Ok I have not posted updates on Ryder in a bit, so sorry.
This week was a week everyone of Ryder's DR's and therapists have been waiting on! He had a Modified Barium swallow study....to all the non-medical people....The "mbs" is a test that tells whats going on with the swallow. They needed to see if Ryder was asperating.
So Thursday my mom, Ryder, and I headed down to PCH. Great place I must say! WE LOVE PHOENIX CHILDREN'S!! Anyways The test is really cool. They give him every consistency possible of this stuff that shows on an x-ray. The x-ray isnt still shots though. Its an x-ray that you can watch his swallow, and everything really. We watched him swallow....and at this "moment in time" as the Dr put it, Ryder didnt asperate, but each swallow was as close as you can possibly get without asperating. It went right to his airway...then last second went down the correct one. So they are positive he asperates time to time. So we have to thicken every liquid.
Also they diagnosed him with a swallowing disorder....typical with CP kiddos....his suck is SO weak....and When he drinks, the fluid goes up into his nose as well. Which explains why my child ALWAYS sounds stuffy. Poor guy. But agh, he doesn't care or know so we'll let him go on being happy for a bit, then when Dr. Mancuso schedules a surgery....then Ryder will know.
Dr Mancuso will fix his genetic issue with his upper gum, un tongue tie Ryder, Fix the passage to his nasal passage way, and maybe throw tubes in his ears.
The other recent news is Ryder had another DR appt with Dr. Sweetman. She confirmed again that Ryder has 2 forms of CP, one on top one below. Like before, to floppy & weak above, and to stiff on the legs. The medicine to loosen his legs a little, will only cause more trouble in his upper body, so they can only do one thing at this point. BOTOX! they are going to begin botox shots on his body every 3 months. What does Botox do besides making Joan River look like a freak? ? It actually helps out people like Ryder with Cerebral Palsy. It loosens his tight tone for about 3 months at a time. In that time it allows him to get to know his body and what it should do. So we wish him well with that!!
They later will go into his tendons in his ankles and cut them. Detach them. That helps CP kids as well.
She also told us again she won't give Ryder a prognosis for the long run. Because she believes these kids are tough and miracles can happen. But she will say if Ryder stays the way he is...tight below, floppy & weak above, he will be in a wheelchair for his life. But with agressive therapies, that can change. She also said Ryder is NOT mentally retarded. He is very smart, and alert! YAY!!!!
Right now the only thing in Ryders body that is "semi-normal" is his left hand....he uses that for EVERYTHING! we are trying to remind him he has a wonderful right side to!
We are grateful for Ryder. He is a miracle. And such an amazing little spirit we love so much!
Saturday, December 13, 2008
Ok I have not posted updates on Ryder in a bit, so sorry.
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Saturday, December 6, 2008
Sadly baby Miles passed away. He only lived 50 hours. Please keep Mark and Ashley in your prayers. Thanks.
Posted by The Pages at 2:15 PM
Wednesday, December 3, 2008
ok everyone, I know prayers are a beautiful thing....and really help out these little preemies. Another dear friend of mine gave birth to a 26 weeker. It breaks my heart to see these people I love go thru this difficult trial. I grew up with Ashley Dahl and her family. We also did hair together. Her husband Mark and her welcomed Miles into there family 2 lbs 8 oz. He's got a start to life like Ryder. So please pray for him as well as baby Abby! Thanks so much!
Here's her blog http://markandashleyhuston.blogspot.com
I hope its not blocked!
Thanks Kira & Ryder
Posted by The Pages at 5:52 PM
Sorry it's been awhile! We've been busy with Ryder. He was sick for like forever! But knock on wood he is well today. :)
We went to Idaho for Thanksgiving. And oh how we are thankful for that much needed trip! We love Idaho. Ryder got to play with his 3 cousins on the Page side. It was so much fun to see him interact w/ them.
Ryder did so well traveling! On the way home we practiced words w/ Ry and he said "gothoo" (got you!) he said "uhbuh" (bus) and boo for blue and gren for green. It was so cute! We were proud!
My favorite thing he said was to his auntie Sarah...she was playing w/ him and asked Ryder "isn't aunt sara a dork?" Ryder smiled and said "mmm yeah." It was hilarious. This kids a funny kid.
