Hello all. So here is the update. I took K to the pedi on friday and you know it is never good when she comes out and says I am putting you as the last appt today.. I need the time to talk with you. F***! So we go weigh.. 16.10lbs..25.5 inches.. and can't remember head stuff. She comes in and does her assessment. Then says that she is a bit concerned as k is going backwards on some developmental stuff instead of forwards. Eh whatever. Then says.. well dr t called me. Says he is concerned that K's stomach has not grown in mths. UMM COME AGAIN?! Same man that came out of the OR and told me all went well and he does not understand why she is having motility problems and does not understand why we are seeing flashes of blood? F him and his crap. Btw my pedi is pissed bc he passed the damn buck on her AGAIN! A little history.. when she had her major surgery.. he went on vacation that next day and left her to do all the ICU work and everything. Boy she was fired up when she found out I did not know! She casually states yeah he sent me a letter stating his concern about her stomach not growing. Then called her after the fax. Beautiful. (not!) So both her and I kind of stared at each other in disbelief. Then we discussed our options. GI here in oklahoma sucks monkey balls so NO that is not an option as they have already consulted on her. Then I mentioned the feeding programs in Texas and she says Alisha you do the research and I will back you up. Okay so I am/did. I have found many programs. But I want to know they have a good heart dept too just incase we are in need of caridac help while we are there. Now most of these programs are 6-8wks long. And I will practically have to move to another state for acouple months to go and be with her. I dont know what I am going to do. I am going to bounce some ideas off my pedi.. But my daughter comes first and foremost. I have emailed NC, Florida, and Cali thus far. I am also going to email Phili and Utah.
Now the emotional part. Right now I feel like I am letting her down. I am supposed to provide the best and stuff and right now I just feel like I am not cutting it. I dont know how i am going to choose between my job and her care. I am sure it will all work out but right now I just dont know. Her SSI is supposed to go through but when I have no idea it is the goverment. So you never know how that is going to go.
I am supposed to be taking her to the test tomorrow and to the pedi but I know if i call my boss then I am screwed. Why why why?!?????!!!!
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5 comments:
Alisha, I am so sorry that you have to put up with all this passing-the-buck, stupid, political, bureaucratic red-tape! Uhhhggggg, I am so frustrated and mad for you, and poor lil Ms K!
I cannot believe that he didn't inform you that her STOMACH ISNT GROWING! Totally ridiculous.
I know it must be just about impossible to juggle work, home, husband, kids, and living in and out of hospitals, but so far you're doing an amazing job. You've made it 7 months, I know you can keep going! Just keep it up, one day, one hour at a time. I am confident that God will provide for you and your family, whatever happens.
PS: If you end up in NC, you can stay with us! We're only 10 minutes from Duke University!
Alisha, I Know I haven't been writing much but I check in here every day to see you you and little ms. K are. Hang in there. It must be incredibly stressful and your heart must be so full. Just remember there is a plan for you. Live each day the best you can and at the end of the day if you can say you did your best that is all anyone should ask of you. Big (((HUGS))). Just wanted you to know I am here reading and praying even if I am not always writing.(Michael and Akaash's mom)
Oh sweetie! I wish there was something I could say or do to help.
Just please do not feel like you are letting Ms K down. It is so the opposite. You are doing an amazing job and have given her more than most. You are super strong and you will persevere.
Hang in there hon! HUGS and prayers!
You are such a strong mommy! When she is a stubborn teenager you can remind her all that you have done for her. :)
You are such a strong mommy! When she is a stubborn teenager you can remind her all that you have done for her. :)
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