The diva decided no sleep for mom!

Hello all.. Sorry for the lack of updates on the diva. Days have flown so fast with school keeping me busy. 10 chapters + is quite a bit. Ms K decided tonight her heart rate was going to be 50. I dont play those games with her. I promptly plopped my hiney next to her bed with my laptop and here i remain. She is behaving. I try to leave the room and heart rate goes down. ugh.
So today was a very eventful day. We got up this morning. She decided to vomit three times in less than 5 minutes at a time.

Hello all. Another late night for me tonight. I have to wait on her night nurse especially since she thought 58 was good must a minute ago. Seriously. I am so over this mess. That is not even one beat per second. I am going to call her cardiac doc in the morning. We were going to talk about putting her on a drug till we get our pacemaker. I know they don't want her to till after the surgery but come on. She literally passed out today. Like went from standing to deer in headlights look. Scared me cause she hit her head on the way down.
Tomorrow I also start back to school. I am nervous. She has so much going on right now. I know I can do it. I am determined. I am so frustrated while I am typing k keeps beeping. Can't get her ticker to behave.

the date and place released.:)

soooo our tenantive date is June 30th admit and July 1 st for surgery. We have to check in Cleveland on the 29. They are calling Monday or Tuesday so I can get flights booked.

trying a post from my phone.:)

Hello. Forgive me for the errors. I am posting off my new phone. I am giving a try since I am always on my phone. Good thing they have unlimited plans.
Anywho. We still do not have an answer for the diva. I can pray that since Dr Brennan will be back then we will get answers. Today I noticed her tummy was really distended after she vomited. Their was a bulge on her left side. So we need to go see Brennan tomorrow anyways.
I just hope Dr k stops being an Asshat. He is in Ohio and refusing to do what we need. He does not have to live with her. Just so freaking frustrating. My baby is suffering bc of their tug of war. Ugh.
Anyone with advice I am open to it.

Where are we going?!?!

That's the million dollar question of the night. I was hoping we would have an answer and we dont just more questions now! ugh. Ohio called dr m said i want her to see dr x before we go in surgery. ME: WHY? what is the reasoning? Dr M: Just to see if we meet eye to eye on this then plan your surgery. Me: Oh hell no! So dr m says they will call me back later. Btw they were supposed to call me back when we left ohio to let me know all the details of appointments. No they have to be terds. Literally talk to their staff and you will spewing venom. So the nurse that was supposed to come out or whatever. Never called or anything. So I was the lone stranger. Then I called arkansas childrens hospital. I said i am calling from ok for dr b's office and trying to find out if you do this procedure. One min.. cheif of surgery. Yes mam we do. ME when can you get her? Next week. ugh.. Please let this come through. She needs it bad!
I Call the neuro doc and she is just as frazzled bc the sect in ohio was terribly rude to her. Does not surprise me! But alas lets remember why we are doing this. For ms K! So tomorrow ms L from dr b office is calling ohio to bug them! She said I will have an answer for you TOMORROW! She said i dont have pt's till noon so they will hear from me every 30 mins! She is serious too! So say some prayers that we can get her what she needs.
Btw we took older girls with papa and watched shrek 4. they loved it! I got me a new car bc mine was totaled. Then btw my roof has a leak thanks to the freaking hail. We are hoping to do a car wash in august for ms k..and hopefully get our t-shirt sales going this coming month.

A plan for a few things.

So as i am trying to gather my mind to put it to rest i was like oh go blog! So I have to tell you about alexus at the dealership today. She is potty training and no potty was available as they are closed on sundays.. She went pee by a tree. She said mom I peed like a dog does. Omg rofl. It was hilarious!
So my update is that I have passed most of my finals. I find out on wednesday for sure. I start back on the 14th of June. I am excited to keep going. Due to the lovely hail storm my van got totaled so that is why i am looking for a car. I think I found one.
Friday k went to the doc. I wanted to yell, scream, and cry. And you know what?! I did all 3 and the doc just said mom you do it! So kenadie's disease is irreversable. Her labs came back poopy again. Ohio said they wont do her test until we get all the money together. Which is poop! So we dont have time like that on our hands. So tuesday I will be using my unlimited cell phone minutes calling a bunch of hospitals. We also will have to know approximate dates. Her pedi will put her in the hospital to get our surgery asap! Our home health is going to send an office person to my house to help me call! Hopefully we will be in the hospital fast! If you can help with any donations for our flights or anything please let me know. We will be there about a week. So anything can help!
Also I need some advice. First I want to ask all my readers a question... What is family to you? What do expect from your family in a crisis of such?
Okay so my advice part.. I have a person in our lives who is in denial about kenadie. And everything seems to be about that person. Why dont I tell them xyz but when i do I cant handle xyz. What do you do about them?! I would love to go deep in this but i have more than enough to deal with but deal with more drama. I honestly dont know what to do. My dh says forget it and dont bother with it. My brain says fix it with my fists and/or mouth. But my heart says alot.. and it really hurts. When i grew up. I stayed the night with my aunts and uncles. I always seen my family. I would like to think we were somewhat close. Now.. ha! So i just want that for my children. I have some people like ab who stays in contact with us. I feel like if i need to i can call anytime. Then my supportive people. But really those who could just pitch in an hr once a month or something. We are not asking you for your life or something. God forbid anyone finds them in our situation. I pray it never happens. so advice on how to handle tis please.
so this week.. be on the look out where we will be going to for surgery. it will be release on the blog first! :)

Link for the first fundraiser!

MS. ERIKA HAS SAID SHE WILL DONATE ALL PROCEEDS FROM SALES TO MS KENADIE!
LINK:CraftyRika.blogspot.com

come on and lets help the diva!