Monday, August 12, 2013

Help and Share :)

Once upon a time, there were two little Princes who were very special.  They both had special super powers!!  Everyone was a bit jealous of their special super powers, even the King and Queen and the other two Princes. 
Prince Noah had the super power to defy odds.  The Wizards of Health would say one thing, and he would prove them wrong!  The Wizards said he wouldn’t live.  He turned into the Boy who Lived. They said he wouldn’t walk, or talk, but he did both!  Every time they gave him a line in the sand, he jumped it, effortlessly.   It didn’t matter that he was born with extra chromosomes.  It didn’t matter what they said, the King and Queen made sure that he never felt as if he was limited.  So when the Wizards said he’d never touch the sky, he laughed, and climbed on the roof of the castle. He caught a cloud and pulled the sky to him.  
Prince Nathan had the super power of charm.  There was an evil curse put upon him, and he lost his voice and the ability to grow but there was a magical spell cast, too.  All Prince Nathan had to do was look at you with those beautiful blue eyes and you were captivated.  You realized this child was special and you really wanted to know him and be around him.  Amazed by what he could do being so small, he became the talk of the kingdom.  Everyone gathered to cheer and watch what this little Prince could do.  He did it all.  
The King and Queen would not tax the people, so when the Wizards of Health said the Princes needed something that cost bags of gold, they had to turn to the people to help with what they could.  They hated to do so because they knew that the gold the people carried was hard earned, but they had no other choice.  To their surprise, the people of the kingdom gave their hard earned gold.  The Queen cried, and King was amazed by the kindness the people showed.  Every copper counted!!  
So when the King and Queen were given the challenge to raise 600 gold in a week, to be able to use a magical talking device for Prince Nathan,to counter the evil curse that was placed upon him…  in hopes the Wizards of Health would later GIVE it to them, once it was proven the little Prince could navigate it and use it well… they had to turn to the people of the kingdom for their kindness.  
Would the people rise to the occasion with any copper they could spare?  Would they help spread the word if they couldn’t spare any?   They prayed for kindness, and love :)
Please help us raise $600 to be able to trial run the Nova Chat 7 Alternative Communication Device with Nathan in hopes that insurance will finally cover it.  You can donate here at FundRazr or donate directly to Paypal..  The boys have a lot of needs that insurance isn’t covering right now… and every little bit helps!  Even if you can’t help, we’d appreciate it if you spread the word!! 
If you want to read more about the boys, your can read more about Prince Noah and Prince Nathan … and here at My Unique Flowers
We are eternally grateful for your kindness and show of support. 
Oh, for those who can help, Prince Nathan has offered to come and personally tend to your horses!! 

Home Jiggity Jig ...

Monday .....  he didn't get off the couch.  I think he got up once.  He had a bowl of Skylanders and the tablet - and did that stuff.  We got him to eat, he'd scream anytime we MENTIONED changing his diaper...   he was miserable :/

It was hot and I actually managed to get him in a t-shirt.  Course, he didn't want to change the shirt, so as long as it wasn't dirty, I let him wear it for a few days...

 His balloon friends.  Yo-Gabba-Gabba died on the way home when I forcefully shoved him in the trunk.


Pretty much the same thing as the day before...... only I think he got up twice.

Kaedyn kept him occupied :)

In addition to his normal meds, this is what he came home on.  One for bladder spasms, Oxy for pain, ibuprofen, antibiotic, and tylonel.


Slowly he was becoming more him ..... he got up some and played on the computer too...  


The day we get the tubes out!!!!!!!  YAY!!!!!!!!
 He slept on the way to Seattle, and insisted on a wheelchair.  I wouldn't want to walk around with all those tubes......

He actually asked for a CHEESEBURGER!!!  He never asks for cheeseburgers.  Usually his food is chicken, that's it.  And stuff from the salad bar.  But this time..... he ASKED for a CHEESEBURGER...

He got new ear pieces for his hearing aids... blue ones....  he wore them really good that day too!!  Most of the day!

They only pulled the blue tube out (from the penis) and wanted to leave the other catheter in until we were sure that he could pee okay.  

Talking about the alternative communication device and what our options were.....

 This...... just made me want to say ..... "Can you hear me now?"



He was getting up and moving around a bit more for sure.   One tube down, one to go...


Nathan has this deal where he likes to wear the same thing for days at a time.  He gets attached to his clothes...  as long as it's not dirty... I don't care.
 I asked him what he thought about having one tube out - he gave me the thumbs up!

So .....  Nathan was screwing around with his balloons, and I told him to stop at one point, but he didnt listen.  Next thing I know .... he's coming in by me crying.  He popped his balloon ... not just any balloon... his ANGRY BIRD balloon....

NO ONE KILLS AN ANGRY BIRD AND GETS AWAY WITH IT..... not even him!!  He's grieving.

But apparently Mommy taking a million pictures and saying "don't smile" breaks us out of our Angry Bird Death Melt-Down......


It's NO MORE TUBES day!!!!!!  Nathan goes and gets his last catheter out today!!   When I told him, this was his reaction.......

He got home and showed me how he has a bandage there now.

THUMBS UP ....... no more tubes!!!!!!!

Nathan Post-Surgery

Day 1 after Surgery was a bit rough.  

But he totally surprised me by eating most of a waffle!!  And asking to drink the orange juice!!  I thought - woohoo - maybe things won't be that bad this time around....

So he's double diapered.  The blue catheter is coming out of his penis, and is there for support and stability while things heal over the next week.  There is a clear cath next to it, and that is going from his bladder, out of his belly, and that's the one the urine is coming out of.  Everything is black and blue and swollen three times it's size under the diaper :(

We got a visit from the gift shop.   A lady came in the door carrying gift bags and balloons, and he lit up!  I said "are those for Nathan?" and she said "they sure are!" and I said "WOW!" ...  then, another lady walked in behind her with MORE!!!   We can't thank you guys who sent stuff through the gift shop, enough!!  I really helped lift his mood, it made him smile, and he signed I LOVE YOU for the FIRST time!!!!!!!