Ryder has started cranial sacral therapy (Sp?) He's responding great to that. He's still booked daily with therapies and Dr appts so we are always on the go! Today Ryder had a chiropractor adjustment. It was alot of poppin'! Dr Crismon was kind to adjust Ryder when Ryder went in w/ daddy get cracked. Ryder liked it! But don't we all!
Sad story here. We know Ryder's delayed and different from other kids his age, due to the Cerebral palsy, and we knew that someday soon people would begin to realize this more in him physically. We thought we were prepared for reactions, but on our way home from Idaho I had a pretty bad experience....
We stopped at Wendy's for some dinner in Kanab and this little 5 year old girl walked up to me and looked at Ryder and said "your baby is lazy." I was so shocked I didnt respond. I actually kind of got teary eyed. When Greg came back I told him what she said. He asked if I told the little girl why Ryder looks so weak and floppy. I told him how shocked and thrown off I was. Also I didn't want to embarass the girls mother, so I didn't say anything. But man, that was a rough moment. I realize I need to be prepared for these things from now on...And that kids can be mean!
On a happier note :) A few weeks ago I was watching tv and flipping thru channels and came onto this thing on ABC nightly news. They spotlighted this guy named DJ Gregory. This guy's story brought Greg and I to complete tears. It's a beautiful story google him... I think I googled abc DJ Gregory, and found the clip....
Anyways this guy is 30 years old. He was born 10 weeks early and had blood on the brain just like Ryder. The Doctors told his parents the same as our Drs told us, that he may never walk. Well Dj was determined to walk and did. Then he wanted to learn to golf, so he did. He taught himself a one handed swing. This past year he went to the PGA tour. Nobody EVER walks hole to hole. But he did. He walked and walked and walked. Fell and fell and fell. Then picked himself up determined to accomplish his goal. And in the end he did it. He believes if you believe in yourself, you can do it. His parents taught him that early on in life with his Cerebral palsy. I can't even say what an AMAZING and inspirational story this is. I encourage you all to google it and watch the clips. This story has given us hope with Ryder and we are going to teach him what DJ Gregorys parents taught him....you can do anything if you put your mind to it, and we'll be behind you every step of the way! we'll be there to pick you up when you fall. It's funny and sad but Dj actually tallied his falls....he made light of it.
I keep saying it but google dj gregory-abc news/ and get ready for an AMAZING story!
Posted by The Pages at 5:14 PM
Thursday, November 13, 2008
oK DoEs RyDeR EvEr CatCh A BrEak!!!???
This kid i'd tell ya!!!! So this ear infection thing was getting him, HA! No he had to go a step way above the ear infection! And scare mommy and daddy to death!!!
This morning I pulled him outta his crib, he was kinda fussy...which is so odd for this guy in the mornings! usually he's happy and talkin' away! But not today, he was arching his back and fuss'n. I notice 2 red dots on his forehead.... I give him loves and simply think agh, just bug bites....poor kid. Well then not 10 minutes later his head is covered in the red dots! Some were ginormous, with wierd surfaces! I'm like great!??? What did this child catch this time!!!???? eeek! And at this point he's pretty mad. So I throw him into the carseat and took him to the Doctors office. By that time his right side is covered. His calf turned white, and was forming wierd pink blotches inside the white large circle. I'm thinking "Ryder! what the heck! you get everything, and dang you know how to scare the freakin crap outta me!"
The Dr takes him back, and was like "oh, wow, he's def reacting to something here." I'm like" yeah something like that!" Ryder had stopped crying and was entertained by the paper on the Dr bed, he thought it was pretty cool, and hilarious. Ryder was covered in hives, even down under ; ( ! (poor kid!)
These hives were outta control! Apparently, eventhough he's taken amoxcillon before, this time his body hates it!
Now he's doped up on benedryl, and off all other meds! Til the hives are gone. Doctor says they'll prob be there til early next week.
I think Ryder made the hives appear so he didn't have to get his synergis (RSV) shot today.
Well I didn't tell him yet, I rescheduled the shot for Monday! Man, this kiddo! gotta love him! And oh, we do!!!
Posted by The Pages at 6:55 PM
Monday, November 10, 2008
Ok, here's Kim's Blog so you can see her lil' bundle of joy! CoNgRaTs KiM & JoN!! She's a cutie!
