Monday, March 30, 2009

Ryder is in the hospital...the bug has got him bad. Its been a scary bad we had to call 911.... Ryder is still having bad issues with everything.....they say preemies catch it all....esp the ones that get CP......well thats true....I think Ryder has rotavirus....a horrible infection in the intestines/ stool.
Banner desert is being lame...and I hate it there. I'm trying to get him to Phoenix childrens where his GI doctor is... and nuero doc.....cuz banner desert is not answering my Q's....and treating me like I dont know my own kid...they sent in some "specialist" today to make sure that I knew my "my sons diet of only formula shouldnt continuw after one year old..." WELL DUH!!! you think I dont know my kid!!!!????? I kindly told the girl that Ryder shes MANY DR's and specialists and he's on the formula still for a reason!they told me to keep it that way cuz he has cp!!!! and isnt a "normal kid!"
Then Ryder puked all over his arm/ IV bandaids....( ill explain that sad ordeal) anyways I've beenbugging them to change it or cover it...they wont.....I'm not happy with the service there at all! I'm so stressed out with it all....i never cry but ugh they put me there!!!
But WONDERFUL DR MANCUSO!!!! I LOVE THE GUY!!!!! wow he made us feel so much better, he saw rys name on the ER name list, and hunted us down our first trip there saturday....and was so kind and cheered us up....then today i was SO stressed and was walking out the peds doors and there he was....he gave me a hug and told me that we are so good, and strong. What a wonderful DR, unfortunately with what ry has dr mancuso cant help.
And Shannon Green...she made us feel so good in the ER shes the child life specialist/and my moms neighbor....and amazing at her job! she made Greg and I and Ryder feel so much better....she was with us thru the ER stay...which wasnt good for little Ryder.
w/in 24 hours ryder was poked 19 times for a Iv's only 2 of those pokes were a success. The EMT couldnt get it....he went thru 6 or so ER nurses attempting it.....they were talking about doing a neck IV on a big vein or thru the bone marrow....drlling into the bone. They were desperate...but a great ER nurse steve ( great guy!!!) tried 3 more times with a special light and got it!
since ryders had a rough life with many iv's his veins are scarred and extremely hard to get an iv into. So now we have to ask for a trauma nurse to get the fact greg juswt called and said ryders iv went bad a half hour ago....and the nurse was going to try for another iv but Greg said, "no! get a trauma nurse to do it" and the T nurse came and got it on the first shot. Thank goodness!!!!! ryders body already is filled with white dots from the NICU ivs, and pricks....and today he's covered in little purple bruises from the 20 x hes been poked for ivs alone...that doesnt include the pokes for blood work either!
On top of all this....we are not moved out at all and our lease is up tomorrow....i hope something works out....because we are so overwhelmed with Ryder I hate thinking about the move.
I'm trying to stay happy and positive but this time its SOOOOOOOOO hard....I feel like im losing my mind....ugh. and Greg is feeling the stress to. We love ryder so much and this worries us badly....we are not getting the answers we need at Banner desert and i hate that. so tomorrow im going to try and get him transferred to phoenix childrens...where all his major DR's are...and i love the staff there!
oh i think ryder has rotavirus....i had to research his symtoms myself and figure it out...lame huh??? a nurse at desert agrees with me. but they wont test him for lame. and they are testing him for RSV because he has a cough....i keep telling them....its his reflux, and low tone and CP....and that his throat is irritated by the puking....but they have him on lock down for so frustrated!!!! I know my own kid.. he isnt even congested its a dry cough. oh well. Sorry can you tell im so mad!?? i'll try and update more later.

Thursday, March 26, 2009

Life's been pretty typical for us....cRaZy!!!!! We had issues with the move, and still have not moved.....the new apartment totally screwed things up....they gave us the wrong size apartment....WAY TO SMALL!!! then after much drama we finally got the last big apartment available. The catch is we cant move in til the 31st...the same day our current lease is up....UGH! so we will be going insane that day.....more so then we are now. JK.

Lets update on Ryder....he's been to many appointments lately....the most important was the Gastro. appt. Ryder was diagnopsed w/ bad acid reflux. now hes on meds!!! zantac?? 3 x a day!! and milk of magnesia once a day. Its working! yay! no more puking all the time......with exceptions of today....

Today Ryder came down with a wicked bad stomach bug....enough to make me SO nervous! he's having a very hard time with it. Poor guy.

I'll write more at a later time....but all is well for us.
cool things ryder does now....says "car" "go" "ba-ba" "neener-neener" "yes" "ah-oo-ee!" (aka one two three!) "og" (dog) ......lots of words!!!! his speech path. says he say-sounds/ words that most kids dont learn til about five. Ryder also enjoys shaking his no no no! he loves to read!!! he wont eat the book...he'll stare at the words as you point and read...and he turns the pages for you! At night Ryder looks to the sky searching for the moon....he loves the moon!!!
During the day if he hears a plane he looks for it and smiles. Ryder also LOVES playing with grandma Wilstead's wooden train set....he sits in his special chair and puts the train on the track (or tries!) and plays for at least an hour with the trains, and cars!

