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.
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7 comments:
Guilty as charged. I hope you know I'm here for you. I wish my work weren't so busy right now. With that and Justin in school, we just can't seem to stay on top of things. But I need to be better about keeping in touch with you. Take care and let us know what you need help with for your trip.
P.S. Your "about me" hasn't been updated recently. ;-)
AB I could not ask more of you. You were there for me when no one else other than my parents were there. I mean you had just given birth and came up to the hossy for us. We understand everyone leads a busy life. But I am sure you know who I am talking about in my blog. I can't count on my one hand the number of extended family that has reached out to us. Trust me I would not say no to help or encouragement. :) We are leaving on tuesday and I have all lined up at the minute. I might need your help to spread the word of our upcoming fundraiser though. :)
btw i updated it too! no more ttc now we will set the journey to foster to adopt in 2.5yrs. Lots to do such as graduate, get a bigger home, and get kenadie's stuff in line as well as alexus. then they can have a brother when i am Alisha Hancock R.N.
I know and I have really tried to be there, but just been a little sidelined by the day-to-day lately. I will help where I can, just say the word!
I want to do some shin-kicking for you!
Hon, you are doing awesome. Even on those crap days. You ALWAYS advocate for your kids. I think that's a top priority. But I do understand the "pretend to be normal" feeling. Then I look at my cell phone which reads like the MD yellow pages and get reminded yet again that we will never be "normal." But the love for my kids doesn't understand that label.
Are you still heading up this way later in the year? We don't have a cardiologist (just CT Surgeon), but I could get you the info for our GI doc if you want to chat.
thanks tasha.. i appreciate it. i agree.. my phone has more md numbers than friends and family almost! lol.
we do plan on coming up. we have to see what cleveland says. we need the genetist to give his acknowledgements so we can get paid for! ;)
umm btw.. i want to come up for vacation.. for a weekend. hopefully it pans out!
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