Friday, December 21, 2007

!Elbow & Shoulder Action!


So I sit, dressing my "little toy soldier" (that is what I called him the first year he was born, his arms were soo tight and straight down to his sides like a little toy soldier) and starting a new stretch the surgeron had told me I could start on his arm that had surgery back in August. I know I've mentioned the unintentional benefit of losening his entire arm. Well now he can lay on his back, raise his arm as high as he can, then gently relax his elbow. This allows him to passively touch his face laying down. Well the stretch part comes in once he's passively bent his elbow I take it and gently bring it over to the side and down toward the couch/bed/whatever surface. Thus the picture. When I'm actually doing it and not taking a picture it looks more like a right angle. I just had to share this pic because when he was born, and even into the last couple years there was absolutely NO WAY I could even imagine his arm up out and away from his body with him as an active participant. Sorry I just had to share my joy in this new found position.
P.S.- Never realized I had all these shirtless pictures of PJ. HAHAHA Now that we are done with the upper extrem. surgeries maybe I'll post some fully clothed shots!

Wednesday, December 12, 2007

Road to Recovery

The road to recovery seems to get shorter and shorter for PJ with each surgery. Today is December 12th and he returned to school today. He has been off pain meds and even tylenol for 4 maybe 5 days straight. It's only been 16 days and he acts as if nothing every happened. I believe he could have gone back to school the end or middle of last week.


Now he has matching scars on each arm. He calls them his number 1's. But I can see such SIGNIFICANT improvement. His arms were so rotated that when he brought them together in the front all you could get was backs of hands together. She rotated them out so that his arms are now in a nuetral position so that he can type without any strain but even better he can get them VERY EASILY to a thumbs up position!!! That is amazing. He will be able to bring both palms together. He will be able to do tasks that require 2 hands. he will be able to clap. AND now we've found a very good therapy to get that thumbs up position. VIDEO GAMES. His favorite it Tony Hawk. And though I'm not all about the TV time for little kids, I sat there and cried while I watched him actively use both hands on that controller, which his arms & wrists in an optimal position, and actively using his thumbs as well. It was a beautiful site. Just had to let you all know how awesomely he is recovering... I mean recovered. We go for our post op appt and regular old Arthrogryposis clinic Jan. 3rd.



OK so not the perfect position on the first night of video games with his hands in thumbs UP on both sides. BUT looks sooo much better than we could have ever imagined & he is improving his finger dexterity as well. Pics added 12/13/07

Monday, December 03, 2007

Pj's Last Surgery for a while



PJ was admitted to Shriner's Hospital for Children in Houston on November 25. This was the second time we had tried to do this surgery. The first he was not admitted due to an ear infection. He was first in line for surgery the following morning. The surgery actually began around 8:20 after his IV was run and he was put to sleep. The finished about 11 am. He did have to have a breathing treatment as he woke up, due to some congestion in his lungs. Once they got him up he was fine. He cried for about an hour. Then he slept for a couple hours and by 3 o'clock he was awake and ready to play. He played and played in the floor until it was time to go to sleep.


His is now at home and recovering very nicely. It's only been a week and he's up playing with his brother and running around and helping me put up Christmas decorations. Oh yeah... I forgot to describe what kind of surgery it was. It was a humeral osteotomy. Ok for those faint of heart this sounds kinda gruesome, but I've come to peace with it and the other side made a WORLD of difference. They make a small incision in his upper arm, cut completely through the humerus bone, rotate it outward so that his hands and stuff are no longer so inwardly rotated. Then they use a small titanium plate to hold it all together. The plate will have to come out in 18 mos to a year after they were put in. That is hopefully his next surgery. Barring anything else popping up and surprising us.With his arms not so inwardly rotated anymore, he can get his palms to come together, instead of the backs of his hands. So now he will be able to clap, type comfortably, hold heavy objects that require 2 hands, and hopefully his arms will be in a better position to write as well.

Well that's about it for now. He is having one little issue we are going to address after the new year. His AFO's are uncomfortable and it looks as if his feet are beginning to curve in again. He just had surgery this spring/summer on them to remove a wedge of bone there at the curve. I'm hoping it will be something easily correctable with a Dennis Brown Bar or something of the like. I'm just hoping and praying it will not be something else that requires surgery.





Saturday, November 17, 2007

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.