What now?

We snapped into action the next day, I need to try and fix things, not sit and mope. I moved her 529 account to E since we knew she wouldn’t need money for college and 529 funds are strict on how they can be spent. Scott emailed the stem cell study at Duke again to say on their radar. I looked into what other doctors or clinics were out there, was there a doctor or hospital who was doing something better than others, didn’t seem like it for CP, Duke is on the top of the list. We immediately called Dr. Z and asked for a referral to Duke since they had a CP clinic and we want to be on their radar for stem cell stuff. We decided to wait on tattoos, we did not want to screw up an opportunities and to donate blood you can’t have gotten a tattoo in 6 months, don’t want to risk anything.  

We decided that we are going to treat C as if we did not see those MRI scans. We are NOT going to sit back and just make her comfortable. We are going to keep pushing her like we were before that appointment. She is going to have PT and Developmental therapy every week… and speaking of PT we wanted to change therapists, the current one knows her stuff but isn’t the best fit. It was very hard to find her though and our CDSA person warned us that once we jump we can’t go back to her. We needed new ear molds but were going to still use the hearing aids, more stimulation the better. We scheduled an ophthalmologist appointment with the best person in the area, which is needed before you can start vision therapy. We applied for Cap-C, because we have been told we probably won’t get approved  because she is a baby, we just applied separately for Medicaid and to be labeled disabled officially.

People keep saying to me “I don’t know how you are so collected” since I don’t break down when talking to them. When I verbally talk about it there is a 50/50 chance I will cry. When I write it, there is a 20% chance I will cry. And some of the stuff I have cried enough about it that there are no tears allocated for that any more. It is what it is. All we can do it keep pushing her, do the homework, try to make her feel included, try to prove Dr. Z wrong. It really fucking sucks. It does. And I know it will get harder as she goes from being a baby to missing more milestones. What also makes it suck more is she is so damn cute and she looks so much like me. I know that will make it harder as she gets bigger as well. To think what would she be like if this didn’t happen. One of the places I looked into is doing a review on her case to see if there is any malpractice. I think that might make it even harder to deal with if they find it to be the case. That she could have been our dream of C if someone did their job right. So we will see what happens, there are a few clear things/times that it could have happened. And others have told my story to their doctors who have been shocked that I wasn’t sent to be monitored when I said she wasn’t moving as much as 37 weeks, that they let me sit at the hospital so long before cutting her out, or that they let he not breath for 2 minutes and then struggle for an hour after birth. Any or none of those could have caused it. But what good will it do to have someone to blame, it will make it not happen to someone else, it might help financially with all the bills, but it won’t make C be the C she was supposed to be and would have been growing inside of me up until the injury.

But SHE SMILED! Three days after Dr. Z said she probably would never smile, she smiled big at funny sounds. And it wasn’t a fluke. She did it a few times! And she still does it once in a while. Not all the time but she does it. And she is damn close to sitting, E didn’t sit until he was like 7 months old so she is now 5 and seems pretty close. So there are things she is doing to prove him wrong already.