March Madness!!

This month has been full to the brim with appointments and surprises. Let's start off with PJ's ARD which was March 4th. We went over his IEP from last year and he met 10 out of 11 goals, which is like 91%. And the one goal he didn't meet he met partially. But anywho we wrote up new IEP goals and discussed new strategies for him. I will scan and post his goals or maybe I'll type them up tonight. But a couple things that were not listed that we will be working on are that he will follow the same type of entry/exit routine as most kids to the best of his ability. This includes walking in, taking jacket off, removing folder from backpack & placing in tray, and hanging backpack. The same thing in opposite order for exit. Also, we got some spring loaded "First" scisors from Fiskar and he is doing VERY VERY well with them. We also visited the subject of potty training. Which we are currently having NO SUCESS at.

Then the following day his baby cousin, Laura Gabrielle, was born. She was such a beautiful baby. I was just astounded and speechless the first time I saw her from her beauty. Maybe it's because I don't have a girl or maybe she is just that dang gorgeous.

Then we had open house at PJ's school. Basically it was a continuation of his ARD with me, him, and his principal standing around discussing strategies.

The following weekend was the special bunnies easter egg hunt. Always a favorite of PJs. He LOVES to see the Easter Bunny and play all the carnival type games. And I LOVe to get him and Patric dressed up in their little sweater vests and head out there. It is always held the Saturday before Easter weekend at a Park in NRH. It is put on completely by volunteers & I think its one of the best community activities available to kids with a disability.

Then SPRING BREAK! I took both kids to the dentist one day. We've had a HORRIBLE time finding a dentist we like that doesn't have a 2 hr wait time once your there & check in for your appointment. I found one! I am in love with her. She is an awesome woman and did so well with both kids. They said PJ's teeth look excellent. He even let them take Xrays, which I was amazed, I thought there was no way he'd tolerate those strips you have to bite in his mouth. The following day we had PT, OT, and ST evaluations at Arlington Memorial. We had been on a hiatus from therapy since last July. I had had enough. His therapists were no longer looking for meaningful activities to do with him. So we just quit. These ladies seemed awesome. Stephanie was the PT and she walked PJ around the gym, let him try out various pieces of equipment, had him run, also checked out his feet w & w/out AFOS. Jennifer was the OT and she was great. She saw lots of areas we could work on. And Patricia the ST was AWESOME. She gave PJ one of those standardized tests. He scored at a 7 yr old level for receptive language and a 5.5 yr old level for expressive. THAT IS THE FIRST TIME EVER HE HAS NOT BEEN CONSIDERED DELAYED IN THE SPEECH DEPARTMENT! I will finish up this post this afternoon.

Christmas & AFO's & Elbow Splints

OK so I promised I'd do a Christmas post. We had a great Christmas. Spent Christmas Eve with Paul's brother, mother, and nephew. We enjoyed the family & company & togetherness.

Will insert Christmas Pics when I get to a faster internet connection.

Then we did the Christmas morning Santa thing at our house. It was made EXTRA special by the help of one secret santa. The kids enjoyed it sooo much. BUT silly mommy, took pics of all the stuff Santa left behind, but in those pics all the cookies for Santa are still on the plate. LOL! I guess I could have taken the pics while Santa was at our house. :) Then we went on to my moms for a beautiful Mexican fiesta. Complete with tamales, tacos, rice, and beans. YUMMY YUMMY!

Ok now for the recent news. We went to Houston last Thursday. Seems PJ is really enjoying the trips down there now that he is not having surgery. We picked up his new AFO's, which look exactly the same but taller. He also had new wrist splints made because he has been crying & begging for them every night since they said he didn't have to wear them anymore. Then we turned around and drove home. THose are always long days 5 hrs driving there, 45 minutes there, another 5 hrs in the car on the way home. I'd almost like the appointment to be longer just to break the driving up a little more. He was such a big boy. Just watched his movies & sang along to the radio the whole way home. Then we stopped for a cheesburger, ate at Nana's house & headed home. All in all a good trip.

I forgot to mention we also had an appointment at Hanger Orthotics on Jan 21st. Pj had had some very expensive elbow splints made before we did all of these rotational surgeries. They worked very well, but he couldn't wear them anymore. We went in and they made the adjustments for his grown & the change in his rotation. He is no longer with the back of his hands together in front of him. Anyhow they fit great and he wore them every night all night up until a couple days before we left for Houston. Then, the place that use to be a thumb hole, that they just stretched out and now his forearm lays there, is pressing in on the inside of his forearm. We are going to go have them readjusted during Spring break. I have exhausted all my days off just going to Houston & we still have 3 months to go besides this one. I'm sick as a dog, so is PJ, Patric, & Paul but don't have any more days I can take. So.. I'm scheduling all dr's appts for both kids on Presidents day, Spring Break, Cinco de Mayo, etc......

