Parade, Drive-in and more!

Brendan's school had a small Memorial Day Parade. Brendan doesn't like me going to his school. For some reason he cries when he sees me. I am dumbfounded by this but this has been going on for years. He told me I couldn't go but did I listen? No way! He didn't see me at first and I probably shouldn't have yelled~Brendan!~ so he could find me and I could take his picture. You think I would have learned my lesson over the years but I just can't help myself. He actually held it together until he saw me afterwards so he is improving. His friend Autum was pushing him in his wheelchair. He was walking with his typical classroom. It was great to see. This little girl sends countless pictures home with I love Brendan, A+ Brendan, you are my friend....on and on and on. She loves my kid and I love her for it! It was a cute parade and I think the only reason he cried was because his principal mentioned parents could sign them out and they could go home early. I have no idea why it would even cross his mind that I wouldn't take him home early but he was very concerned about it. He got over it quickly and was very happy that I did indeed sign him out.
We took the kids to the drive-in for the first time. They loved it. We got there so early and had hours to kill before the movie started but they were great! They ate food, walked around and just waited for the movie. All the kids conked out by 10:30pm. Brendan slept in the back of the van with Chloe and Makayla fell alseep on my lap which was the best thing in the world. She isn't a cuddler like Brendan and I loved having her in my arms for hours. She isn't my baby anymore but I felt like she was for those few hours. We saw Kung Fu Panda 2 and I honestly say I don't highly recommend it. I couldn't even pay attention to it. But I still enjoyed the night.
I posted the photos of his new AFO's and his figure 4 position. They are the best because Brendan doesn't do well with flashes. He was sitting much straighter before I finally got a picture where his face is somewhat decent. I am still amazed I found him like this. The therapist at hippotherapy said she noticed a difference too. She said he was stronger and didn't need her holding him up as much and sat straighter on the horse...woohoo!!! He was so busy playing legos he had no interest in showing me his new AFO's but I took one anyway and he asked "did you get my lego's in it?" Yes Brendan they are the main focus in the picture, haha. He LOVES legos!

Brendan got his new AFO's!

We picked up his leg braces yesterday. He is walking awesome in them. He is taking the best steps I have seen since he was 3. The surgery has really helped. I found him sitting in a figure 4 position on his bed this morning. Something he could have never done prior to PERCS. I will post pictures soon.

I love this new feature on the Toyota Sienna...see video

I think I want this vs. a ramp put in. I realize I will still have to lift his wheelchair into the vehicle but it takes up so much less room than the ramp. We were concerned with how much room we would have left in a van having three children and I think this seat would resolve that issue. Gotta love technology! It looks awesome doesn't it? I guess I just have to make sure he doesn't need a power wheel chair before I completely decide. Things like this excite me though....makes our lives so much easier!!

I learned something yesterday!

Surgeons do not like when you go to other surgeons! I guess it never crossed my mind that Brendan's Dr. would be upset with me. Maybe I didn't care. Maybe I just didn't think about it or maybe I am nieve.

I do whatever it takes to help Brendan progress. I research and decide what surgery/therapy I want to do for him. I don't really let his Dr.'s tell me what to do. I listen to them and decide what is best for Brendan and our family. I chose to do PERCS. I saw online video's, I researched boards, I read about it and said YES we are doing this! I knew his orthopedic surgeon could do the typical heal cord lengthening and had suggested it years ago but I wasn't ready. I read that once you start these kids need it every year. When we went to NJ this Dr. said we probably wouldn't need this again unless he had a major growth spurt. I also wanted less pain and less recovery time for him along with tearing vs cutting his tendons. This was my choice and I was happy about it. I was caught a bit off guard yesterday. Not to mention during our 4 hour apt I talked with a mom next to me and her son, who was only 5, already had numerous heal cord lengthenings done (by the same Dr.) hmmmmm.

