Our second doctor's appointment in July was with the CP Clinic. This is a 2 hour appointment where we see a nurse, a Physiatrist, a Physical Therapist, a Dietitian, a Social Worker, an Occupational Therapist and anyone else who happens to have time to stop by. OK, that last part isn't true, but it sure feels that way when we are there.
The main purpose of the appointment was to follow up on the Botox and Serial Casting. I was a bit nervous that Dr. V would want to do casting again. It was a lot of hassle for us with very little progress so I was not thrilled with that idea. I figured she would at least want to increase Emily's Baclofen (the medicine that is supposed to help relax her muscles). I also wanted to talk to her about the issues we have been having with Emily's AFO's (ankle foot orthotic). Plus I have some concerns about Emily's hands. She has Benik hand splints, but I wondered if she needed a different splint to wear at night to help her to keep her thumbs out. Her hands seem to be getting tighter and tighter.
First, let me back up a bit and talk about Emily's AFO's. When she finished casting, she got new AFO's. She hated wearing them. She managed to get her feet out them. She also let us know several times that her feet hurt while wearing them (we figured this out by asking yes and no questions and watching her facial expressions). The original pair of orthotics were at an angle that stretched her foot too much (they would have worked if we had actually made good progress with casting, but I digress...). So they were returned and a new pair was ordered. The PT that did Emily's casting gave me very specific instructions for how the new AFO's should be set. Emily's left foot is not as flexible as her right, so they had to be set at different angles in order to get her used to wearing them. She also had night stretch orthotics that could be adjusted to different angles so she could gain some range of motion. That was the theory anyway...
These are her new, new orthotics. Of course, we stuck with purple straps since my girl likes purple! We chose the butterfly pattern on the back just for fun. You can see the layer of white on the bottom. That is how they make both feet level on the floor even though each foot is at a different angle. It also makes them impossible to fit in any kind of shoe, but that is another story. They are actually two separate pieces. There is a small "boot" that fits over her foot and then the back piece that straps around her calf and ankle. It has taken some time to get used to putting them on her. She doesn't seem to be in pain wearing them, but she still manages to get her feet out of them. *sigh*
These are the night stretch AFO's. The straps that cross in the front determine the angle of the orthotic and how much it stretches her. Emily is not a fan of these orthotics either. She has worn them only a few times and has managed to get her foot out every time. The orthotist and I talked about trying a new kind of orthotic, because we both feel like we are at our wits end. So I planned to talk to Dr. V about it.
Well, Dr. V didn't waste any time when she came to the appointment. She said she was very disappointed with the botox and casting. She had hoped for better results. She is greatly concerned about the tightness in Emily's legs and heels. She decided to increase her dose of Baclofen to see if that will help. She also wants to refer us to an orthopedic surgeon. She doesn't think any kind of AFO will help Emily at this point. She feels that surgery may be the only option to get Emily's feet in the proper position to allow standing and weight bearing. To be honest, I don't remember very much after that. It is very hard to listen when you are saying to yourself: "did she just say SURGERY? SURGERY!?!". This was not the news that I wanted to hear - not even close! She could tell by the look on my face and tried to be very reassuring. It didn't do anything to stop the panic I was feeling. I knew with CP, that there was a good chance that surgery would be in Emily's future, but I never expected it to come at such a young age.
We have an appointment with the orthopedic surgeon in September, so we will know more then. I am told that he is very conservative. He is the head of the department so he is very good at what he does. Those are good things, but if given the choice, I would rather not meet him at all. In the meantime, I will do my best not to let my imagination run wild about it.
After the 2 hour appointment ended and my head was still spinning, we had a couple more stops before we could go home. Emily had her hips x-rayed. I was happy to find out that they look good. She also had some blood work to check Vitamin D, Calcium and a few other things. I believe all those tests came back fine as well.
We have an appointment next week with OT/PT to have her hands measured for splints. Somehow it doesn't seem fair that one appointment leads to even more appointments, but that is how it goes sometimes!
All in all, the appointment went well. I was able to get some questions answered - though I certainly didn't like all of the answers. Dr. V is very good at what she does, so I feel confident that she knows what she is talking about. More than anything, I trust that God is in control. He is not caught off guard. He knows exactly what Emily needs. So I will put my trust in Him and take things one step at a time.