Saturday, May 10, 2014

CP Clinic

Yesterday, I took Bryce to the new Cerebral Palsy Clinic at Phoenix Children's Hospital.  The Orthopedic Surgeon that has been seeing our children over the past 5+ years started this clinic because he wanted to be able to give children better care, in other words, be able to spend more time with each individual child then he is able to in the clinic at CRS.  This is where we have seen him in the past and honestly I dreaded every appointment with the ortho clinic there, so I was excited to check out the new clinic at PCH.

Since it was our first visit there, and Bryce needed quite a few "upgrades"  we ended up being there a little over 4 hours.  Usually, I would not be happy about spending that much time for one appointment, but today was different.  Today, all but about 1/2 hour of that time was actually productive.  With the help of the PT/OT team there, we were able to get him fitted and casted for much needed new AFO's and hand splints.  We also got scrips for other equipment that he has been needing at home.  With children like Bryce and Annalise whose needs/abilities vary so much and so often, we need people who understand their needs and who know how to deal with insurance and other companies to help us get the things that they need.  Today I honestly felt like I was able to work with some of these people.  I feel like they listened to me and took the time to work with/get to know Bryce a little better so that they could know what he needed.  It was a very nice change.

 After that, Bryce got x-rays again of his hips which he does every 6 months because of  the hip issues he has.  This was the first time that Bryce did not cry, due to fear, during his x-rays.  I'm so proud of my brave boy!

Then it came time to meet with the doctor.  He and his nurse came in, sat down, and talked with us while checking Bryce over for about 30 minutes.  30 minutes!  I have never had an orthopedic doctor spend more than about 5 minutes with us.  The only bad part was the news that he had for us.  Bryce's hips have gotten bad enough that he is going to need complete hip surgery within the next 6 months to a year.  :(  We have known for a long time that this day would eventually come, but I really wasn't ready for it now.  I guess I never really would have been ready for it though, so it is what it is and we will think about our options, pray about it, and make some decisions.  The doctor did say that Bryce's case was one of the best he has seen as far as the amount of time that the adductor lengthening surgery  kept Bryce from needing full hip surgery.  The plus about that is that the older Bryce is when he receives the hip surgery, the less likely he will be to need another one later in life.  At the age of 8, which is about where Bryce will be when he has this surgery, there is only about a 5-10% chance that he will need it again later.  I hope and pray that he will be one of the 90-95% that will not.

It was a very long day, especially for Bryce, but he did so well!  When we were finished though, he was very ready to get out of there.  So while Bryce was briefly mesmerized by the dancing flower lights on the wall, I made a quick call to be sure our older boys had made it home from school and that they and their dad had begun their trip to the Father and son's camp outing.  I then grabbed some lunch at the cafeteria (it was 3:45 by then after all), and headed back to the Ryan House with it where we will be staying for the weekend.  It was so wonderful to only have to drive for about 5 minutes to get "home" instead of our usual hour and then to have many people here to care for Bryce and Annalise so that I could go into my room and process everything that had happened at the clinic visit.   We are so very blessed to have this home so close to us.  The third one in the US is being built now and my hope and prayer is that someday there will be respite homes like Ryan House throughout the United States. 

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