Keep lil Abby in your prayers still, she can use the faith and prayers.
We know, because we were there just 10 months ago!
Posted by The Pages at 5:59 PM
Sunday, November 9, 2008
Man oh man! so many babies don't wanna cook in the oven long enough!!
My cousin Kim Jones Merrill had baby Abby today....a 25/ 26 weeker at banner desert. weighing just shy of 2 lbs. So far she's doing great. Def a better start then Ryder! But any NICU nurse or Dr would tell you preemie girls are SO much stronger. She's only on 26% oxygen w/ nasal canula. That's incredible! Kim's water pretty much broke thursday...Abby just wanted out like Ryder. They wanted to beat all their buddies to earth first! haha. So keep lil' Abby and Kim and Jon in your prayers. We've been there in their situation and wow do you need the prayers....it's a tough road. Kim is getting a blog so when it's all together I'll give you that link. But I've seen pics and Abby's a beautiful lil' girl.
Posted by The Pages at 4:10 PM
So crazy week for us!! Ryder finally had his mouth DR appt....and what did we find out?? he'll be getting mouth surgery. Probably in December or January. He is most def tongue tied, and he has a genetic gum deformity. He has a thicker upper gum that later in life will be hard for him to keep totally clean with his CP. It'll be easy for him to get gum infections. So while Dr Mancuso's in there snipping his tongue, he'll fix his gums as well. BTW to all the Page family, that deformity comes from the Page side, so watch out with your kids, this genetic thing can cause bad teeth and gum disease! gross. So just a heads up.
We've been at urgent care today with Ryder because he's sick. He's had a cold since tuesday, thats getting worse...and last night was a LONG night! ugh. We knew something was wrong. And yep, another ear infection for the right ear. They also tested for RSV, but THANK GOODNESS!!! it came back negatory!
Since Ryder's immune system stinks, (he catches anything!!!) and they think he's asperating, he's high risk for RSV and nemonia(sp??) So when in doubt we always check it out!!!!
We poor guy. He has a special test on dec 11, that'll give us more answers with his swallowing issues.
That is us this week. We're hanging in there!
Posted by The Pages at 3:59 PM
Monday, November 3, 2008
So I changed our Blog and ooops! I deleted all our friend links...and I dont remember all of the blog addresses! so if you are not on there comment, and I'll add you. Sorry!
So Ryder is well. We have a crazy busy week this week w/ appointments and all! On Thursday we find out what the deal is w/ his deformed palette in his mouth. Wish us luck
: ( I have no Idea what they'll decide to do.
Greg got a new scar...He accidentally stabbed himself w/ a razor blade.....it was pretty bad. But he got it stitched up.... it just is another scar to add to the farm scars.
I'm well. I was supposed to go to the republican palin-mccain rally in prescott tonight....but I decided keeping ry up til 2 am w/ a bunch of crazy republicans wasn't a good mom thing to do. So instead my mom dad, bro's and aunt all went w/ out us. bummer! it would've been so much fun!
I've also been busy w/ getting the lawyer stuff all together...so much paper work!!!! I talked w/ the lawyer himself today which was quite nice. There's so many things that went wrong w/ my dr according to him...so we are trying to get everything together for a case. I found out though that we have 2 years to sue. That the money made will most likely go into a trust fund for Ryder....which he'll have access to when he's 18....or if medical reasons require it before then. That's just the money from our lawsuit, then when Ryder turns 18 he can press his own charges, and get another settlement for his disabilities.
There are other options, which as time goes on we'll see what were going to do. But I'm so happy to know that with his disabilities if we win a lawsuit, he'll have money to take care of himself...esp w/ the economy these days! man, oh man! But it looks like a long road ahead of us w/ a lawsuit...but it will def be worth it for Ryder's future.
Posted by The Pages at 6:27 PM
Sunday, November 2, 2008
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Friday, October 31, 2008
An then the weird Wilsteads....My family has always been much into Halloween, esp my mom....these are great. haha.
Posted by The Pages at 10:00 PM
Our first Halloween with our beautiful lil' Ryder! Since he's to small to eat sweets, we just dressed him up, and then lived up how dang adorable he is! What a good kid! We love him so much! Enjoy the pics!
