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!! :)

Already one week since PERCS!

Brendan is doing well. Brendan enjoyed the trip down. We went out to eat and he got to sleep in a hotel. He wasn't nervous or anxious until the morning which was good. He knows what 'surgery' means now and he never knows how he will wake up feeling which gets him upset. I can totally understand. He was upset heading into the surgerical room and yelled at his anesthesiologist and said "I don't like you!". Probably not the person you want to say that too BUT I think he understood ;).

He was away from us for about two hours. I think waiting is the hardest part. In my head I know this isn't a major surgery but I also know anything could go wrong. The mother in me I guess. Everything went well. The Dr. did have trouble getting a good alochol block into his adductors due to some scarring from his hip surgeries. I can tell that he had difficulty because his hips are not that loose. Recovery took a while. Brendan kept throwing up even though they gave him medicine twice. His heart rate was also high and no one knows why. He couldn't go home for a long time due to his high rate. I think we got to leave around 2pm and surgery was at 7:30am. Not too bad I guess. The ride home was LONG and he threw up a lot. He didn't fell well and he had to pee 5 times. Thank goodness I was smart enough to ask for that pee bottle. He had to wear knee immobilizers for 24 hours along with foot casts so taking him to a public bathroom was not easy. Not to mention he was in pain!

Recovery wasn't too bad. He didn't seem in that much pain but he has horrific bruising. Bruising so bad I sent pictures to his Dr. His entire thigh became bruised over the past week and under a knee. I spoke with his Dr. and I guess his bloodwork showed a high number that relates to his anticoagulating plateletts. That was the reason for the bruising which apparently his Dr. didn't look at until after I emailed him pictures. Why do bloodwork if they don't even look at it?? What if it was major surgery and my kid lost a ton of blood? I am not very happy but I can't even let myself go there. I just have to be thankful that he is okay. The bruising is finally looking better but he was purple almost black and it was awful!! Still is but it is getting better.

He is very weak. He doesn't walk to walk or do therapy. He had PT last night for the first time and I had to leave the room so he would actually work without crying. He walked more today than he has all week.

He is so STRAIGHT!!! I have never seen his little body stand so straight. He looks awesome. He is constantly sitting up in bed on his bum and it is a great site to see. He never can just sit up and be comfortable. I am excited. I hope that he can actaully gain some leg muscles and get stronger and walk better over the next year. I also have a goal that he will stand unassisted at least for a few seconds within the next year! We shall see!!!!!

He has to wear knee immoblizers at night for the next month which is nothing new for us. He is also casted for one month. He is having new AFO's made and already started therapy so we are on the road to recovery! He has been such a champ through this entire thing. He is amazing. He almost never complains. He doesn't act like he has pain which I know he does. He is the toughest little boy!! I love you Brendan!

PERCS on Tuesday!!

The time has already come. We head to NJ tomorrow after his cardiologist apt. I am not super nervous yet but I am always calm right before the surgery, except for the hip surgery...that was very emotional. I am still excited that it may actually help him and he will be able to walk easier. I am rying not to get my hopes up because I have no idea how his body will react but in the back of my mind I can't help but think this could change his life. I guess we will see soon enough. I guess we will enter a new phase in our lives. It seems like life is forever changing as the kids grow. I am enjoying their ages right now. Brendan is becoming quite the character lately. He is all boy sometimes and was very funny while out to dinner the other night. He kept whispering things in my ear to tell my husband like "you smell like poop" (hey I told you ALL boy). He would crack up when my husband would whisper something back just as fowl. It is really nice to see him continue to progress no matter in what way. :)

Think of us, wish us luck and pray if you do. I will update afterwards.

Oh The Compulsive Behavior!!!

I love Brendan to death but he can really make my mood go from a 1 to a 10 within seconds!! He has always had this issue with opening and closing doors, pushing buttons, and now banging on walls! It can really drive one insane. The real reason I go nuts is because he won't stop! He won't listen! He just keeps opening...slamming....opening....slamming or bang bang bang bang on the wall! I just don't get it. It must be part of his ADHD. He can not have a button or something with buttons in front of him or he has to touch them 10000 times!

I decided I don't like flipping out and screaming at the kid and in all honestly that doesn't even work. It may work coming out of his dad or stepdad's mouth but not mine. It never really has so I put my big pants on and decided a new tactic. What will make this kid listen??? Take away the one thing he is obsessed with right now...You Tube. Oh and guess what? It worked!!! For the time being.

I can't blame the kid because back when he was 3 years old I put him in his stander which happened to be next to his bedroom closet door and he realized he could open and shut it. This was one of the first times mommy got a break and sine he was happy in his room in his stander I thought what is the big deal? Well in this new house the front door doesn't have a deadbolt and he can open and close it....hard! It drives me a bit nutty within seconds. He has been better witht he door but he recently watched his Uncle rip down a wall and build a new one for us so my new washer and dryer could fit nicely in their little closet. Well he has been banging on walls to build like Uncle Robby for a week now. At first it was cute and he was just banging the floor. This banging moved to the walls and got very loud and very annoying. So the yelling began. The time out in his room and then my ah ha moment. I am going to take away you tube!

This morning I calmly talked to him before he even got in his wheelchair and told him we can not bang on walls and he asked why so I explained and then I asked what would happen if he banged on walls and he said you will take away my cars (he watches them on you tube) and I said yes that is right. So I know he totally understands. He did try for most of the morning but he did start up once. I told him this was his warning and that he would not be able to watch his cars after school and he stopped!! Oh my goodness it works!!! He has always handled calm discipline better than yelling but sometimes I have to remind myself instead of getting all stressed out and just yelling at him I need to try something that works for him.

Being a mom is hard work!! Thank goodness I love it!