So what happened? Brendan had foot casts on for the last month. I needed someone to saw them off which was much harder than I had anticipated. In the end I had to call his ortho in Boston if I wanted these things off. I made an apt and off we went. I hadn't really told him we were planning on doing the PERCS or that we even did it. We hadn't seen him in a year since he removed some hip hardware from a previous surgery he had preformed. I didn't realize I had to tell him. I am his mother and Brendan has more Dr.'s than you could imagine. After a few minutes the Dr. looked at me and said "I am going to push you here but don't take it the wrong way. What exactly is my purpose here?" I am not very good with on the spot humiliation. I knew exactly what he was saying. I explained why we went to NJ and he said "well I do the exact same surgery". I knew he doesn't but I wasn't getting into it. I didn't feel I had to explain myself. This is my child and this was my decision. So he continued on and I told him I still wanted him involved. We need to watch his hips and spine but I really don't want any other surgeries in the near future. Boston is a 2 hour commute for us and the apt.'s seriously always take 1/2 a day. I have no idea why I need to wait over an hr to see a Dr. and then spend the next 3-5 hours but it always happens!

Part of me did take it the wrong way. I debated walking out and never going back. I sat there for a while thinking. I decided to stay because the Dr. wanted bi-valve casts made for night time wear. (Not that the 3 other braces we have at home for night time wear aren't enough!)I went back and forth in my mind since I had to sit and wait 1 1/2 hours with Brendan in the casting room for his legs to be casted. I know I need to watch his hips and spine. Then I thought well any Dr. can watch his hips and spine and then I thought well he did preform major hip surgery on my child, do I really want to go through getting all of those records and trying other Dr. that I may not like? Then I figured we are already here and he is already missing a day out of school so we will just stay and have the casts made. I have always liked this Dr. but he kind of ticked me off partly because I know he wants the paycheck for the surgery. He was probably insulted but I don't really care. I will do whatever I think is best for my son. So do I go back or do I find another orthopedic surgeon?????

PERCS, Weather, and Family

PERCS was a success in my mind anyway!
It has been one month since Brendan had PERCS. He is doing FANTASTIC. He is able to sit on his bum comfortably, he is pedaling his handicap bike all on his own, his gait is better AND he is standing much straighter in his walker. All of these things = awesome in my book!
Casts come off on Thursday! It was an ordeal and it will take a day out of school and a trip to Boston to get someone to saw them off but we are all ready for it so that is what we will do. He is afraid to have them sawed off so he keeps telling me to leave them on. :) I don't think so!

Can we say it is FREEZING?! I am so cold right now. It is May in NE so where is the sun? I am ready to go for walks and enjoy the outdoors but these dreary, wet, cold days are not motivating me.

My sister is getting married on June 5th and I am the maid of honor. I have my dress and almost have everything for everyone else in my family. Weddings can really add up! I am throwing her a shower on the 29th. Her wedding was not supposed to be until July 16th but due to family illness we had to move it sooner. I hope it is still a happy day for her. Brendan looks dashing in his suit so I can't wait to post pictures. I am sure the girls will look beautiful. They love wearing dresses so they will have a fun day. There will be lots of nails to polish that day!

Well I am off to another IEP today. Not sure why I need to go again one month later but it seems worth it. We are discussing adaptive PE and technology for Brendan. The school wants to buy him his own touchscreen computer. Can I just say once again that I LOVE HIS SCHOOl!! They really understand him and what will work for him. They are really trying to get him to learn and I love that about them. I don't know if it is his ADHD meds or his teachers but the other night he read off the letters A,M,S,T, and C to me from his flashcards with no mistakes and very quickly. I am so proud!

Ride Brendan Ride

Brendan rode his bike again today. It was only the second time since surgery and he was pedaling so much more than the first time. He doesn't want to stop. He was on his bike for an hour. You need to help him get started but then he can really pedal! This is such great exercise for him. He was trying so hard he lifted his arms up in the air and really pushed with his legs. He normally doesn't act like his legs exist so this is very exciting for us! RIDE BRENDAN RIDE!!

Bike Pedaling, Pa, and School!!!!

Brendan has a handicap bike and today he pedaled all on his own! I owe it all to PERCS. He rode it earlier this season and could not pedal. Today, casts on and all, he pedaled down the road. He needed a lot of assistance but for a short amount of time he did it ALL BY HIMSELF!! I honestly can't believe it. I never thought he would be able to pedal a bike. I owe it all to PERCS. He was very proud of himself and excited. He wanted to wear his helmet to be just like his sisters and now he thinks he is so big because he rode his bike on the road like his stepsister, Chloe.

