Post cardiac electrophysiologist!

So before i get started. Some of you might be scratching your head trying to figure out what kind of cardiac doc she went to. She went to one that deals with the electric in the heart. Your sa node is the body's natural pacemaker and it creates the electricity that you have to pump it with. ;) So breif review there.
Well her ekg was as good. So was the bp, temp, and hr. We would have liked to see it higher but she has to show her doctor that she can perform for him at anytime. So dr P came in and said she looks beautiful. He asked her if he could listen to her heart. She said NO! MY HEART! He said well can i listen to your juice? NO MY JUICE. Then he said can i tickle your belly. She said NO MY BELLY HURTS! Lets just say.. she was not into letting him touch her. He listened to her ticker finally after she gets to put the stethescope on her heart. Said it sounded good. A smidge different but nothing crazy! So yeah. Then we sit and have the talk. She is devloping on an amzing level. But unfortunately her brain HATES communicating to the rest of the body. Her highway gets blocked too much. lol. Your brain needs to send the message to the sa node so you can have a beating heart. So if you dont get that message then you dont get that. So he then discussed pacemakers. I have always known since she has been diagnosed that this might be an option for her. My husband and I have thouroughly discussed this also. He said we can do a trial and error. The hard part is kenadie has a rare disease that might not even have a true label for now. With all her bloodwork going ape nuts. So if it gets deemed mitocondrial then she can not get the pacemaker because then it would be a fight with the cells and the machine.One accomplishment we made today is the doctor agreed that kenadie is passing out from her hr going from 140bpm to 40. I know i am n ot crazy just wish people would listen.
If it is her immunodefiencey disease then we can get one. However she is not eligible unless it gets really bad or we can keep status quo until she turns 3. She can not get one right now because they will have to recrack her chest open put the drain tubes and all that stuff in. Her body can't handle that right now. When she turns 3 they can put it in through the artery. So we obviously would prefer that. We now have to do heart monitoring every 3 months for 1 month long. So we can make sure we dont have any deteriation going on that we dont know about.
So much relies on the bloodwork and the testing that is going to be performed in the next couple of weeks. There are some very hard decisions that will be made. I pray for the strength and the comfort and pray for my support system. Being a mother to a special needs child where there is not even 15 in the us like your child is so hard. I will try to type more tomorrow after the pedi.. I am just so tired and emotionally drained.

Well Crap!

I typed a blog post last week and somehow it was not on there. :( Guess my laptop was being a pissy little thing. ugh.
So in the past MONTH..ALOT has went on. Lets update on my other two princess before I update on the DIVA!
Genesis: She tested for early 1st grade entrance and missed it by 4 points. :( But her teacher said she is going to use her as a leader and will get some 1st grade material to keep her challenged. Her teacher is ms M. She sounds really nice. Then my daughter got attacked by a little boy at her learning center. One of the rare times I dont pick her up and her dad does this happens. He of course did not ask any questions so i blew up that phone to see what the heck happened. My daughter knows that momma will eat her lunch (figure of speech) if she misbehaves. So I asked and was told the little boy has a known anger problem and got mad at the teacher and proceeded to turn around and punch my child on the orbital bone. He was asked why and he said because she is white and a girl. WTF?!?!@?!?! Guess i should be glad I did not pick her up because knowing me and my mouth I would not have had it shut. I would have went off! This little boy is 2 yrs older than her too. Just gets me that they knew he had these tendencies and only suspended him for 1 day. They can not descriminate against medically challenged children. Okay. Wth.. He PUNCHED her! So needless to say I am not letting her go back there as she told the therapist that councels us for family counceling that she does not feel safe. Veiw it how ya want but she is not going back. One thing I can provide for her is that much. So yea. Tonight she lost her first 2 teeth! TWO! OMG my baby is growing right up on me! She has the total redneck missing teeth going on right now! lol. I should put her in overalls mess her hair up and pretend their was a tornado and take her picture! LOL!. So yep. Oh I also am enrolling her in soccer tomorrow. She is so excited to be playing. If you guys want to know how it goes I will post about it! :)
Alexus: She is going to be 4 in a couple weeks. I can't believe it is around the corner. She is so excited about her birthday this year. We have it marked on the calendar and everyday we mark another off. We are also moving her to a new center on thursday and I have never seen this child so excited! She is getting her afo's for her legs soon to help with her muscles. We are also done with therapy for her sensory issues. We are hoping to get recertified as it helped ALOT! She loves doing anything genesis does right now.
A side note about her birthday coming up. It is a bit emotional as I am having it at the same facitility where I announced to some people that i was pregnant with Angel Robert. The exact day is the same I found out too. Yes for those that are scratching their heads. I am a dates person. ;) Lately its really getting me too. I am not sure if it is because of all the stuff that we are going over in school or what. His loss date is coming soon too.. So i ususally go through a few boxes of kleenexs then. I love seeing my children playing outside and wish i could see him playing with them. I see other little boys with their daddy's at school where the girls go or just places and I try to keep it in check but some days nope. The girls just had their pictures done and I feel such an emptiness there. I know my family is not complete either. One of these days it will be. Just not right now! :)
My mom had a knee replacement done at the beginning of the month so I am missing a big huge part of my support system. She really means the world to me. My fil is awesome too but just not momma.. kwim.
Where to begin with kenadie?! Hmmm.. well I was going to post about her leg biopsy stuff. But lets jump to the big guns. Kenadie had some bw done 1 wk ago this past friday and we found out she has an immunodeficency disease. So for those wondering her immune system army is almost gone. Something in her body is eating it up and spitting it out. lol. On a serious note.. There is not a cure. Her heart knocks her out for alot of the treatments. We do more bw tomorrow to help us find out what else is going on with her.
Post will be continued.. gotta get kids to bed.