Posted by The Pages at 9:41 PM
Sunday, October 19, 2008
So after the bone pics...we started snapping shots and ended up with these ADORABLE pics of our lil' tough guy....enjoy!
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So I'm at my mom's house...Ryder's hangin out w/ uncle Rob...Rob comes inside laughing and tells me to come right now! So I followed...and this is what I found...Ryder eating bones (fake) in a cauldron. Only Ryder can make creepy look adorable.
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Wednesday, October 8, 2008
talkin' away...look at his eyes, you can see
the red marks where they taped his
eyes during surgery : (
Posted by The Pages at 2:40 PM
Monday, October 6, 2008
HE DID GREAT! Ryder made it out of surgery about 3 hours ago. He did wonderful! All the kids in recovery were crying, and scared...but our lil' champ was fearless! He was out, until mommy and daddy walked in and he heard our voices, then his eyes popped open and he smiled. He was all full of smiles (as usual!) After about 20 minutes of being in mommys arms he got fussy from the pain kickin' in...then they loaded him up with demerol (sp?). After that point he was all loopy! and full of drunken smiles! Greg and I were dying laughing....then Ry started talking...with this dazed look....it was hilarious. We still felt bad though, cuz we knew the pain would come still.
At this moment, he's hooked up to an IV, and Apnea monitor, and snoozin' away! Greg and I left him in his hospital room alone for now, so he can get his much needed rest!!
Funny thing, while Ryder was in surgery, I got a call from his pediatrician saying we need to schedule his surgery for his mouth issues. Poor guy....and he'll be back here in a month or so again for Barium swallow test, and upper GI test ( to check his swallowing, that its not putting him of danger of passing fluid to his lungs) Anyways so the nurses in admitting said, "bye Ryder see you a couple more times this year!" Greg and I laughed and said "yeah seriously!!!"
He's such a cute boy! all these nurses, and hospital workers, when they see him they freak, and say how adorable he is, esp w/ all his smiles!!!
Dr Bailey said he'll be back to normal in a few weeks....they're giving him tylenol w/ codine. We laugh about that, cuz he timed that one well! he's popping out another tooth right now, and has an ear infection, so the codine will do that good!
Posted by The Pages at 11:44 AM
Thursday, October 2, 2008
man, oh man...haha...life is...hmmm...quite crazy at the moment! More and more news comes in about our little guy! Today he had his first speech therapy appt....it went great! We are blessed again w/ an amazing "ryder team member". His speech therapist's name is Karen...and it so talented and great! She instantly heard Ryder's little voice, and said, oh that sound means he needs a barium (sp?) swallow test! to see if fluid's going to lungs....I laughed cuz we have that test ready to go already! She did an evaluation on him....finding out that this lil' guy has 3 thingswrong w/ his mouth! nuts...this kiddo is full of things to fix...hahaha!
His paletteis high, and extremely narrow....so narrow she said shes surprised he can even suck on a nipple. So she gave him props for sucking! that explains part of the weak suck...
Then, also he has extra hard tissue built up around that narrow area.....and he's kinda tongue tied....his skin that holds tongue down is shorter than it should be...so another surgery is in his near future....But he can handle it.
Karen was so happy though to see he's managed already to figure out how to eat with all that and weak trunk control....so this fun. Well I gotta get off the computer cuz he's getting fussy.
Posted by The Pages at 5:38 PM
Tuesday, September 30, 2008
So today Ryder had Physical therapy and it was so freakin' cute...Linda brought a special feeding chair for special needs babies. Ry LOVES it!!! He's all strapped in and able to sit and play with toys on the tray. I'll post pics later! It was so wonderful to watch him finally able to play with a toy sitting up! What a cool kid.
So as if we don't have enough to worry about with his health....next monday Ryder's going into Phoenix Children's Hospital for a minor surgery.... circumsicion (Sp?) In the NICU he was so small and anemic...he had 2 blood tranfusions so there was no way they'd attempt that there! Now his nerves are to developed down there that he can't get it done in a DR's office.
So, his surgeon wants to take a different approach on this procedure then usual.
