this is the "swash" hip/leg brace...
This is an example of the type of ankle and leg braces...he can pick a design.
So we got news about Ryder...first the results of blood work were great...his immune system apparently is kickin' major butt. He since that test has been sick with a cold...and as usual catches a nasty cough with the cold. The cough was getting pretty yucky, so we took him in to the doctor. The doctor gave us an answer...its asthma. He said that he def has asthma. Which explains why he always gets a cough w everything... So we have him on breathing treatments once a day to prevent illness.
Next news is we had a WONDERFUL appointment today with an orthopedic specialist. They gave us great hopes for Ryder. To sum up the long appt...Ryder is getting into leg braces and hip braces..
Ryder's body feels so unstable...when we sit him up (while holding him up) his legs stick straight out, and at time cross over each other ("scissoring")...his brain can only focus on one thing at a time, so all those issues work against each other. SO Barb, the orthotic specialist, is making him braces for his legs and hips. Ryder's "AFO's" (leg braces) will help hold his feet in the correct position...and not constantly pointed downward.
Barb showed us what these devises do in videos of other kiddos she has seen recently. They were JUST like Ryder... then w/in a year, they were walking with braces and a walker. AMAZING!
Children with Cerebral palsy tend to have low self esteems, because they are often looked at by their peers as "babies" or weird...because while other kids are walking running, here is little Ryder on the floor laying down...in one spot...which to a kid, thats a "baby"...eventhough he's older and bigger..and even smarter haha. Our goal is to quickly get him sitting standing, so he can feel more "normal"...and like other kids his age.
We look forward to him getting braces! it's so exciting! I'm sure I'll cry my eyes out to see him walking on his own for the first time! even though it'll be w a walker!
Wednesday, November 25, 2009
this is the "swash" hip/leg brace...
Posted by The Pages at 8:37 PM
Tuesday, November 10, 2009
WOW! It has been a long long time! I am so sorry to those that follow this blog! I guess no news is good news..haha.
Well Ryder is doing great. He still gets sick a lot...but no hospitals! He recently got blood work done to figure out what the heck is going on with his immune system. Shortly we will find out! Doc's orders are for Ryder to stay home pretty much always...unless we are headed out for appointments and such. Doc said NO CHURCH! he thinks thats one place that is the source of illness...and we most def agree! So Ryder and myself stay home and play games, and do preschool stuff. Ryder LOVES preschool stuff...like crafts, letters, numbers...etc. He could sit at his little desk and color, and do crafts ALL day if I let him. We have a little desk that he sits at by the front window. He sits and watches the planes fly over, and cars drive by...while he is coloring...its so cute to watch. He's one smart kiddo.
Ryder now repeats EVERYTHING...so we have to be careful. Ryders favorite words now are....air"pain" (airplane), Guy-tar (guitar), "I know"...he says I know with a sassy tone...its sooooo funny. He will tell you "no, no, no, no" sassy but adorable to...while wiggling his finger at you....geez he really says anything though...but those are his fav things.
Ryder is now 34 inches long, and 27 lbs...wearing 2 T, and growing into some 3T! long long kid!
Ryder had his cousin Maggie visit last week...she is like 5 months old...and learned to roll over while here. Ryder watched her constantly...and now he kind of has figured rolling out...but I think he favors his scooting on back...he feels comfortable with that. We are trying to encourage the rolling and scooting on belly....but he is one stubborn kid! Let me tell you....he is SOOOO stubborn! but then again thats whats kept him alive since day one.
His wonderful therapists get to see first hand how stubborn he can be. Today he threw a complete fit with Linda....totally workin' it! could turn the tears off and on in 2 seconds! One thing I was told early on was Special Needs kiddos TOTALLY learn to manipulate the parents...and man Ryder has us wrapped around his finger...and we cant help it. Ryder is pretty pro at it though...with his cute smile.
As for Greg and myself...we are doing great. Greg is busy at work...and loves it! He is signing up for classes this week. Probably going for business degree. Greg recently made a demo song...and I have to say it pretty much kicks butt. He is so talented with the guitar. Him and his cousin Gary are starting a band called Death Jackson...I think it is a just for laughs kinda deal...but DAng its still good music!!....haha. Him and Gary are really good musicians though....so it'll be funstuff.
