Saturday, December 13, 2008

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 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!

Just some pics of us and my bro w ryder...

Saturday, December 6, 2008

Sadly baby Miles passed away. He only lived 50 hours. Please keep Mark and Ashley in your prayers. Thanks.

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

I hope its not blocked!

Thanks Kira & Ryder

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 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!