To top off this great achievement he later called his Pa to tell him about what he had done and had the greatest phone conversation I have ever heard him have. He never repeated himself. He didn't ask the same question over and over. He actually talked to my dad. What an amazing day for my little man. I needed something good to happen today to lift my spirit. I think my dad did too.

GO BRENDAN!!!! Like I always say you are amazing! Pictures will come the next time he rides. It was unexpected. :)

Today at school Brendan got to do the morning announcement. I was told he has been asking because he hears other student's say them over the loud speaker. Well today was his first day. He had to say "Today is recess day C." He is sitting next to me right now and I asked what he had said and he spoke it to me so clearly with the biggest smile on his face. I am so beyond proud of him today.

I forgot all about his heart!!!

I can't believe I forgot to post about something VERY important!! The day before PERCS Brendan had his second check on his heart device. He had an atrial septal defect and had a 20mm umbrella device placed into his heart via heart cath last July. The first post op appointment was a bit disturbing because the Dr. said he saw a few leaks on the ultrasound. With everything else going on in my life I refused to let it bother me and I put it out of my head.

Well the second ultrasound showed ZERO leaks!! The device is almost fully covered by skin and looks great! I am so relieved. One thing I do not have to worry about anymore. His heart is doing great. His grandfather and great grandfather both have (had) bad hearts so this is a very good thing to hear!

I did it! Look to your right :)

Okay I got a video posted. I am not that high tech but somehow I figured it out. I posted a short video clip of Brendan taking really nice steps. He is following through with his right leg which is great for him. This is his 3rd lap around the house so he was starting to get tired as well and I think he still looks great. He is standing tall, legs are straight, and he is bending his knee as he steps. I will have to try and get the pre surgery video up but that will be another day!

I am struggling with some awful family news I received recently but I am trying to just deal with it the best that I can. I am an emotional person and I don't handle illness well. Hard to believe I raise a disabled child!! I have a huge heart but sometimes it impairs me. I just get so emotional that it effects my entire day. I can't get into it publicly due to their wishes but just keep my family in your thoughts and prayers. We need them!! :'(

Brendan is doing great and I am so proud of him. Casts come off in about 8 days...woohoo! He has almost taken all of the stuffing out from around the edges of the cast so his legs aren't looking so pretty! He is doing great with his letters. ADHD medication is working. Either that or his school totally rocks! He has struggled with letter recognition for years due to his vision issues. However, he has now gotten c,m,s,t, and a down pat!!! He can spell his name and recognize all of those letters as well but for some reason he really struggles naming the letters. We are heading in the right direction. I am so proud of him. He is also learning site words....the, my, I, and A. He has trouble with the but otherwise doing awesome!!

13 days since surgery

Brendan is starting to walk more and more. It is difficult right now since he has big walking boots on with casted feet but he wants to do it. He walked all around the yard yesterday while I worked outside. He can sit on the grass and NOT tip over. He looks very comfortable. I find him in his bed sitting up all the time watching t.v. before bed. He looks like a different kid. It is very odd to walk in and see him sitting there so comfortably. I love seeing it.

School isn't having him walk yet. I really do not understand why but what can I do. I asked them to but they think it is better for him not to walk. Whatever. I am not fighting that battle. I am a little upset that they still haven't gotten a stander that he fits into because he should be standing everyday but other than that I love his school.

He is speaking more clearly and longer, more complete sentences every week. He even sounded like a typical little kid today and used 'like' in his sentence. I can't remember what he said but it was something like: mom that's like really cool. He is too funny. He is getting better with the computer thanks to youtube. He can click on his own videos, enlarge them, and press escape to go back to the small screen. I do not always have to help him like I was just a few weeks ago. I think his ADHD medicine is really helping him calm down and focus on things.

Not too much else going on here. I am ready for those casts to come off because bath time takes two people and he is heavy!!! :)

OH and his bruising is much better...almost gone!! :)