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.