, milk, eat/food, drink, goodnite, baby, dog, thank you, book, stop, no, up, play, site, music, mom, and dad, wash, and diaper. We also do help but this is modified for her as the other is too hard... for help you just take your hands and pat just under your collarbone a couple times. right hand pat right side Left on left.
Accepting Independance
One obsticle that clearly bothers mom more than Ellie is going places and her wanting down but unable to walk. Will people step on her, what will she get into, will she scratch up her legs, ruin her clothes and shoes from dragging them, and if she gets herself somewhere I do not see her go can she tell someone when she needs help!
Ellie screams and cries when she sees other kids and brother Alex down running around and playing while she is in her buggy. She does not care that they are running and standing while she crawls, she just wants to go anyway. She also must have no pain receptors, she will crawl on dried out grass, cement, and wood decks that leave splinters, grass sratches, and scrape her legs,,, oh yeah and wholes in the toes of her shoes! Of course I am reluctant to let her down to crawl unless it is indoors but that is not fair either.
As always Ellie does fine. We had a picnic this weekend, outside.... the worst place for her to be down,,,, and she did so well. It was the first time I just let her go outside without restrictions. I was so proud of her! Great job Ellie.
Thanks Chris and Karissa
Ellie screams and cries when she sees other kids and brother Alex down running around and playing while she is in her buggy. She does not care that they are running and standing while she crawls, she just wants to go anyway. She also must have no pain receptors, she will crawl on dried out grass, cement, and wood decks that leave splinters, grass sratches, and scrape her legs,,, oh yeah and wholes in the toes of her shoes! Of course I am reluctant to let her down to crawl unless it is indoors but that is not fair either.
As always Ellie does fine. We had a picnic this weekend, outside.... the worst place for her to be down,,,, and she did so well. It was the first time I just let her go outside without restrictions. I was so proud of her! Great job Ellie.
Thanks Chris and Karissa
Thursday, July 26, 2012
Bill of Rights for Parents with Special needs Children
One more thing I wanted to post from Love That Max. I can not even say how this is 100% true and when people keep telling you it is OK and makes you feel silly I find comfort in knowing I am normal! Thank you Love That Max!
We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Authored by Love That Max
We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Authored by Love That Max
My child with CP
I have found some comfort in a blog about a 6 yr old boy with CP and his mother wrote a poem for him on their blog (love that max);
My child with cerebral palsy is not the same as another child with cerebral palsy; the condition isn't one size fits all. There are various types. Even within the same type, it affects every kid (and adult) differently.
My child with cerebral palsy is not defined by her disability. She is a cheerful, outgoing, spaghetti-eating kid who happens to have CP. She is not A Kid With CP. Please do not refer to her that way (although daddy like to refer to her as "Mrs Magoo").
My child with cerebral palsy is not someone to be pitied. That should be reserved for children who truly exist in sad circumstances.
My child with cerebral palsy is not hard of hearing. When you talk about her as if she is not there, hello, she can hear you.
My child with cerebral palsy is not meant to be ignored at the playground, at the gym, or anywhere else physicality rules. She may move more slowly than other kids but she is just as gung-ho to have fun. Include her.
My child with cerebral palsy is not a "cutie pie." She is not "so sweet." She is not necessarily any of those belittling words well-meaning people use to describe children with special needs. She is "smart." She is "funny." She is any personality trait any kid can have. And yes "she looks normal"!
My child with cerebral palsy is not someone to be openly gawked at. So what if she drools; your child eats his boogers. Kids have their quirks. (You may, however feel free to gawk at her gorgeous mom!)
My child with cerebral palsy does not have something catchy, although from the way some parents hover nervously when their child is around her, you might very well think she does.
My child with cerebral palsy is not someone or something I "have to live with." She brings me joy that may not be possible to understand...unless you have a child with cerebral palsy.
Authored by Love That Max blog.
My child with cerebral palsy is not the same as another child with cerebral palsy; the condition isn't one size fits all. There are various types. Even within the same type, it affects every kid (and adult) differently.
My child with cerebral palsy is not defined by her disability. She is a cheerful, outgoing, spaghetti-eating kid who happens to have CP. She is not A Kid With CP. Please do not refer to her that way (although daddy like to refer to her as "Mrs Magoo").
My child with cerebral palsy is not someone to be pitied. That should be reserved for children who truly exist in sad circumstances.
My child with cerebral palsy is not an angel just because she has a disability. She can be naughty and bratty and everything any typical kid can be. Just ask her bother.
My child with cerebral palsy is not someone I go the extra mile for because I am an angel. She is my child. You do what you can do to help your children succeed in life.
