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!

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! : )

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.

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!

Saturday, September 20, 2008

Rob and Ryder crashed on the floor. Rob came home to my
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.

Friday, September 19, 2008

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!)

Saturday, September 6, 2008

Who are Ry's cousins? Clarissa & Rocky are in gpa's arms, then Ryder's in gma's arms, then going to the right...Trevor, Tanner, then under gpa going right...is Gehrig, Scout, Brian, Kinzy, Zakry, Chance, Drake, Cali, and above them is Jade and Dallin....missing is Heidi's kid-dog Beagsley. haha! Oh they are all SO DANG CUTE!!!! (screaming kids were due to 110 degree temp out! ugh!)

My mom & dad and grandkids...aka Ry's Wilstead cousins.

Some requested this to be posted so they could see bigger.

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!


Ry and mommy.

Ry and uncle Rob.

mean uncle Rob, likes to do this to me!

Rob wishes I could walk already!!!

daddy likes to tickle me!

trying to feed myself...but not quite happening yet!

daddy loves me soooo much!