Because of Ryder's past "scary times".....(all the health scares, and apnea, heart issues... and so on....) The Dr isn't doing it at Banner Desert like he would w/ any other kiddo....it's not going to be outpatient either.....INSTEAD....he's doing it Monday at PCH in-patient surgery. He'll put Ryder completely under, so the pain won't over stimulate his little fragile body. Then they will keep him monitored for at least 24 hours. Its not the snippin' we're worried about, it's the putting him under part : (
He's been put under before for a surgery in the NICU and that wasn't fun! ugh. So wish us luck! I laugh because this kid never gets it easy! He has a tooth popping in, and he has an ear infection...then this...haha. POOR KIDDO! but he's a tough one. He'll handle it.
Greg and I are well. We have our moments that all this hits us, and tears are shed...but after, we are ok. We take it a day at a time. That's all you can really do to stay strong. Nothing new with us, we just play w/ our lil' guy all day. And oh does Ryder love it! and we do too. We keep trying to cheer him on to just roll over already!!
Greg's been working. I've been trying to get all this crap together for a law suit....For those who didnt know.Ry's condition is due to a Doctor's mistake. We were not planning on suing, til MANY people convinced me otherwise....just for Ryder's sake...and future. So wish us luck with that!
Posted by The Pages at 2:24 PM
Saturday, September 27, 2008
so uh people many of you that comment I dont have access to your blog, so please email me w/ your email....so I can add you please! So I can comment back...thanks! : )
Posted by The Pages at 2:48 PM
Thanks for all the comments! We are blessed to have such wonderful friends!! Thank you!
So yesterday I took Ry for a well check appointment. Dr. Leavitt is SO GOOD! As he checked lil' Ry out he said, "oh he has a an ear infection...and popping out a tooth." I thought, "hmm, I had no idea he has not really fussed lately...but that explains why he wont fall asleep!" So of course after Dr leavitt said out loud that Ry had an ear infection, Ry decided oh I guess I can scream and cry now....so the past 24 hours have been "fun" for us : (
Poor kiddo, he never gets it easy! They also pricked his toe to test his blood count....and he slept right thru it. What a kid! Dr. Leavitt also said Ryder is def at risk for mental retardation....we pray that doesn't happen. After a year old or so they can usually tell if he is....if he continues to miss major milestones, he could be. So he better roll over soon!!! and start saying words! crazy kid.
He's in the 1% for weight...and 26th % for length.....he's not catching up quickly due to his CP. But I was happy yesterday to see he's now in 6-9 month clothes! yay! now I have to get him bigger clothes.
He started a new occupational therapist this week...Anthon MCclaws....he's so good! Ry was so lucky to get w him. He told us Ry needs toys w/ only one button so he's not to overwhelmed....and he needs more toys! if anyone wants to get rid of toys or baby boy clothes we'd be more then happy to take them off your hands. Ry can always use new toys to stimulate his brain. Ry also starts feeding/speech specialist monday. We are excited for that! he desperatley needs that!
Greg and are are doing okay still. It's hard though, but we hang in there.
Posted by The Pages at 2:26 PM
Monday, September 22, 2008
I had to tell about this new experience I had today with people helping out....Yesterday I officially met my ward's primary president....wonderful lady I must say! At church many people are curious about Ryder's splints on his arms, or his shoes he always wears....yada-yada-yada. Anyways, she talked to us for awhile, even snatching Greg and had him sub a class, haha sucker!!! She asked about Ryder and we told her everything...CP and all.
Well, today I got a call from her. She started telling me about a family in the stake with 9 year old quadruplets with cerebral palsy....I thought oh yeah I remember them! they were in my old ward, but I never got to know many people there because I was on bed rest....In fact I've thought about contacting this lady esp after Ry's diagnosis, but I was to scared to randomly call a stranger, and ask for advice, or just talk to someone that can relate....Well my primary president took care of that for me, not knowing I wanted to do it already! wierd! anyways....my primary pres was driving home from picking up her kids at school, and saw this mother of the Quads unloading them off the bus. My primary president not even knowing this lady.....stopped got out and told this lady about Ryder and me. WOW!
So the primary president told me about that, and gave me the mother of the Quads number. I called her immediately....what an amazing person! we talked for quite sometime...and she really helped me understand so much more about what we are facing....This woman has 5 kids, 4 in wheelchairs w/ severe CP, yet she offered to help me with Ryder. She insisted on me letting her watch him if I ever needed it. I will probably never need to w/ all the family I have around....BUT WOW! what an example of service, and love. She's an inspiration to me....She has 4 of Ryder! and she's hung in there. Random fact! one of the kiddos is named Rider too....haha.
