NonChristmas, Christmas letter update, back to blogging!

Among many other quests I vowed to undertake this year, getting back to writing is one of them. Not so much about Ellie but the family as her journey is also ours, And to include more pictures and videos. So here is my nonChristmas letter Christmas letter update!


Ellie:


Ellie is now 3 1/2 yrs old, 1 1/2yrs post spine surgery. She is doing so fantastic, biased opinion of course! Still with braces to help her walk but without any assistive devices. Fearless and determined she has taken into running, well the best her little legs can run! I cringe and sometimes half close one eye as if that will help when she majorly buffs it! I now understand why during high school basketball my mom sat with her eyes covered a lot! 5'6'' is not a tall post by the way I had to fight those bigger girls!


Ellie started private speech, physical, and occupation therapy weekly in Omaha. She has been going for about 6 months now and we can definitely tell a difference. I can not say enough about the help we have received along the way just to advocate and send us in the right direction to get Ellie the BEST care and help possible. We are currently waiting for a Talking tool where Ellie can use a medical tablet for speak for her. I am so glad she is smart because she will have to teach me how to use it. She buzzes right through like a wiz! We did lose our favorite speech teacher so far Melissa, wishing her the best in her new adventure but will greatly miss her.


Ellie lost a her hearing again a couple months ago and had to have a different type of tube placed in her ears. After 2 yrs, 12-15 hearing tests, 2 ear surgeries, and 3 ENT doctors this Dr finally explained the connection to the inner ear and her cerebral palsy,,, who would have thought! She is back to hearing normally and breaking her glasses on a weekly basis!


Besides all of Ellie's medical needs she is loving preschool and all her school friends! And will go on her first field trip in a couple weeks. She just wants to ride the bus! Ellie has joined yoga! She thinks she is hot stuff but it double duties for therapy and for fun so it works!


ALEX:


Alex has been diagnosed in the last yr with a rare eye condition, which apparently he was born with. His R eye does not process what it sees and overtime the nerves stop growing and will die off leaving him blind in that eye! So he has glasses with a script for that eye to make the objects clear and then he is supposed to patch the good eye in order to force the bad eye to work. The hope will be to regain the nerves as he grows and return to some normal function. Have you ever looked for cool eye patches?! Well they do not exist and the ones that are COOL are not as effective,,, creativity at its best rendered some AWESOME patches, you really can use duct tape for anything! :)


Alex is in kindergarten and loves it. I try to volunteer in the class as much as I can between Ellie and working. Soccer season is also upon us. Coach is strict, I love it, not sure Alex does!


Many days if I am not already crazy I think I must be toting these 2 around everyday to all their stuff! Oh yeah and we still have John!


John still works for Yahoo and was recently promoted to a Senior Ad Operations Specialist. He tries to follow the kids and I crazy schedule and keep up but someone has to work outside the home to keep Ellie accustomed to her newest hobby,,,, SHOPPING! I still work for my company in Las Vegas and occasionally take call at the hospital.


And who can forget Monk-A-Daisy, the golden doodle dog, and Garfield the cat!

8 ways to include kids with special needs in sports and other activities

8 ways to include kids with special needs in sports and other activities

Therapy

Therapy means well and we love them,,, but do these people realize we have to work to pay for all Ellie's needs!

Teach yourself sign language so you can teach Ellie, make laminated books of real life pictures she will recognize, build Ellie a special coat rack to hang her coat herself, take Ellie to library activities to promote signing and socialization, do her daily stretches multiple times a day and log them on a log sheet,,, OH yeah and make it to all the Dr appts, tests, and therapy appts for 3 different therapist each having sessions 2x a month! Not to mention Alex!

Speech therapy is going,,, not well, not bad just going! Not to throw John under the bus and he will probably not read this so Oh well, but he messes up sign language on a daily basis. Ellie's wall of therapy sheets and signs in her room and then on the fridge are apparently not enough. Not to mention the multiples signing books we now have! Posters and flashcards! Good thing Ellie loves books. Counting Ellie is up to about 20-30 signs she can do and another 20 she understands and obeys. We go NO where without our signing book.