Three More Appointments

I promise I will post more about Christmas when I get a chance to better digest it. We also haven't even finished up Christmas with Paul's father. We will be doing that on the 12th so I believe I'll have a Chistmas post shortly after. OK, now on with the appointments.

On December 31, we went to see Dr. Kukolich. She was the geneticist that was called in from out of town on New Years Eve 2003 to come in & diagnose PJ. Once we got her diagnosis we were able to be discharged after spend 1 night "rooming in with him" outside of the NICU in the hospital. She was the one that basically came in and said for lack of better words, unhook all this crap & let him be. She walked into the room, with her birkenstocks & jeans on and told me my child will live, he will live an average lifespan, he may or may not walk, he will not be a concert pianist or the the quarterback for the Dallas Cowboys but he will be smart and alive. Take him home & love him. And that is exactly what we did 4 years ago on New Years day. We brought him home and loved him. And he has blossomed into such a beautiful young man that is still working on manners, but loves his mommy, and loves to do all kinds of things any 4 year old does. Anyhow back to the appointment at Dr. Kukolich's office. We only see her annually and at our last appointment she was beginning to get concerned with PJ's inability to sit still & pay attention as well as his delayed expressive language skills. She had him earmarked for a visit to the developmental pediatrician for an evaluation for ADD or ADHD if we did not see significant improvement this year after he started school. WE DID! He was able to sit down in a chair and hold a small conversation with her. His vocabulary is amazing. He speaks like an adult. And none of the hyper issues anymore either. He is growing at less than the 5th percentile in everything but she is not concerned because he is growing just at a smaller rate. She was soo please with everything she saw with him as well as how he had recovered from his surgeries, the most recent only being a few weeks ago. I will post her report when I receive it in the mail. In honor of PJ's birthday I am including the pics she took of him in the NICU 4 years ago as well as a pic of him now.

Of course it won't upload the current picture of him... but look at the bottom of this post & you'll see him at Shriner's yesterday.

We also had his 4 year old check up at the pediatrician on January the 2nd at 3:00pm. He got 3 shots- Chickenpox #2, DTaP, and IPV I believe though my memory is not serving me well this morning. He is 3 feet 1 inch tall and weighs 26 lbs without his braces. He gained 1 lb back since his last surgery surgery! :) The pedi we go to is the daughter of the doctor who took care of PJ in the NICU. They both have a special space for him in their hearts. She was taking snapshots of PJ to show to her mom at home. And then her brother showed up, who is also in medical school. He came in and instantly knew who PJ was because his mom talks about PJ so much. He was also interested to see AMC since he knew it was rare, but if he was going to be a practicing pediatrician when he finishes medical school he may run across it again someday. Anyhow it was like a big family reunion. We were all hugging and weeping about all the awesome accomplishments PJ has made in the past 4 years.

Finally, we went the Shriner's Hospital in Houston for a follow up appointment and Arthrogryposis clinic. We took Xrays of his arm and the plate & screws look great. He is already growing new bone around it. She gave me the ok to start stretching that arm like we have already been stretching the other one... (See picture in previous post) Dr. Barnes looked at his feet. He said he didn't believe they were tightening up again. He said they looked good, but that he needed new AFOs. He also felt that hard round part on the bottom of PJ's foot and described it as a boney prominense (sp?) he said it should not be an issue. Shouldn't be any pain associated with it. But he did have them let out his AFOs to give it some space as well as order that his new AFOs accomodate it. We also talked about his inability to sit indian style though I had always been told that his hips were good & normal. They told me a couple of things I could do to start stretching his hips. Hopefully by our next appointment he will be sitting indian style. Was also told he could take a break from his wrist splints because he is doing so well. That makes me sooo upset and nervous. He is a regressor. I just wouldn't want it to happen to his arms after so much work and so much surgery. He cries for his splints every night. We will continue to wear them until he outgrows them. I protested but the doctor said to trust her and just to keep an eye on him and if he starts regressing then we will put him back in hand splints. She also talked about the split tendon transfer being at least 2 years away. But all and all they are all super please with this years surgery. We had 5 actual surgeries for 6 different procedures. He is healed and functioning and doing soo well. Here he is in the exam room:

We go back at the end of January to pick up his AFOs and then we don't go back until JULY!!!!! Woooo hooooo! This will be one of the longest breaks we've had in appts- 6 months. AND the longest break we've had in surgeries- 18 mos AT LEAST.

I promise I will add a Christmas post later. I'm just still recovering from the trip.

!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!

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

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.

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.