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!

IEP success!!

Can I just tell you that I LOVE his school. I am so glad we switched his school system. This school really knows what they are doing and have plans in place to teach disabled children. It is amazing. They are really trying to teach Brendan they way he needs to be taught. They are coming up with ways that motivate him and realize computers are the way to go..unlike his last school which did not even have a computer in the classroom. He has progressed just in the past two months so I can't imagine what the rest of the year will bring. I am thrilled with his teachers and therapists. They all seem really great with lots of energy.

It was a great IEP with amazing goals. I am so proud of my little man. He is always progressing and amazing me with his achievements. :)

It is Cerebral Palsy Awareness Day!!!! Bloodwork, Tears, and some excitment?!

I just had to say that :)

Well Brendan and I made it through our day. He was NOT looking forward to bloodwork. He works himself all up beforehand. He just can't control his anxiety which I can understand. So I tried everything but nothing worked. He freaked himself out and was yelling to anyone who would listen "I am not getting bloodwork done!". Of course everything thought that was pretty funny. In the end it wasn't that bad and he calmed down as soon as the needle was in. He just said ouch and watched it and I told him it was all done, that was it. He did great after that and wanted his stickers. :)

Next was his neurologist apt. It went well. It kind of felt pointless since we aren't scheduling Botox. We waited an hour for the Dr. and Brendan was restless at this point. Thank goodness she has an amazing assistant whom Brendan LOVES. She took him for a walk to get water so I could talk to the Dr. She just wants me to continue his meds for ADHD even on the weekends. She also wants me to up the morning dose to see if that helps him even more at school. He is way behind on this whole learning thing BUT he has come a really long way the past year. He has always been two years behind. So I think of him more as 6 years old. Although when I see what his 6 year old stepsister can do like read and write I do get concerned. He has had so many issues between vision and ADHD which have really hindered his learning. His vision has really improved and now that we have controlled his attention problem maybe he will really start to improve. He is finally asking me to spell words for him and he is interested in hearing it!! He can name words that start with a certain letter so I am impressed and we make it a game so he enjoys it. He is getting it and he will continue to learn. Not too bad for a child with CP, vision impairment, ADHD and a whole heck of a lot going on in his little body. :) He is just awesome!

It is almost April!! Okay so today I am getting excited about PERCS. Oh the lovely emotions that come and go for me. I read some very positive stories which is what I need to do to help my anxiety. What if this surgery really helps him? What if he can walk better and longer distances? What if this is the best thing that I could have done for him? I guess we will all find out soon. I am going to record him walking pre and post surgery and if this does him wonders I am spreading the word! This surgery is fairly new and not very common, yet everything you read on it is so positive. I wonder why more and more Dr.'s wouldn't want to do this for our kids?

26 days until surgery and counting.....

UH is all I can say. I am brining him in for bloodwork and urine testing on Wednesday. He also has his neurologist appointment. We will be skipping Botox this time due to the surgery so that is one benefit of doing this!! :) I do believe this is #10 of Brendan being put under. I think one of the worst parts about surgery is knowing they are put to sleep and anything can go wrong. Thankfully Brendan normally comes out of it just fine. He really likes to sleep it off and will sleep for hours if you let him. He almost ALWAYS vomits but I am very used to that by now and if you wake him up before he is ready be prepared for the crankiest child who wants to be held and whines continuously for a very long time. I have learned all of this and just recently we got it down! The last time he went under for Botox treatments he slept it off, woke up happy and did NOT THROW UP!!! So just maybe I will use my past experiences and help him wake up nicely this time too! Wouldn't that be nice!?

On another note it is snowing here and I am so done with Winter. It is SPRING New England how about some sunshine. You spoil us with warmer weather and then throw more snow at us. We were outside all day yesterday thatching and raking our lawn and now you give us snow to cover all of our hard work up. I am not very happy.

Well not too much going on here. We are buying a pop up camper to make life easier camping with Brendan. We are very excited. We should be all set for the Spring and Summer. We got his handicap accessible bike trailer in last week. It is huge but he can fit in it. His head has plenty of room and his legs aren't all scrunched up and it came with a wedge seat so he looks great sitting in it. Now I just hope I actaully still pull him while riding my bike! Last year he was lighter as well as his bike trailer. If you want to check out the website go to:
http://www.wicycle.com/special_needs_large_bicycle_trailer.php
hopefully that will work. They make special needs bike trailers. I was excited to find this because it is hard to find things our whole family can enjoy and this is one of them that we can keep enjoying while staying fit to keep up with our 3 energetic kids.

We also joined the YMCA. We found one that is handicap accessible. We don't have a pool yet so it will be fun to swim whenever we want as a family and I can get a work out in during the day when I just have my youngest with me. Lots of good things going on in our household. Now we just need the sunshine!!!

So excited for music and HAPPY ANNIVERSARY TO US!!

I finally have music on his blog!! I have been trying for a while and couldn't figure it out. I guess I just needed the right site because it was very easy. Brendan really likes this song and I think it suites him because he makes friends with everyone he meets!

I am feeling a little better about the surgery. I still have that anxious feeling but I already know that won't go away until the day is here. I just accept that.

On another note today is my 3 year Anniversary. We aren't doing anything special but I decided to make a cheesecake for dessert tonight to celebrate. I am very fortunate to have found Derek. He is an amazing father and stepfather to Brendan. First of all he is my rock and lets me be emotional about my journey in life. He is always supportive, he lets me cry, get angry and then he reminds me that we have this amazing little boy and I don't always need to get upset. He treats him like a typical child and not that one who has CP. He has helped me turn him into a great little boy and I appreciate him for that. He is always there for me when a surgery approaches and on that day. He is always amazed at how calm and strong I am the day of surgery since he sees me fall apart prior. I couldn't ask for a better husband and can't wait to celebrate our 30th! Hard to imagine we met online. How luck are we?!