Symi

Well the other day we had an appointment with our Pediatrician to discuss what happened with Symi at Primary's and to discuss future plans.

When all was done, I crawled into my car and cried. It wasn't the news that I wanted to hear. It wasn't where I thought we were going.

Our Dr said that the previous day he had been on the phone with Primary's for over an hour. Discussing everything that went on and deciding what they wanted to do for her future. When we got there the Dr really didn't smile, but was straight forward and very concerned. He told us that the only reason why we got released from Primary's was because she started eating on her own. And that they knew that we just wanted to go home. They diagnosed something for liability reasons and sent us home with a "plan" as well. But as far as they knew, they had no idea what was really wrong with her. Our Dr described it as us covering up something with a BIG bandaid. He told me that he expecting the "episodes" to come back. And that the Dr's at Primary's expected us to come back too. They are all stunned and extremely puzzled by this little girl. No one knows what is truly wrong or how to help her. They were glad to see that she responded well to the formula and all the different medications.

When we went to see the Dr she was starting into another "episode" of not eating. We were going on 7 hours. Our Dr informed us that if she didn't start eating by 10 hours to take her back to Primary's ER and start all over again. I asked him," Are we just suppose to keep this girl alive through ER visits with IV's and feeding tubes!?" He said," Yes if that's what it takes we'll do it." The Dr informed me that it's now all in my hands. To do whatever it takes to get calories, fluids, and regular bowel movements for this little girl. He told me that our next step that was going to be taken at Primary's was a head CT scan. He suggested that if they do that, that they do a full body CT scan instead. So far they have no leads. No where to turn for testing. And are hoping that she will continue to grow and develop like a normal child.

So these last few days I've just been trying to swallow this big chuck that I've been given to chew. I haven't wanted to post because it's been really hard for me to take. The reality is kind of hard.

I was so grateful when she took a bottle shortly after we returned home. I am even more grateful that she's continued to eat since that day. Each day is so different. One day she'll be normal. Smiley, giggly, super active, eating and sleeping well. Then it's like someone turned on a light switch and we're back to the fussy, uncomfortable, not sleeping, and ornery baby. Sometimes she'll just scream and scream and scream. It's hard to just lay her in her bed, but she arches her back so hard that it's nearly impossible to hold her.

My house is a mess. I have dishes piled like a mountain across my counter. Laundry that really needs to be done. (Dane keeps asking if I've done this batch or that batch. Finally he said today, Honey, I'm trying to be patient, but this is the 3rd day that I've had to wear this shirt. Could you please wash some today so that I can wear a clean on tomorrow?) You could eat food off the floor, only because it's has spilled food and crumbs all over. The Relief Society has offered to make meals for me ever since we've arrived home. So far we've gotten one. That was the only thing I asked for them to help me with. I didn't ask them to alter their lives and come stay with me every sleepless night. Sitting up with a fussy baby, and restless toddler. I didn't ask them to come and deep clean my house. I didn't ask them to take Ben for a few hours in a day to give him someone to play with and allow me a nap. I didn't ask them for the world. And they have already told me that my situation doesn't allow them to bring me anymore meals unless it's an emergency. Thanks. It would be nice if someone could sit with my kids for 15 mins. while I shower for the first time this week.

I just need to vent. Cry. Pick myself back up and try to tackle this all alone yet again. Dane is back to working 2 full-time jobs. Trying to function on even less sleep and keep a paycheck coming for all the added expenditures.

After our Dr's visit I went to the WIC office to pick up Symi's specialty formula. The lady that was over our "case" told me that they weren't going to give us the formula. That she didn't have an extreme enough condition to warrant her getting this specific formula. I wanted to kindly place my hands around her neck and strangle her!!! That was the last thing I needed to hear right then. I came undone. I said,"What does it take to warrant such a release for the formula? Does a baby have to go through a week of IV treatment. With a feeding tube shoved down her nose making her eat while she screams and cries! Does a baby have to have a diagnosis to have such a formula avaiable when right now it's the only thing keeping her alive!? What more do you guys want in order for me to get the formula!??!?!? My right arm!" I was a little upset. I was really mad. Finally she said,"Well you did finish all the paperwork. I'll see if I can't send a few of them home with you." AAAAAAAHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! SO finally I walked away with a some more formula. That I have to get a Dr's release everytime I go or else Symi has nothing to eat. Great people. Just great.

My nerves are shot. My baby still cries. And I only want her to be happy and healthy. I guess it's a lot to ask for right now.