Going to CHOP's CP Clinic was the BEST decision we have made regarding Jack's medical care. I cannot describe how great it was -- it's hard to put into words!

Jack was the best kid EVER that day. The car ride went smoothly, no traffic, found the hospital and parking area with ease....even had time to get a snack and sit for a little before the appointment.

First, we saw the OT and she feels Jack should be wearing a hard (custom made) splint on his right hand to sleep at night. She gave us specific stretches to help keep Jack's range of motion and was overall very informative! She said when we do Botox, Jack should have increased OT for a few weeks following in a hospital setting. So when we go for ST next week I will be asking about OT as well. I think Jack had a mini crush on the OT -- she even let Jack keep one of her balls for the rest of the visit!

The PT was next. We LOVED HIM!! Jack doesn't usually do well during rigorous physical examinations. He hates being stretched and measured and HATES lying down on exam tables. For some reason Jack was totally fine during the exam. They got a good look at Jack's muscles and he was showing off his skills and overall just charming the pants off everyone. The PT feels Jack should get Botox in his arm and legs. He feels we should get Jack his own walker (right now we're borrowing one). He suggested the same type of walker (a reverse K) but adding on a flat arm support for his right arm. He feels with that support Jack will be able to push off with his elbow and spend less time concentrating on holding on with his right hand. He said with a new walker Jack should "take off" and we'd "be in trouble" LOL LOL!!!

We then saw the ortho. Jack had an x-ray of his hips when we first arrived. The ortho pulled up his x-ray on the computer and said everything looks GREAT! He was a gentle man. A little quirky, but very nice and thorough. I asked his opinion on Jack's type of CP. I mentioned that he seems to have involvement in both legs and the label hemiplegia doesn't seem to fit perfectly. He said yes, Jack does have mild involvement in his left leg as well and he would consider Jack to have diplegia and hemiplegia or we could call it triplegia. It was great to have someone answer HONESTLY and not just go with the hemi label. The ortho then went on to lament about labels, and how it doesn't really matter what we call it and I reminded him that as a parent we wish to know EVERYTHING about our kids. I want terms. I want technical information, etc., etc. It was again NICE to have someone treat the parents as a part of the team. He was great and we plan on following up with CHOP's CP clinic every six months. We'll keep all of our specialists at Hershey except the ortho stuff. Anything ortho related we are going to go to CHOP.

The ST was last and Jack was spent by this time. He didn't 'perform' for her but I was able to ask some questions and get some input. She feels we should continue with a wide range of speech therapy. She feels we should concentrate on sound production. I told her Jack was great at making the "B" sound...so she said we should go throughout our day and concentrate on the letter B...and so on as he does have a few sounds he's consistent with. She also said we should continue to work on the concept of give and take. She was encouraged that Jack can repeat some words and word approximations and wasn't too, too concerned about his lack of consistency. Like the other week, he said truck but hasn't said it since. This morning he said Na na (for banana) but who knows if we'll get it tomorrow? She also explained a little more in detail how to use switches. We are set up with the lending library and can rent communication devices. She said we should rent the basic one button switch again (we had it for 6 weeks but had no idea what to DO with it). She explained it's not about motor skills (I was confused because why would Jack need to use a switch if he can point?) but she said there is something that needs to click for Jack on a very fundamental level. So we should not program the switch to say anything at this point. We should set up two switches with two choices behind them. Use things that Jack does NOT have words for yet. Let's say blocks and cups (two favorite toys these days). We would put one switch in front of the blocks and the other in front of the cups. Jack needs to physically make a selection by pressing the switch for the item he wants. It never really clicked until she explained it that way. She said we can't move on until we do this step...that this will help build a strong foundation of the concept of communication. Yes, Jack can press even the tiniest of buttons, yes, he can say some words, and yes, he can point. But using the switches aren't about any of those things (like I had originally been a little insulted because I thought Jack was too advanced for those)....but I now realize it's the physical act of making a choice that's important. Whew, sorry, that was LONG! I hope this makes sense!

We left with a great feeling -- and like I mentioned before I am SO GLAD we decided to go.