Hard News

I have been debating on whether or not to post anything about this or not because on one hand, I just want to pretend like it's not there, but on the other hand, I want you all, who have been so lovingly praying for us and caring for us, to know the latest, as difficult as it may be.

We took Camille into our pediatrician on Friday because she hadn't been eating well since Wednesday, the day we switched her formula. It could have been that she didn't like the new taste of the formula, but I really didn't think so because she has not seemed to mind any of the other new ones that we tried. I also felt like her eating had been getting progressively worse even before we switched to the Elecare, and on Friday, it was bad. I could only get her to eat around 2 ounces in 12 hours. So I first called the GI office, and they immediately wanted me to take Camille into our pediatrician's office to make sure she wasn't sick, dehydrated, etc.

Jason came along this time because I get so tired of having to take Camille alone and explaining everything by myself. By the time we made it back to the exam room, Camille was screaming her head off, which is not unusual, but our pedi had never seen her quite like that. He started examining her, and then kept asking about her irritability. I kept telling him that we were not there because she is irritable--we have gotten pretty used to that, and are hoping this new formula will help with some of that. We were there because she wasn't eating, but he didn't offer much on that, just that she would get used to the new formula and likely start eating better in a couple of days.

What he kept returning to was her irritability. So finally, Jason asked him, "If the irritability (screaming, arching her back, stiffening, etc.) is not related to GI issues, then what else could it be?" Our pediatrician got this sympathetic look on his face and said that he wasn't going to go there, but since Jason asked, he would tell us his new concerns. He said that when he had examined Camille that day, he noticed that she was really stiff, and had some hypertonia (increased muscle tone). That is almost always only associated with cerebral palsy. Plus, he added, that a lot of CP babies and children are hyper-irritable, and so those two things are now making him concerned about her having CP.

I have to tell you that I felt like the bottom of the floor fell out at the moment, and I felt like I was falling into a very deep hole. I couldn't believe this. I had noticed her stiffness back in the NICU, and had asked our pediatrician on 2 separate occasions at 2 separate appointments if he thought she was too stiff. He had told me about the association with stiffness and CP, but then when he examined her, he said that he did not think she was too stiff, and that I did not need to be worried about CP at this time. But of course, I still worried. I looked it up on the Internet and worried some more. I even called the Nurse Practitioner who cared for Camille in the NICU, and asked her if she thought Camille could have CP, and she said that she did not think that Camille did. Our pediatrician said on Friday that he had just noticed Camille's stiffness during this appointment, and coupled with her other symptoms, he was now concerned. He made it clear that he wasn't diagnosing her with anything, just noting this new concern.

So I then said something about the stiffness and a genetic syndrome, and he replied, "Well, she 100% has some sort of genetic syndrome. I now have no doubt about that." Excuse me? What? I sunk a little deeper into that hole. What happened to "she may have something genetic, and may not?" What happened to "as long as her head grows, she may likely be just fine?" He said that with her growth failure before and after birth, along with her head size, then he now thinks it absolutely has to be something genetic.

And then came the million dollar question. With my head spinning from all of this, I said, "So she could have cerebral palsy AND a genetic syndrome?" He simply replied, "Yes, she could."

This was just absolutely, incredibly, overwhelmingly unbelievable to me. Cerebral palsy affects motor capability, but doesn't necessarily affect mental capability. Most genetic syndromes, at least those that are associated with things that Camille has, affect mental capability, but not necessarily motor capability. But with CP and a genetic syndrome, she could have diminished capability in both areas.

I went on to ask if the stiffness could be related to something else, like a genetic condition, not necessarily CP. I should have asked if it could be related to low amniotic fluid levels in pregnancy because I have actually heard that, but I didn't think to ask about that at the time. He basically said that hypertonia is almost always "brain related" meaning that if it is present, there is usually something abnormal going on in the brain.

I actually handled myself pretty well in the office. Then I got into the car and lost it. It was pouring down rain, and so I was just driving around in the rain, crying, and thinking about how truly unbelievable this was. How truly unfair this was. How truly heartbreaking this was.

All of these random, crazy, depressing thoughts just kept bombarding me. That I'll never get to work on my Ph.D. as I had hoped. That Henry may never get to run around in the backyard with his little sister. That our lives will be an endless parade of appointments and procedures and medications and equipment.

But then I realized that once again, I was losing Camille in all of this. I was thinking about how all of this would affect me, and Jason, and Henry, and my mom and dad, and not thinking about Camille. Not thinking the thought that Jason and I have tried to make our central thought in all of this: She is a blessing, and we love her. No matter what. She is who God made her to be, and whatever that is, it will be good. No matter what. Cerebral palsy doesn't change that. The rarest, most horrific sounding genetic syndrome doesn't change that. Nothing changes that.

Of course I am hoping and praying that Camille does not have CP. I am hoping and praying that the geneticist doesn't tell us that she has something even worse than CP. It has been made quite clear now that she is going to have some level of special needs--we just don't know exactly what those are yet. And so, all I can do now is continue to pray and to hope. And I ask that you do the same, as you have been all along.