I am still the same ol' story haha...home, or at appointments with Ryder...like all the time! My visiting teacher asked when she could come see me...I told her well my schedule is pretty crazy...so I wrote out my schedule and she was like "wow you were serious, you are busy!" But every therapy and DR appt is needed for Ryder...so Im cool with it. Whatever it takes to help Ryder improve!
Well thats us! sorry again it took a long time to post!
Posted by The Pages at 2:51 PM
Saturday, September 5, 2009
dsrgfrfvc fd xy cfuvhhhhhhhhhhhhhh nnn oli;l nm
ryder wanted to leave a note for you all.... mj v byfgubghghhhgb jm 6yhhhhhhtttttttttt
Posted by The Pages at 9:38 PM
Hey Hey...you all. It has been a few weeks. Life here has been busy as usual with Ryder and therapies. He is doing great. He has started scooting around everywhere....on his back. He pushes off with his legs...and away he goes! I love being in the bathroom doing my hair...and then...WHOA! there's Ryder laughing away at my feet. We are so happy that he has figured out how to move around! Now we actually have to make sure that all small things are up off the ground, and that the outlets are covered. What a kid!
So a new word...."disgusting" or as he says it.."g-is-ust-ing" haha. Oh and he enjoys prayers! he thinks when we close our eyes its funny....and he'll repeat random words in the prayer..then say "Ch-Ist- men" AKA "Christ-amen".
This kid thinks he's reading everything! Wear a shirt with words...he points and pretends to read it. The other day we were at my mom's and he was "reading" a side of a box. Billboards...street signs...he'll read. Hilarious.
Another new thing is everything to him flys and says "vrooooooooom"....even his binkie.
So health update on Ryder....
We got results from his blood work on weds....his immune system is low....the next day....he was sick already. He is pretty sick with the croop/ cold...and thrush. He's on 6 medicines at the moment. FUN FUN! Getting breathing treatments several times a day...which he hates!
So October 1st we are moving into a house. The house is about 4 houses down from my parents. We are very excited and relieved to move there! We live in a fairly small apartment and are running out of space with all of Ryder's medical stuff! So it is time to get out!
The house will be great! It's a 4 bedroom 3 bath house...with a huge backyard! and trees. We are very grateful to the wonderful lady renting it to us....she is very kind! Thanks Donetta! It's funny cuz I grew up with this woman and her children...and now I am renting thier house. Crazy.
It will be soooooo nice being closer to my mom & dad. My mom is Ryder's respite worker. She helps us out so much. We have def been thru a lot with Ryder's condition...and my parents have been there for us through it all. We are so grateful! They really are great! We do not know what we would do with out them! (side note....Greg's parents are amazing to! and we know they would do just as much if they were near!)
They were there waiting in the hospital during his birth...were there during the NICU...there thru many of our tears...and here whenever we need them! Thanks mom and dad....hope you can handle us being your neighbors!
Posted by The Pages at 9:12 PM
Wednesday, August 19, 2009
It's been a while since I posted something fun about our lil' guy...so this post is going to be about things he's done lately...
What Ryder has been up to these days...
So Ryder got a new Speech Therapist...and she is a bunch of fun! He loves her already! Her first visit she evaluated him...to find out what to do with him...She told me at his age (19 months) he should be at about 15-20 words. I was like really? hmmm...cuz he says more then 20! so that night I added up all his regular words...and came up with almost 50!!!! Those do not count the ones he'll repeat...they are ones he says daily on his own. So he is one brilliant kid!!! here are some things he says...and phrases
"dog"----"duck,quack"---"go in car"----"going in car"---"Kira!"--"Greg!"---"greg, come"---"buddy come here"---"moon!!"---"Bike!"---"gu-gu-tar" (guitar)----"Bruno"---"eat"---"eeeew, stinky!" ----"go-gma" ---"play"----"owie" ----"A, E, O, I" (his version of ABC's)---"eieioooooo"---"OH YEAH!"---"hey Kid!"----"hey you"---- "yes"---
AND MANY MANY MORE!!!!!!
This kid is a talking machine...it's so fun! The crazy thing is, is technically we are still supposed to correct his age, since he was born so 3 1/2 months early... so really right now we are supposed to consider him 16 months old....so all these words!!!!!!!! WOW!!!!!!!!!!! AMAZING! MIRACLE!
