A MUCH NEEDED UPDATE

I feel absolutely horrible that I have not updated PJ’s blog in so long. It’s been 16 months almost since my last blog post. But we have been so busy just living life. August 07, 2006 PJ’s brother Patric Thomas was born. He weight 6 lbs 4 oz. He was born around 1 am. He is a happy healthy 1 year old now. He loves running around & tormenting his big brother PJ, which he calls JJ right now. Pj has had a very hectic year as well. He just started going “Thomas crazy” last year. By his birthday/Christmas he had almost every Thomas train there was. We had an awesome Christmas last year. He got a super cool Cars bedroom set with a bed, toy bins, table & chairs. Then on his birthday he went to the doctor to get his shots, but he also was sick. He had his first double ear infection & was miserable. His nana baked him a yummy chocolate cake & he felt a lot better. Then in February we started a round of surgeries that we are about to finish up next week. On February 21st he had his first club foot surgery. We thought we had escaped this as a baby. We did serial casting from 6 days old until he was almost a year and finished off with releasing 4 toes and his heel cord. He did excellent in a Dennis Brown Bar and then moved down to just AFO’s for almost a year. Then last summer we found out PJ’s feet were seriously regressing & we basically unbraceable and uncastable. So we scheduled surgery as soon as possible, which wound up in February. He had a lateral column shortening, a posterior medial release, and 4 pins placed. He was casted in a long leg cast for 6 wks, then put in a short leg cast for 4 more. At the time of the 2nd casting we did the left foot. That was April 4, 2007. So for 6 wks he was in 1 long leg & one short leg. After we got the first shot leg cast off he was in only 1 short leg cast and he began walking again! We were so excited & didn’t know if he would be able to so quickly. Then 4 weeks later he got the short leg off & he was off again. But then on May 18th we went back to Shriner’s & PJ had a carpal wedge osteotomy on his right wrist. Dr. Gogola went in and removed a triangle shaped piece of bone from his wrist to allow it to wrist in a more nuetral position without losing any active movement he had. He wore a cast with a coban wrapping under for 4 wks. As soon as he got the cast off you could see the immediate difference in his wrist. It was much less flexed. Then on August 6th he had the same thing done to his left wrist as well as a humeral osteotomy on his upper left arm. It was a procedure where Dr. Gogola cut his humerous in 2 and physically rotated it to help with the pronation. Then it was reattached with a small metal place. The has been the most dramatic surgery yet. As soon as he came out of surgery you could see a difference with his elbow. Which happened to be in unintentional beneficiary of this surgery. It seemed like this small positional change freed up and loosened up his whole arm. All of a sudden while he was in that wrist cast, while laying down, he was raising his hand up to his face level, relaxing his elbow & dropping that hand down to touch his face. That the first time he purposely & actively touched his own face. We did have quite a bit of soreness & it seemed by far the hardest surgery to recover from, but it was a 2 level surgery. Finally, on October 10th we returned to Houston to have the humeral osteotomy done on the right arm, on which the wrist had already been done. Once we complete this surgery he will be able to bring his arms together at midline. That means gripping large & heavy toys, lifting things, bringing his hands together to clap! BUT the admissions nurse found an ear infection so the surgery was scrapped & we were sent home. A LOVELY 10 hr drive that day. And now we are creeping up on the rescheduled date. I’ve turned into a crazy person trying to keep him well. I have withdrew him from school, am washing his hands so many times a day, doing everything I can to keep him well. We leave a week from tomorrow for this final surgery. If we can get this surgery completed it will be approx. 18 months without a surgery. That will be amazing & I believe that is the longest gap in his entire life so far without surgery.

BESIDES all of his surgery madness, PJ has had a very eventful year. His vocabulary grow from a few dozen words to over at least 200. He started preschool last March. He goes to school in the local school district. He is enrolled in a program called PPCD (preschool program for children with disabilities). He has made so many amazing friends & taken away so many awesome lessons. He has gained socially & verbally. I just had a parent teacher conference this week & he is exactly on target for his age academically and scored very well on a Kindergarten readiness test. He is just lacking in some physical skills, but is working on such things as putting away/getting out supplies as well as carrying his own tray at breakfast. He also went to summer school last year where he went on three field trips-he bowled, went to the Dallas World Aquarium, and Dallas Children’s Theater. That was all in June, while making 2 trips to Shriner’s. In July, we had the AMC Support Conference here in Arlington. It was awesome and he got to spend time with other kiddos affected by AMC. You can read all about that on MY myspace blog. Finally he took swimming lessons through out the entire summer. He really enjoyed it and I believe gained some flexibility and passive ROM. We are hoping to continue that next year. It was kinda a mixture of aqua therapy & swimming lessons at a place called Different Strokes Swim School which is cosponsored by Harris Methodist Health Systems. He started back to school in August. He was Woody & Patric was Buzz Lightyear for Halloween and that brings us up to about the current date. AND my laptops hot & I’m tired. I promise I’ll do more catching up soon & try to post some pics.