She also helped me realize something that I couldnt put into words, and get out. It was hard for me to understand why Ryder had this....I could except it, as hard as it is. But I wondered was this his plan from the begininng? The reason it was hard to figure that out was cuz My OB is at fault for his prematurity/ cerebral palsy. Its not a genetic thing...its the fact he came to early. His skull was to fragile to protect his brain at 26 weeks, which caused blood on the brain, which caused cerebral palsy. My DR knew I had all the symtoms of preterm labor, yet did nothing! I found out to late from a DR, that she passed me on to...that My labor could have been stopped 3 different ways! yet my OB did none of those! LAME! I know!!!!
Anyways this mother of the 4 quads w/ CP also had a medical mistake behind her babies early delivery. She said she feels it wasn't the plan for them, that agency falls into place, mistakes happen....which did w/ both of us. Heavenly Father wouldn't do this to a child. But it happened and you can't change it. BUT! Heavenly Father will provide many ways to get through it. For you and the child. (at least thats the way I understood her) AND I AGREE!!!!! I was so glad to talk to her. What a strong mother!!!! wow! I hope to be that way!
Posted by The Pages at 4:12 PM
Saturday, September 20, 2008
moms and Ry was asleep so he layed next to him and
fell asleep. To cute. It happens a lot, I just never take a pic.
So dang, we though we were feeling as ok as we could w/ the news....but once today hit....I think it decided to hit us, and it's a little rough. I'm grateful to have my mom here though...Greg was at work with the truck...I was getting down about Ry's recent Dr. visit...all I had to do was call my mom....and even as busy as she was, she instantly knew I needed her. She dropped everything and came and got Ryder and me. Ry loves his grandma! he smiled when he saw her...probably thinking "yay! get me outta this small apartment!" It's nice having a great family to fall back onto when in need. We are very blessed. Ryder's therapists and Doctors all have commented several times about his wonderful support system/family. Many of them have met my parents, or hear about there involvement...and are so happy knowing that this lil' guy has great grandparents, aunts, and uncles.
Rob, my 15 yr old brother is very involved with Ryders life....he loves him so much. It is so sweet to see his love for him. Rob was one of the very first to see Ryder, and he's been by his side ever since. It's adorable. Tonight my dad layed w/ Ry on the floor and worked with him trying to teach him to roll, or loosen those CP legs. Greg and I watched and smiled. Then my older bro Casey swung by and instantly took Ry and gave him loves. My mom can simply look at Ryder and he laughs knowing she's going to tickle him. Whenever he enters their home my mom instantly throws in primary music for him, because she knows he loves it. Its so cool to know that he has so many people that love him, and want to help him with his difficult struggles. We have been blessed with such great families.
Posted by The Pages at 9:13 PM
Friday, September 19, 2008
he's at an odd angle in the pic, but haha so cute!
the "chucks" are adorable...but they help his feet.
Posted by The Pages at 5:51 PM
Thursday, September 18, 2008
Today Ryder had a neurologist appointment. The Appointment was a "downer" appointment for us, but we are still keeping our hopes high for him. As of 2 weeks ago we barely found out that the cerebral palsy was official...and that it was only mild. Mild meaning that it would be so minor with therapy that you wouoldnt notice he had it unless I told you what to look for. But today that diagnosis changed. As soon as his Dr met with us, she asked many random questions....that lead to her being pretty definite on him having moderate CP. Moderate means it will be noticable to others around him. I found out so much information on his risks of things, and what he has. Forgive me because I can't remember it all!!