This is Nathans fan club!!   Sitting at the end of his bed, a lot of his stuffies (new and ones we brought from home) were cheering him on to eat and drink!!

He slept a lot of Saturday away ...   which was good.

 Nathan's all serious - and Mom - not so much!!  You see that Yo-Gabba-Gabba creeping up to kill me??

Professor Abe came to visit us.  Nathan didn't want to touch him but I gave him a good petting.  He's a BIG dog ..... bigger than Keya.

SUNDAY - Post Surgery Day 2

First thing he did was eat breakfast and throw up.  Dennis was already on his way up to pick us up to go home, and that threw a wrench in plans.  He's gotta keep down two meals prior to going home... so...  ugh....   We ended up hanging around all day until after dinner - when we finally DID get to go home cuz he didn't throw up anymore :)

It was just trying to control his pain, he had a suppository to help him poop, trying to get him to eat and drink...

Playing with bubbles inside and outside... we managed to get him to get up and walk some!!!

Going home :)   He just wanted to go home by the end of the day....

Monday, August 5, 2013

Friday .... Day of Surgery....

Okay ...  so I thought long and hard about what to pack...  I knew we'd be there at least 2 to 3 days...  but packed for longer - just incase.   My suitcase, his bag of activities (Rex) Backpack with stuff to take in with him to the surgery (Angry Birds) behind that is the Mario dufflebag .. his suitcase, which PJ pants and such.  And our bathroom bag.  Then the big shopping bag has blankets and pillows.

Nathan and I both slept on the way there.  We left really early so that we could be sure if we got stuck in traffic, we could still get there and ended up being an hour early.  Better an hour early then stuck in traffic...

He was trying to pretend not to be there.

Mommy and Nathan being silly ...
 Playing on the tablet ...  then they called us back, did his temp and all that stuff.  
 He happened to see the DR. Pepper in my bag, whoops!  The last pic is his reaction when I explained he couldn't have it :(

All the pre-surgery rooms have these really cool glass art pieces on them...

NOT NOT NOT NOT ... I repeat ... NOT happy about being in a gown.  He knows what that means.

So .... we were suppose to get there at 9:15am.  We got called back at 9:15am.  His surgery was suppose to start - I'm assuming, around 10am.   That's about when they came in and told us that the case ahead of us was taking a lot longer than expected and there was going to be a delay.

So trying to entertain the minion begins.  

11am comes and goes...... no word.   But Daddy and Nathan were comparing hands....... thought it was so cute.

So 11:30-ish I got up and hunted down one of the nurses that had been in the room, and asked her about how much longer.  Nathan was DESPERATELY hungry .. every couple minutes he was desperately signing to eat ...  and we'd have to explain to him that he couldn't yet.  It became extremely hard to tell him we couldn't feed him and no he couldn't even have something to drink.

Lights are magical with Nathan though, and thank goodness for this thing.....

Finally at about 12:15 ... the doctors came filing in doing all the preparations prior to surgery, asked if one of us wanted to take him back to make the transition easier. Dad went back cuz if I had, I would have been a blubbering mess and only stressed him out more.  

So about 12:30pm ...  the surgery started.   It was only suppose to take between 2 and 3 hours.  Doc thought closer to 2.  So we had our handy dandy beeper that would go off when he was done.
 We went to eat, put stuff in the car we didn't need anymore, walk around...  2 hours pass, then two and a half...  then 3....   I'm getting nervous.  Dennis says "Let's go get a snack.  That will surely tempt them to be done and page us."  So we go up and get a snack.  Do they beep us?  Nope.  I even told Dennis how wrong he was....  so then we went to meander around the gift shop, and low and behold, 3 and a half hours later, we finally get beeped.  So we rushed downstairs and got there just as the doctor was getting out to the desk.  

We went back in a room and he told us everything went great.  That they took the piece of the bottom lip to create a strong structure around the urethra ...  that they were able to save the right testicle (it was up by his hip) ...  he said that they got it down and tethered it (it's been brought down twice before) and that although it didn't look absolutely normal, it wasn't dead ...  it was about half the size of the other one - and we'd have to keep an eye on it.

We didn't get a good look at everything until later... but by the time we saw it, there was horrible swelling and bruising.  There was a blue catheter coming out of his penis, which they did manage to get the top of the urethra to the tip of his penis (yay!) so hopefully no more surgeries to try to do this (this was his third) ...   this cath was to help support things as they heal .. and so they heal properly.  He also had a tube coming out of his belly - from his bladder, to drain urine while things are healing.

His penis was swollen to three times it's normal size, and so was (is) his right testicle.  The whole area is just a grossly dark color of purple.

He's wearing double diapers.  The one closest to his skin is to help protect his little manhood... and the catheters are both on the outside of that diaper, for drainage.  And this picture was actually taken on Saturday.

So we were told about a half hour to an hour we'd get his room number.  A little over an hour later .. I went up to the desk and asked if they had gotten his room number yet, she said she tried to page us .. whoops...  I blame Dennis.   So we got the room number, got up there, told it would be a little bit longer, he was still in recovery.

So we went - ate dinner ....  and got in the car, drove around to the hospital side of things, and started to drag stuff up.   After two hours in recovery - total - he finally got wheeled in.

So ...  he was (as to be expected) super tired when he got out of surgery.
Nathan got super upset every time Dennis was going to leave, so he couldn't bare to leave him.  We didn't plan on that though...  but it all worked out.