PT canceled

We woke up this morning and, as we were eating breakfast I heard the home phone ring. I ran to get it, but I missed the call. I knew what it was. No one calls our home phone. The physical therapy was canceled. Ugh! I am frustrated, but the physical therapist had to cancel because her mother is in the hospital. We re-scheduled for three weeks from now. Grrrr. At least we have occupational therapy next week to look forward to.

Waiting

We have been waiting for over a month to get in to see the physical therapist and the occupational therapist. Both of the first appointments are two hours. I can't imagine what we will do that whole time, but I am sure it will be amazing. The PT is tomorrow. I know Cecilia will get fitted for her AFO (Ankle Foot Orthoses) at this appointment. I am really curious about how this will help her.

One of the symptoms that Dr. Steve asked us about and pointed out at our first appointment was if Cecilia kept her right hand in a fist a lot. We really hadn't noticed it. She definitely was left dominant, but we weren't sure. This is something that I pay attention to all the time now. The first week or so I was surprised how much I noticed her hand in a fist, but it wasn't all the time. As the weeks have passed I have noticed her starting to do more with her right hand. I am hoping that the occupational therapist will give us lots of feedback about how great her right hand is. It's so incredible how you can be looking at the big picture that is your child's life, but when they have any challenge, sickness(even the sniffles) or something not quite right you pay attention to every little detail. We get a little excited every time she uses her right hand. The fact that she can pick up a small piece of ice with her right hand and put it in her mouth is very reassuring to me.

The initial diagnosis was definitely hard to hear, but I never had any doubts about the diagnosis. We have cried and felt fortunate and happy and everything in between. It really could be so much worse and we can handle this. This is what Cecilia has to deal with, and our role is to make sure she has all the right people to help her.

The MRI will most likely confirm the cerebral palsy. There is a 20% chance that we won't be able to see the damage, but it won't mean that this isn't Cecilia's diagnosis.

I think right now I am more worried about the general anesthetic that she has to have in order to be still for MRI. Maybe that is just somewhere to put my worry for now.

MRI

The MRI went very smoothly. The nurse and anesthesiologist took Cecilia back. We weren't part of any of the gas or IV. When we were able to go back, she was just waking up. Her little face was all red from the tape that had been on her face. She was a little groggy at first, but as soon as they gave her a juice box she was back to herself. Within about 15 minutes she was cleared to be discharged. No vomiting or nausea the rest of the day.

Results

Dr. Steve called the next day. I wasn't expecting to hear from him so soon. I don't feel like I was prepared. I wanted to have some questions to ask him. He said that you could see the damage and it was what he was expecting. Simple and to the point. I definitely have more questions, but we will see him again in a few months. I will have a better understanding of Cecilia's symptoms through the physical therapy and occupational therapy. Watch out Dr. Steve. I am going to have a million questions for you by then.

Diagnosis

I am guessing, like anyone starting a blog, you don't know where to begin. I'm just going to dive right in. We have an incredible 17-month- old little girl named Cecilia.

Pretty early on I noticed that Cecilia favored her left hand. I research everything, so I read a few articles. I found out that babies can show a preference as early as 6 or 9 months, but they should be relatively ambidextrous until the age of 2 or 3. As she got older she hit all her developmental milestones towards the end of the age range, but always made it. She was happy and healthy and no one suspected anything was wrong.

Once Cecilia started crawling she did what we called her pirate crawl. She held her right leg stiff to the side. After crawling for a month or so she did crawl in a more traditional way. At her 12-month-appointment she was just starting to walk holding our hands. Just before her 15-month-appointment she took her first steps. Woohoo! First steps are so exciting.

As she started walking more she kept her right leg stiff, which we made sure to point out to her pediatrician. After some discussion during her appointment we were going to be sent to physical therapy and a dietician. Oh, I didn't mention she is a peanut too. She fell off the growth chart a few months ago, but we are not big people and she eats well so, whatever.

When the hospital called to schedule the appointments they said she would be seeing a physiatrist. I had never heard of this kind of doctor before. Here is a definition if you are interested. http://www.aapmr.org/condtreat/what.htm

It took us a month to get in to see Dr. Steve, the physiatrist. We saw him on the afternoon of September 9th. Dr. Steve examined Cecilia for a few minutes. He said to us "did your pediatrician talk to you about why she sent you." Uh, no. "There is a very broad spectrum, but Cecilia has very mild cerebral palsy."

My reaction probably seemed unemotional. I need information. She will need to have an MRI, wear a brace on her right foot, physical therapy, occupational therapy. It is a lot to take in when you go in to a doctor's office thinking that something might be off, but you can't imagine getting a diagnosis that sounds so scary.

We feel so lucky that the only apparent damage is a mild mobility issue. It won't get worse. We know what we are facing now and we can deal with it.

So, next step MRI.