Speech wants us to use signing more in daily speech while talking so Ellie can better understand the meaning of the signs and there context so we are going to be much more diligent about posting signs on here so everyone can keep up with Ellie. So far the best online resource for looking up signs I have found is http://www.signingsavvy.com/.

Therapy has requested more outings to places and events to involve Ellie so for the last few weeks we have been going to story time and the library 2x a week. Exhausting for mommy! But Ellie loves it. She now knows the way there and will scream louder as we get closer and closer! Today she had to hug the teachers goodbye! It is amazing how well she does responding to signs out in public, sometimes due to her developmental delays it is hard to remember how old she really is! She has really shown us over the last 3 weeks what a big girl she is becoming! And Independent!! And apparently stylish!

Jan 16th Surgery Day!

At first I really thought I could totally do this blog thing, how easy does this seem! I have no time! I think about it a lot and then going to bed just seems so much better!
So back on the blog wagon!

Short condensed version of what has been happening with Ellie.

Ellie was diagnosed with a Tethered spinal Cord (http://www.childrenshospital.org/az/Site1705/mainpageS1705P0.html). January 16th we were off to Children's for surgery. Of course Ellie loved everyone as usual! This was dad's first real major appointment he went to. He had never seen Ellie sedated or had to watch her walk away with hospital staff only hoping and praying  that she would come back just the way she left. John was more upset I think that she willingly left his arms into the arms of the nurses without even a tear. A tear from Ellie that is ;)! We called her the mayor while we were there. On her way to surgery she had to look in every door and see what everyone was doing, after surgery she had to walk to each hospital room by hers and look inside the room to see who was there and what they were doing!

Before surgery in her fave play room!

















A few hours passed and of course all went well, we did receive pictures from during surgery but I will not post those! John has not even looked at them, not for a weak stomach! John's mom Bobbi came to keep use company and took us to lunch in the cafe during surgery! In the waiting room we talk to the Dr and he says how great it went, that his son in fact had the same diagnosis and treatment! Somewhat comforting. Then the bombshell! Bed rest for Ellie,,, I expected the answer to my question of  "how long" to be a few hours,,,, He replies 2 DAYS!!! One would think this would be something he tell us in our pre operative appt! Unsedated we had to keep Ellie flat in bed for 2 DAYS! Oh man! Needless to say mom and dad were on bed rest for 2 days as well! Working in the intensive care myself I am not afraid to drug people! When they said they had Valium and Morphine for Ellie I welcomed the side effects of sleepiness! Bed rest was much more tolerable due to the wonderful BAG of cookies we received from cousins Maggie and Gracie!

Today is the day,, Ellie was so excited to sit up in bed to eat breakfast and eager to get out of bed until she realized how much it hurt. I knew it was going to hurt her but we all underestimated how much! After sometime walker in hand she was off! Therapy placed stickers along the handrail and Ellie was off collecting stickers! After she was up and going forget sitting back down!

3 days passed and we were on our way home. Corset intact to keep our incision from coming open we're off. It took some time but finally 8 weeks post op things are finally healing well. Ellie's incision is healed and she is walking without her walker. She can walk 20-30 feet unassisted with her braces on! No hands, walls, or walker... that's about the distance when she thinks she is tough stuff and gets going to fast and loses her balance! People often run to her when she biffs but Ellie is going to be a professional stunt girl when she grows up! The girl knows how to fall!

Physical wise Ellie can now stand up on her own using items around her like chairs or the wall. She occasionally can kneel down for a toy and stand back up without hanging on but that trick is tough! Ellie's legs have loosened up but she still requires braces for her feet/legs to be able to balance well enough to walk longer distances. We do let her have breaks and go brace free on certain days,,, on these days she is able to walk without braces, shorter distances, she is getting there. This fall we hope to put her in dance classes!

Mommy blinders

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!

"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".

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!

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.

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

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

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 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!