So Much More

I think that Jacie is worn out! She had 4 physical therapy sessions today, 3 occupational therapies and 1 recreational therapy- then we went to the zoo. It was a full day and now she is lying in bed watching a movie. I see her eyes drifting shut. It is no wonder that she is tired. They constantly are in here through the night. I find it so difficult to understand why they insist on waking her every 2 hours. She is on no medication or machines. Just good old fashioned physical therapy! Perhaps tonight they will figure out that the two of us need sleep worse than they need to check her... I am not holding my breathe.

I read the last post and had to laugh at my constant misuse of words- I was tired.

Yesterday was a difficult day. All of the therapists and doctors got together for a round table discussion about Jacie. It was actually difficult for me to hear so many labels being tossed around casually. I know that it sounds absurd but I was seriously affected when the doctor talked about her head shape and how he noticed that it was abnormal. He had a name for it but I did not catch it. What?!? I had never noticed that her head had a different shape. She is such a beautiful child but I have to admit, I spent more time touching her head today- trying to find where it was lacking than I ever have before.

They also talked about how Jacie's feet might break down because her mother does not allow children (or anyone) to wear shoes in the house. Really?!!! That was before they brought up another issue that I couldn't believe was even up for debate. By the end of the whole thing, I was totally freaked out. I have been talking myself off of the ledge since.

Here is my consensus. They have made their educated deductions about who Jacie is and what she needs off of the 2 hour time period that they spent with her. As much as they are right in some areas- they are wrong in others.

One of our main goals for Jacie is that she has normal, healthy childhood memories. If she can walk around barefoot in the summer- good! If she can walk without braces and gadgets, that's what we are going to do. I NEVER want her defined by her clubfeet- there is so much more to life. So I fought back a little. I said, "If Jacie needs these AFOs to walk, then we will get them. Right now, I know that she can walk without them. She was walking well before she was casted. That's what we want."

Perhaps, I am wrong for forcing the hand but I have to say that Jacie is much more than a diagnosis. I am not into that kind of thinking. I have been struggling to get all of their descriptive words out of my head when it comes to her and remember that she is a beautiful child. Does she have an asymmetrical head? Truth? I can't see it. I doubt any of the rest of you can either. She is smart and articulate and able. She is spunky and charming. Is she clubfoot? Sure but she is so much more.

I was ready to jump ship yesterday. If it had not been for the physical therapist, I might have considered it. He is very good at what he does. He is trying to help Jacie to get a proper gait pattern. That is his job and he is really focused on it. Thank heavens. He is the reason that we remain here. I believe that he is just the person to jump start her. Then we will continue with outpatient therapy. I am looking forward to that.

The good thing that came out of the meeting is that we have gone from 4-6 weeks back to 2-3. I am excited for that news. I cannot wait to sleep in my own bed.

She did walk today. I have included pictures of it. She built a complete Lego set of 138 pieces and amazed the occupational therapist. She couldn't believe that Jacie had the concentration to spend an hour completing it. I am a little worried that she won't master the weight bearing on her left hip- it seems that she has never bore any on it...

Pray for her as this is very painful.

~Camo Pants