Work can be especially hard for me, mostly because I have too much time to think. Night shift was dreadful. I spent most of the night crying and researching. Researching what really, im not sure. I am conviced the Schiz moms and myself know more then the physicians and anything I will find on the internet. Dr google isnt going to tell me my babys future.
I havnt had the time to get her papers into disability, her research forms for the Welsh lab in Boston, or the application for a service dog. I need a good solid day of not having to do house work or watch Ari ( yea right ). Life's busy and stressful enough with a baby without adding that she has special needs. Even if she isnt showing it yet, I am a constant mess.
The topic of make-a-wish came up. Unfortunatly she has to be at least 2 and a half. Although I think its mostly for trips, which I would want her to be older anyhow.
I also think I need to look into some counseling or meds. I feel like I am losing my mind. Sometimes I feel like too, as stupid as this sounds, that Jesse somehow blames me. I mean, I feel responsible sometimes, I carried her. I must somehow been at fault right???
Arianna has to go for blood work this saturday. Its one of the worse things and im dreading it. We have to go three more times for her endocrinology blood work. There are 6 different orders and they can only take so much out at a time and you have to wait a certain amount of time to get more drawn.
The talk of having more kids is constantly thrown around. I would idealy like to wait until shes at least 2. I hear by 2 years old you will have a good idea of what her future will be like as far as what hardships she will face. I would feel incredably quilty not giving her all of my attention. I feel bad enough I am not able to be with her everyday. I think shes going to think the baby sitter is mom. Which I guess is completely rediculous.
They are also not sure if its a genetic condition. We go back in July to CHOP ( my favorite place ) to get results. There is so little know about it. Could be environmental, which kills me day to day wracking my brain on what I did the first month or two. What I could had breathed in or was it because I crossed my legs and she didnt get enough oxygen? Was it because I painted my nails and inhaled the remover? Was it because I didnt know I was pregnent until 8 weeks and I was cleaning and smoking and eating crap?
They dont know exactly what week of gestation it occurs in. It could have been an infection, but my CMV came back clear. I wasnt sick the entire time.
Could also be caused by a stroke. Which is what they initially thought thats what she had on the first U/S that showed the shadow.
Her medical records from Women and Babies said it could be mild Schizencephaly. Our neuro refers to it as it being very significant. They didnt even tell me Schiz was a possibility at the high risk doctor, even though it was in my chart that it could be. I am pretty upset about this. But I guess it doesnt make a difference now.
CHOP said chances of it happening again is 2 percent. That was at the first visit. Last visit, its going to depend on if it comes back as a genetic mutation. If it isnt, I am going to be even more depressed thinking I did something. If not, I am going to be so worried about having another baby. The genetic counselor said some genes have been identified to cause Schiz, but its the other type....I forget what it is. Also if that one causes the SOD they dont know either. Its all too confusing for me.
With any chance of it happening again im not sure what Jesse and I will decide. For me, its back and forth. I love Arianna no matter what and I would love my second if she had Schiz just the same. In that respect, doesnt matter. But, I know how devastated I am now. And what I went though hearing it and going through it day to day. Will Ari have a lot of disabilities later in life? I dont know, but I wouldnt want my babys to go through it, so knowing thats a possibility, I dont know if I would chose to have another. But, if it happens I get pregnant I wont be upset :)
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