Many Questions

Following Monday’s appointment and post, I have received many questions. The thoughtful want to know how I’m doing, the curious want to know how I took Monday’s appointment so well, and the concerned want to know how Charlie’s doing.

First, I am doing alright. Admittedly, I hoped that Charlie was doing well enough that we could avoid the CP discussion. But, I am not shocked that it happened.

Although, I do have many new questions since I have had time to consider it. For example, is the cause of her speech and feeding delays purely oral aversion, is it CP related, or both? I need to read more so I can have my questions prepared for the next appointment.

Second, how did I handle the news so well? I knew a few months following Charlie’s discharge from the NICU that there was a motor issue. In the beginning, I did not receive a whole lot of support in addressing it. I was told to “wait and see” as I read the worried expressions of her health care providers. The approach was unsettling to me and I did my own research. After reading about many possibilities, Charlie’s symptoms rattled off like a textbook case.

At her next appointment, I out right asked her doctor about CP. I am not a medical expert but I knew something was happening with my baby and I wanted to talk about it. The doctor almost looked relieved that I brought it up. That is how the discussion started. Shortly thereafter, Charlie started seeing a developmental pediatrician and her PT was increased. I mostly went through the grieving process (yes, there was one) at that time.

So, no, I am not impervious to bad news. Nor, am I this incredibly strong person that rolls with every punch. I merely had a long period of time to adjust and prepare for Monday’s discussion. Really, the only thing different is that the issues Charlie has been dealing with have been given a name.

Finally, Charlie is doing well. As I said, she still laughs, smiles, cheers, plays, sings, and explores. However, she does get frustrated from time to time when she can’t do some of the things she would like such as standing independently. But so far, it is not a frequent event. I am hopeful that the AFOs will put an end to most of it.

For the most part, not much has changed for us. We continue to work on feeding, motor skills, and sensory play. I hope this turns out to be just another bump in the road. Yet, that is another thing that only time will tell.

Photo credit: Monica DeMariano

Photo credit: Monica DeMariano

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

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