clinic update and some ramblings

ello everyone. What a week it has been. So clinic on monday was eventful. Turns out no one has been communicating with our cardiologist in texas. I love when they say oh yeah i will send them a letter and it never gets done. erhh. So we had a sedated echo and she did not react well to the sedation. Passing out, thrashing, vomitting, and just body crazyness. We know she can't handle that sedation anymore. Tuesday we went to gi and well he was just irritating. One minute he is like i want the tube out the next he doesnt. Then ended the appt with no. On the way home we all were tired so it was a very long trip. Now we go to cleveland where i pray we get an answer. So I can shut her gi up! He kept saying well if they have anything to offer which they wont. Damn dont dash my hopes! Then says well you never mentioned her heart issues before. Um hello what system are you again?! GI!!!
So yeah. I am not banking my 10 cents that i have in my bank account on getting one though. I am just getting wore out on everything. For 18 months now we have battled. I want to say I am done. But when can you say that?! When is enough enough? Sometimes I want to kick the nurses out of my house, tell the docs we will see them at checkups only as if she was a normal child, and say to hell with it. But I know she has issues. She shows her little kester and lets me know mom.. I need my nurse. Per say her temp was 96.3 a bit ago. Her nurse is pretty new to our case so she gets in a frenzy each time we have a low or a high. Kinda funny.. But she will calm down soon.
If you can't tell I am struggling personally. I think this whole control freak is starting to kick my butt. I have always been that control freak. Since my mom had her stroke and I became boss! :) Learning that some things I can't help or alter gets to me. I am a planner by all means. Kenadie is slowly teaching me mom after 26yrs you have to change. Like it or not! Trust me it is going out kicking and screaming all the way!
Then I dont know how to handle my family. I would love for them to be more supportive. Come see her, call, email, and do whatever. We can corral around people when they have their issues. I have had an issue i need family support for 18mths now. I dont know if they are scared or what but trust me you WONT catch anything. Its genetic with her my friends.
I also think I am slowly building anger against some of those issues too. I have an i dont care attitude right now with certain things. Like since they weren't their for me tough shit type of thing. Just gets me!
Btw we are going to try and get the diva in swim classes. I can't wait. Genesis will be going to big girl swim lessons and so will alexus. :)

Ah speaking of ms alexus.. we went to her ortho appt on wednesday morning and well crap. Her physical therapist said she needed serial casting for her legs with botox injections. The dr said he wants an mri bc of the muscle tightness patterns. He also wants her back in the neuros office. So we go on monday there. I am nervous as to what he might have to say. Right now she has sensory disorder. We can't get the diagnosis for autism till we see the proper drs and get the dx but that is what the ptis leaning to.. I try not to think about this. But when she is so ridgid it is unbearable to almost live with her.. Its so hard. I want to just go cry. I am a good mother but somedays she just makes me feel like I do a crap job. And the next person that says it is bc i am gone too much I will kick them in their shins or accidentaly pour my cappy coffee on them! Its not all me! She has always been this way! Yes we do family therapy, individual counceling, and all that jazz. We do everything we can for her too! Some days I just feel inadequate.


Another thing.. My angel son's 2nd heavenly birthday will be on tuesday. And it just sucks right now. The pain does get better but you know.. Nothing will replace the son I lost! I miss him so much. I often wonder what he would be doing right now. Would he be going into his terrible two's? Would he be clingy with mommy or daddy? Would he be special needs? The list goes on. So on tuesday we will be celebrating his birthday in our own fashion. I will need some kleenex though.

Good morning.... Angel thoughts.

Morning. Just a quick post before class starts. I am really missing my angel this morning. I look at kenadie and see what she does. She is a loving child with such spirit. I wonder what he would be doing now. Angel will be 2yro on may 4th. Would he be having his temper tantrums? Always wanting mom or would he be a daddy's boy? Sunday is easter. I would have gotten him a nice easter outfit. They have some really cute ones. Last night I had one of those nights where I just thought about my baby.