My child with cerebral palsy is not hard of hearing. When you talk about her as if she is not there, hello, she can hear you.
My child with cerebral palsy is not meant to be ignored at the playground, at the gym, or anywhere else physicality rules. She may move more slowly than other kids but she is just as gung-ho to have fun. Include her.
My child with cerebral palsy is not a "cutie pie." She is not "so sweet." She is not necessarily any of those belittling words well-meaning people use to describe children with special needs. She is "smart." She is "funny." She is any personality trait any kid can have. And yes "she looks normal"!
My child with cerebral palsy is not someone to be openly gawked at. So what if she drools; your child eats his boogers. Kids have their quirks. (You may, however feel free to gawk at her gorgeous mom!)
My child with cerebral palsy does not have something catchy, although from the way some parents hover nervously when their child is around her, you might very well think she does.
My child with cerebral palsy is not someone or something I "have to live with." She brings me joy that may not be possible to understand...unless you have a child with cerebral palsy.
Authored by Love That Max blog.
A day in the life of Ellie
Ellie starts each day with a series of stretches to get her legs going for the day. She is super strong and gives me a workout just holding her down to stretch her! Often it ends up with me holding her down with my legs and stretching her. Thank you "Super Why" for distraction! On Dr days Ellie and I head out with multiple bags... food/drink bag.... diapers.... blanky, baby, binky... and toys to keep us entertained! After 4 hours at just 1 Dr we head home for our daily nap! Dr days are often paired with different testing or retesting (8 hearing tests! really! and 1 more in Sept,,, after 8 can they not tell if she can hear!). Between weekly Dr appts we have 6 therapy treatments a month. We have been blessed with such a good group of Dr's and therapists, everyone is so nice.
Ellie is very much the bully between her and Alex. Between therapy, Dr's, and multiple streching session throughout the day she pulls Alex's hair, pinches, and bites,,,, and smiles and laughs the whole time. Ellie loves her babies, reading books, and playing with legos! Ellie is always full of smiles and loves each of her Dr's and therapist. They have quickly become such a good support system for us. The highlight of our day is when we here the door knob turn, if crawling was an Olympic sport Ellie would win hands down, and there's dad. The good guy who doesn't torture Ellie with streching and prodding from Dr's all day! and saves mom's patience!
We have a blog!
This is the 1st posting to many we will have. Now that I started this site I find it hard to write in words the same thing we have had to explain so many times over the last few weeks.... Ellie has Cerebral Palsy.
Some of you reading are close friends and family, others might not know much about Ellie's adventure so far. And adventure it has been. One simple call for development delays, we assumed related to prematurity, has turned into a whirlwind of emotions and craziness!
First what is cerebral palsy?
Cerebral palsy (CP) is permanent brain damage. It will not get worse and will not improve. There is no cure. CP is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities (kids health.org).
Cerebral Palsy is what John is also diagnosed with and no Ellie did not get it from him. They have told us that it is not proven to be hereditary at this point. Just coincidence!
So what are Ellie's symptoms?
Ellie's CP mostly effects her legs. She does have tightness in her calf's and hips causing her toes to point downward most of the time which prevents her from being able to balance on her feet as she is unable to put her heel down. This is why Ellie can not walk without help, as she can not balance on just her tippy toes.
Ellie does NOT have any comprehensible words yest, except the occasional "dada". This is still not 100% known to us if this is from the CP or maybe related to a mild hearing loss she has in the left ear. We have been told it is most likely the CP but we are holding out some hope that maybe it could be as easy as hearing!
Ellie is very smart and seems to be doing cognitively well. She is slightly behind in social skills but was also a preemie so that we are working on. Currently they are not worried about her mental development just physical. However until Ellie keeps developing we will not know the extent to what she is capable of.
Whats is in our future?
We have physical and speech therapy plus we also have a teacher that helps us with social skills and interactions and how to adjust our normal routine to a way Ellie can participate. We are working on sign language so Ellie can communicate with us instead of just screaming at mom and dad when she wants or needs something. She has been doing so well and is picking up the signs well. I will post what signs we are working on and pictures for followers to learn as well. Our speech therapist has told us it might be a few years if that before Ellie may learn to verbalize to us. So we are encourage all family and friends to follow and learn with us and Ellie. There has been talk of Ellie needing a hearing aid but at this point we are retesting AGAIN in September. Ellie does need leg braces to get her walking which we will hopefully get at the end of next month. And we also go for an MRI of the brain next month as well. Besides therapist Ellie has a Neurologist, Orthopedist, a pediatric ear Dr, a pediatric eye Dr, and a development delay specialty Dr. So many to keep tract of!
And I have to tell everyone.... John named our blog!
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