So a recent story about him and his intelligence....
Greg and Ryder and I were at my parents helping Aaron fix his car. It was dark out...so Ryder sat in his wheelchair staring at the sky. He loves doing this! He watches the stars, and airplanes fly overhead...and he ALWAYS points out the moon and says "moon, moon."
Well that night Ryder noticed this really big-bright star. He knew it was different then normal. He pointed at it and said to me, "huh? huh?"
I said, "oh Ryder that is a planet."
he said "huh?"
I saw that he obviously was curious about this "planet"
So I said to Aaron and Greg "hey what planet is that?"
Aaron said "I think its Saturn???"
So I told Ryder "Hey that's Saturn ryder, it's the moons brother, we live on earth the moons sister, and the Sun is the moons sister to."
About a half hour later Greg comes over and says "ryder where's saturn?"
Ryder looks directly at saturn and says "ss-urn" and points.
We were sooo shocked! he remembered! so we said Oh RY you are our NASA genius!!!
So then three days later or so...we got home one night...at our house...not my mom's where we showed him Saturn ( if it was saturn may be venus) a few days previously.
Greg says "Ryder where is Saturn?"
Ryder looks, searches, and finds that bright star and points at it...
Then we ask "Ryder where are the stars?"
he looks all around and points and moves around finger...meaning everywhere!
He always shows us the moon to...
So dang! how smart!!!!
We have been teaching Ryder his ABC's lately. He loves them! So one day he was playing in his room with toys and books...
I peeked in to check on him...
he had a book opened and was pointing at the letters saying "A-E-O-I_H"
He totally thought he was reading! haha...I was so proud of him, and he knew it!
Today he told my nephew Zakry "I Love ooo"
This kid is always doing the coolest things! That seriously make us sooooo proud!
Ya know this kid may have his struggles physically, but mentally NOT at all! And that makes us soooo happy! It makes it easier on us...takes away from us focusing on his physical disabilities...and getting down about that.
Dang Ryder is soooo cool!!!
Posted by The Pages at 7:37 PM
Friday, August 7, 2009
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Posted by The Pages at 6:39 PM
Wednesday, August 5, 2009
So what's our latest craziness happening in our life??? well, well, well.....oh where do we begin???
Since our post forever ago...we came back from Idaho...life was normal for us for a bit...then one night I (Kira) cut my heel to the bone...barely missing major tendons...and whatnot... in the end I got 8 stitches. How did this happen?? Well I made my lil' Ryder a cute vintage cowboy curtain to go with his room...and I was putting up the hooks for the rod...and stepped off the stool directly onto the curved part of the Rod....slicing it to the bone. It was crazy cuz Greg had just left for an hour with out the cell phone...Thank goodness for great neighbors! Lorenza and her family came to my rescue...and cared for Ryder.
This past week Ryder has been and still is in the hospital. Why?? well...We went to my grandparents cabin in forest lakes Az...were having a great time...then Saturday Ryder got fussy....and a fever. I thought, "oh it's just his molars (sp?) coming in....well his temp sunday morning was at 101 ish... so we headed home early to go to urgent care. By the time we got there his temp was at 104 plus....so they said ok with Ryders "lovely" history he needs to head straight to the ER now. So away to Phoenix Childrens we went!
They have done many tests...and have come up with nothing...except its a virus. Motrin took the fever down to 101 ish til yesterday. Now he's back to normal on his temp...thanks to IV and fluids. Of course Ryder got dehyrated quickly....he does that no matter what when he is ill. Ryder is getting some tests tomorrow from a team of GI dr's ( intestinal drs...and such). While he has been in the hospital they found non related stuff to his virus....but they found he has some stuff wrong with his intestins...from an infection he had called "NEC" in the NICU. So tomorrow he gets some fun xrays..and tests. Hopefully after that he can come home but who knows...they said they are taking all precautions with him cuz of his crazy history...so we shall see.
NOW AS FOR MORE GOING ON....GEEZ...um to begin...the other night our van kinda broke right when Greg pulled into the hospital, so we were borrowing my mothers blazer. Well lets just say the blazer is no more....and I'm in major pain.