What a miracle! huh? this all shows that mentally this kid is so there! we are happy for that!

Monday, March 9, 2009

I just have to say thank you for all of your comments! We appreciate them so much! We are sorry we can't comment back as often as we should. We usually are on here just to update the blog then sign off. Just know that we get all the beautiful comments and we love them! It brings smiles to our faces.

So Ryder, Ryder, week after surgery update.....ANOTHER EAR INFECTION!!! yes, even with the tubes. Man, i just wish I could take the ear infections myself, but not possible. He hasn't slept well this entire week...fussy and in pain. This morning he woke up I picked him up and saw the right ear drained tons of fluid down his ear and cheek. I'm like, "uh-oh!" Dr Mancuso said that was a sign of an ear infection. Well I called him, and they said this was a sign of a very bad ear infection...that would require STRONG antibiotic drops. I just feel for this kid!

The best part, is besides the long nights of squirming around in his crib, you'd never know this kid had another ear infection. That's how he is through everything though. He rarely cries....just smiles. I just love him so much he's so sweet!!!! and special. We are SO BLESSED! we are constantly handed everything we need to care from him from Heavenly Father....It just reassures me that this little kid has a special plan far this kid has touched many lives. We are just so grateful to have him in our home. I hope we will do a good job!

So we also got a new number 480-584-0071....for all those who have tried. Sorry I just got this new perm. #.

Also Greg and I are moving on the Gilbert! gil and'll be fun. We'll be moving into a bigger place. YAy!

Wednesday, March 4, 2009

We got home today. Ryder's surgery itself went well. Coming out of anesthesia was the scary part. Apparently Ryder had some issues there. I didn't dig for the details, because I didn't want to know. From what I know, Ryder Choked....or something. He stopped breathing, and they had to stimulate him to get him to breath. The nurse said something about suctioning him. I don't know if that was from aspiration or what???? I didn't want to know...I was already scared.

Well ten minutes after surgery, I told Greg it was ok for him to head to work (he had to go, because he's still in training). Greg left...within the five minutes of leaving Ryder reacted to the medicine the anesheseologist (sp?) gave him to get rid of the secretions in his throat, lungs...( the stuff he choked on). Well Ryder's body started to turn all blotchy red, some people do that as a side effect....but then Ryder turned ALL red, with high blood pressure and a high fever. I was terrifed, and alone with just the nurses. A bunch of nurses that came to help didn't think before speaking, but they all said "oh wow! he's so red! I've never seen that happen!" Then Ryder's nurse kindly asked them to not say that, cuz I was already scared. The Doctor came and checked him out and said that it was just a reaction, and that it would go away in a few hours. The redness did last about 3 hours or so, and those hours were filled with Ryder screaming the whole time. In order to keep him kind of calm I had to stand and bounce this twenty eight pound kid....i stood all 3 hours! My mom showed up to help, but nope Ry wanted mommy.

Then for pain all he could get was tylenol. It was crazy....THEN!!! Ryder decided he no longer wanted to eat. Dr Mancuso said it was a neurological thing...after the choking he feared to swallow....even his spit. So that was scary as well. Then Finally yesterday afternoon he ate normal again.....ugh. Thank you Greg! Greg was so sweet with him, and for some reason for Dad Ryder would kinda eat, then he snapped back into his eating now today we are home! yay!

He talking more, and eating's great! This kid scares us from time to time, but then it's all ok. What a kid, he's so wonderful! He's telling me stories now....and babbling about his Dad.... haha. To cute.

Thanks for Prayers, and your comments.

Sunday, March 1, 2009

Tomorrow's the big day! We are excited, and nervous for all at the same time. Ryder is so good at coming out of surgeries, but this one will be more painful. But it'll be ok.

So Mr. Ryder decided this week that he's a freakin' cool kid....and showed us he wants to start scooting. It's his own lil' kinda scoot, but it works for him!! He was so proud of himself, but Oh I was SO dang proud of him!!!! I almost cried. Then he got a cold, and we've kept him off the floor so it does'nt settle in his lungs. After he recovers from tomorrow I hope he catches back up real quick.

So we had to get rid of our truck, because Ryder's special needs carseat didn't now I am forced to give into a MINI-VAN!!! eeeek! me & minivan, I laugh at the thought! but for this kid I can do it!!! So if anyone knows of any good deals, let me know!

We'll update soon of Ry's surgery! : ) wish him luck!