Gearing up!

I always get that unsettled feeling before one of Jonahs admits. I guess it's the down fall of knowing that you will be subjected to the hospital life style, rather then being rushed up and admitted with only a moments notice. But on the other hand I am able to plan out some stuff like Morgan and Isaac going to the happiest place on earth!  I'm getting jealous!

I am bringing all the essentials this hospitalization. Jonah's tickle me Elmo, Pizza Elmo, Sing with me Elmo,  and funny story telling Elmo!  Oh and his little red 'Scoot & Zoom'! and perhaps some clothes if they will fit in the bag.

ready to ride

What?  I'm NOT in this alone? How did I ever forget about my friends at the Utah Parent Center?  They are great advocates! I'm calling in the morning to use their resource. Ahh, life just got a bit better. I called around and got the names and numbers of who the urologist needs to call. I hate feeling sad and defeated.  I'm ready to to jump back on the horse! Its not the end of the world. I will get it all figured out. No I'm not drunk, nor bipolar, just needed to get my hair done, and talk to friends.  Magic.

Breaking

 I hate the feeling of feeling helpless.  I hate everything that comes with having a sick child.  I am desperate for answers!  I want answers as to why he is on the spectrum, why his lungs are so shitty, why he has these new sets of problems that don't even fit in to the lung disease!  How can one child have so many BIZARRE problems?  Let's face it, there is nothing normal with any of these illnesses!  I want him to be normal. I want a "normal" life.  I am far from settling that this is it, and this is how it's gonna be.  Why am I the only one who isn't settling?  Why?

Obviously the urology appointment didn't go well.  Just another hours of waisted time.  However the new doctor did say that if I get him the phone numbers he would call. I told him that j was being admitted Friday and that I would like him to be started on the Viagra same day as emition so he can have it in his body, as it will take 3-4 days to start working. (the med will be covered while inside the hospital)

Jonah is a nightmare to be around, unless he is sleeping.  The combination of being on steroids for the last month and terrible 2's (or 3's) has made him mental.  he is being so mean, hitting, spitting, yelling, I could go on but I'm already upset enough about the morning, no need to depress myself with the way my child is acting.
Time to get to work calling the crack head people who decide my child's fate.

Urology: Round 2

Tomorrow morning Mr Jonah and I have an appointment with urology.  If you follow me on facebook and my blog you will recall that I'm not a fan of any of these doctors.  I fired his last urologist and went on a hunt to find another.  I called up to the U of U and was denied to see the doctor that I wanted because "all children need to go through PCMC."  I replied, "what if the docs there are not taking care of  my child?" She then said that perhaps I could go through another hospital...I don't want another hospital!  I want the U of U as it is a research hospital and know one has seen the ***condition*** Jonah has in a child of his age with out having Sickle's disease which he does not have!

In the past 6 days Jonah has had an erection for about 66 hours that I have noticed. Note this is not all in one phase.  this is over the course of the 6 days...and counting. 

I have a pretty script written out for a med he needs (Viagra) but cannot get it approved.  I need someone to fight with me as I am just a parent, I do not hold a medical degree. My letters and phone calls hardly mean a thing. I need the doctor to step up and help me out.  Why won't they?  His Priapism is causing huge issues in his everyday life.  It is sad to watch him so uncomfortable and not have a solution of healing for him. His teachers are concerned, his therapist's are concerned his other doctors are concerned so what the heck is the problem with getting some help from urology?  Well these questions will be answered tomorrow! It might be a great appointment, but I'm not holding my breath.

At this moment these are a few of my favorite things!

• the way Jonah says water- "arter"
• the treadmill, yes you read it right. The treadmill.
• how independent my kiddos are getting.
• my wonderful friends and family, always there to make me laugh.
• a husband who puts up with my tirades, and split personality disorder
• the little job that I have cleaning a house for some extra cash
• facebook and blogging for helping me escape when I feel the need to leave but still be present.
• A testimony of God and Christ.
• all of the wonderful people who love, really love my Jman (even though they are not blood relatives they are all a part of Jonah's family)
• the great sense of humor that Morgan has, always when I'm not expecting it! (that's the best time to laugh)
• listening to a song I swore was wrote for me, about me, to me. And always an added bonus when it hits my sole to the core and makes me cry.
• burritos from Chipotle ~ hold the rice
• sunny days with the snow high in the mountains.  It's one of the most beautiful scenes.
•  The blessing to be at home with my kids
• Isaac's job, flight bennie's kick butt!

This is my hood~ Tsumani ~

http://www.youtube.com/watch?v=Zgt8qBSZEn0&feature=player_embedded#at=96

Anxiety

The anxiety is setting in.  I suppose it's time to throw back some of those little white tabs.  I hope I have a refill!

 Jonah will be admitted next Friday.  It just kind of snuck up on me. I feel the anxiety onset and asked myself  why this is getting me so wound up. The answer: FEAR.

I'm so afraid that this is the admit that he will have to get the central line placed. He had only ONE vein left last clean out and it was teeny tiny and the team was unsure that even that vein would make the IV. Ugh.  I know I know kids them placed and life goes on, but come on! Have you met my wild child???  I will just keep praying that a new, beautiful, virgin vein will appear in the midst of the little glowing blue light AKA the vein finder!

Happy 5th Birthday Morgan!!!

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Fun fun family day!

The kids had such a great day, I wish all of our saturdays were this much fun.

We were invited by a special needs goup we are apart of (Hopekids) to go to a family day, at Hollywood connections. Morgan was a little skeptical at first as the first ride we went on was the merry-go-round. Jonah loved it, but morgan prefered to stand with Isaac and I, holding to the poles. By the end of our time there, Morgan was begging to go on the roller coaster again!  Im glad they had fun...We did too! Next week (with the same group) Morgan and I are going to go see  Disney on Ice.  I am very much looking forward to that!

Jonah is doing better.  He is on a ton of steroids but tonight I will start the wene. He had issues with his breathing a couple days ago and then it got so bad he was sent home from school on Wednesday. I tried to manage it myself but by thursday I gave up and called the doctor.  It seems as Jonah has got some issues wit hreguards to the steroids. He was on a tiny dose from when he had RSV but the slightest change sent him over board.  He was having withdrals. But like I said we will start the wne again tonight and I will call the doc to check in with her on Monday to see what the next dose will be. Hopefully it wil be the smaller dose instead of a larger.

Maggie Agnew

I went to the viewing for sweet Maggie.  Inside this little church there was so much love.  This is one little girl who made a lasting impact on many. The table's were covered in pink daises, lolly pops, binkies and of course the most beautiful pictures of this sweet little angel... Maggie will be missed by many.  A smile so contagious will forever be engraved in my heart.