I was driving home yesterday to get a break from the hospital...and was in rush hour traffic..at a dead stop....all the sudden someone going 55 MPH plus...rammed right into the back of me. It actually hit so hard she went under me and pushed me into the HOV lane with cars coming right at me...fortunately God was def watching over me...cuz the cars missed Tboning me...and also I easily could've been thrown into oncoming traffic on the opposite side of freeway. So Yes I am in TOTAL pain...but I won't take much meds cuz I need to care for Ryder.
So thats our crazy crazy life. I just hope Ryder gets well soon and gets home.
Posted by The Pages at 10:38 PM
Tuesday, June 23, 2009
You gotta love it, when you are out of state...and your child gets sick!! But I'm not surprised with our lil' guy. He has had an awful cold the past week...and just as he's getting over it, his ear acts up!!! EEEEEK!
Last night he screamed for about 4 hours straight. I knew it was just his right ear ( the usual ) So I tried soothing him, but nothing worked. Greg of course is still in Arizona, so it was rough. I didn't want to wake up the Page's, so I stood in the front room bouncing Ryder in my arms. Soon his ear started leaking fluid, and his crying slowly stopped. I was happy for that, but knew his ear infection had just began!
Today it's leaking blood. Nasty....but at least his tubes are working!!!
I came prepared for it all though! I brought every sort of medication I have for the kid...and so far I've needed them all!!! even the breathing treatments/steroids for his congestion.
I'm hoping tonight is not a repeat of last night! The Dr said his ear drops should work within 24 hrs to 3 days...IT BETTER!!! haha.
Greg I can't wait for you to get here!!!! haha. We miss you so much!!!
Posted by The Pages at 6:55 PM
Thursday, June 18, 2009
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Posted by The Pages at 11:28 AM
Shiloh you are AmAzInG!!! you did such a beautiful job on Ryder's photos! ThAnK YoU soooo much!!! We LOVE them! everyone check out her blog!!! she's soooooo good! smckinnonphotograpghy.blogspot.com
Here's some of the pics!
Posted by The Pages at 11:24 AM
Posted by The Pages at 11:20 AM
Monday, June 8, 2009
So Ryder got his first "real" pictures....they are adorable! Our friend Shiloh took them, and did a wonderful job! until I get the disk....check out his pics at smckinnonphotography.blogspot.com
Ryder and I made it up to Idaho...We stopped and met my niece and Ryder's cousin....Maggie. What a doll! She's adorable! chunky babies are the best! Springville is beautiful. I love Utah and it's beauty....but I'm not to sure if I could live there.
Greg's mom picked us up today in Springville and drove us up here to Dayton Idaho....we are here for 3 weeks! Ryder gets to spend time with his granny Rosaline, and Grandpa Brett, and of course his Aunt Caralee....and many others!!!!!(yes you to Sarah G!!!)
Thanks Shiloh for the pictures! Greg gave your link to co-workers they all want you to take pics of them! haha.
Posted by The Pages at 10:32 PM
Saturday, May 30, 2009
Posted by The Pages at 11:50 PM
so the other day Ryder was in our living room playing with toys...a regular thing for him....he usually can only move within a 2 foot area...he moves by kicking his cute little legs....he kicks and kicks and slowly scoots his butt around the floor....
anyways Ryder was in the middle of the floor, and started kicking...and moving...kicking and moving....he reached our couch....he realized this was pretty dang cool.....so he kept doing it.....next thing he knew he was like 10 feet away from where he started...then cleared the hallway corner....and scooted all the way to his own room. It was so cool!!!
while scooting Greg and I were cheering him on....saying, "Ryder you did it! you did it!"
Ryder kept yelling SO loud, "I DID IT!! I DID IT!"
It was simply adorable.
It was not til later, because we were so excited...we realized that it was pretty advanced for him to change the you to I....(you did it to, I did it)
I had to ask his speech pathologist if this was expected from a 17 month old....she said oh no....if anything they'd say "me did it".
So we are so proud! He's always saying such cute things....like...I love you, Good boy, Eat ( he yells it while he's eating cuz he's so excited) My brother Robert he calls "berr" hilarious...he even says excuse me when he burps....(in his own language haha, but we understand it) He's so good.
anyways here's the pics.....
Posted by The Pages at 11:30 PM
Posted by The Pages at 11:25 PM