First she def noticed his stiffness on his right side. She then asked to look at his brain scans to see where in the brain the damage was done, and how bad it was. Well that kind of determined alot of his diagnosis she was about to give him. The part in his brain that is severely damaged from the blood on the brain at birth ( due to prematurity) affects his right side....which causes the stiffness (aka CP). I'll try to explain...Your spine naturally is stiff, it stiffens all your muscles and body....but your brain is supposed to calm the spine down...kind of like the brain says ' ok spine chill out, relax!" but Ryder's brain is damaged in that spot...so his brain and spine/ right side muscles arn't comunicating as they should. She was going to give him medicine for stiffness, but couldnt cuz it makes the trunk area ( upper body) floppy, or weak, but then she realized he was already extremely floppy and weak. The medicine would cause him to be non-functionable at all in upper body...so we cant give him that yet! but as he's older they may give him botox shots that loosen his muscles. But she did say from here on out his stiffness will get worse each day....even w therapy, but therapy will help a little still :)
Now another thing mentioned or explained to me was more about his right side and CP...she used some medical word that I dont remember...I just remember her explanation. That, in a way his right side is paralized (sp?) but its kind of spastic. So he has spastic CP, mixed with another weird form of CP. With therapy though this can improve.
The Scars on his brain from the resolved water on the brain are so bad! So it's just a matter of time before he starts having seizures. But that doesnt worry me...cause it wont cause anymore brain damage then what he has...as long as they stay under 2 minutes.
As of right now this risk I'm about to tell you doesn't look like he has, but its a risk...mental retardation... He doesnt show signs though! thank goodness! but time will tell.
He will be ADHD...hyper! due to prematurity...and missing the whole last trimester!
Theres more, but I cant remember!
But what does this all mean???? she said he can simply use crutches and a brace, he can even be in a wheelchair... the best in leg braces, but walk with stiffness. He'll be slow in speech....the brain connecting to actually getting out the word will be difficult for him. He will possibly be slower to learn, or even mentally handicapped, or maybe nothing to noticable...but once again only time can tell.
It's def hard on Greg and I, esp today! But we are holding up, cause we know that with us and his therapists and Drs...aka "Ryder's team", we are his only hope. We will work with him and his brain, and body and try to create good habits. This therapy will be a lifetime of therapy...because as soon as he stops theray he regresses. But thats okay...we can handle this. The Dr told us he will have big set backs but to keep positive....that we can do it! and we will.
I remember the day in the NICU we found out about the risks and CP, I cried and cried, thinking of these children in wheelchairs, or with walkers....and thought no not RYDER! so we prayed and prayed he wouldnt have it...others prayed, fasted....but still he has it. Which confirms to me that Heavenly Father has a plan for this lil' angel....and part of that plan is him being special needs. But already this precious boy has touched several lives, given faith to many, but know that we know its part of his plan God has for him. I'm sure he knew his struggles he would face, before coming to earth. But he's been blessed with an amazing spirit and personality to get thru it. We love Ryder and will always be by his side to carry him thru these hard trials! haha probaly literally at times...but thanks for everything! and Thanks to all the prayers.
(sorry for typos! there was so much to type! and I'm to tired to check it all!)
Posted by The Pages at 6:36 PM
Saturday, September 6, 2008
My mom & dad and grandkids...aka Ry's Wilstead cousins.
Posted by The Pages at 8:29 PM
This week has been rougher then the past few...we found out it's official, Ry has cerebral palsy. As of yet its just mild cp. This week he's been showing more signs of his cp....for instance his right foot is being oh so naughty, & turning out and stiffening! naughty foot! his leg is also stiffer then usual...so the CP is trying to kick in & show its presence...but we're fighting it w/ therapy. In a few weeks he'll see a neurologist that can give more advice. His OT says he very well may get a brace on that leg, or maybe a foot insole..that helps w/ CP. Ry's thumbs are still tucking in, which is a CP thing as well. So we are splinting those still too.
It's so hard to watch him try so hard to play w/ a simple toy, & can't grab it or play w/ it like other kiddo's around his age...he gets so frustrated!! In his brain he's SO smart!!! he just can't get his body to do what he wants it to, like grab a toy...or roll, or scoot. He used to roll from time to time but now he can't. But thats why mommy is close by to help him do those things, or to help him know it's ok.
As for Greg and I nothing new....Greg did go riding today and enjoyed it. He saw his buddy stitch and finally got to go jam w/ their busy schedules. So he's had a good weekend! which makes me happy. I havn't done anything lately..just going to friends and fam's casa's to cut hair. My sib's call me 411....cuz I always have the scoop on EVERYONE! but they don't realize that that's part of being a hairdresser! sad but true.
Well that's us this last week!
Posted by The Pages at 7:42 PM
Posted by The Pages at 7:21 PM