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Tuesday, March 29, 2011

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. :)

Friday, March 25, 2011

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?

Monday, March 21, 2011

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:
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!!!

Wednesday, March 16, 2011

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?!

Monday, March 14, 2011

Anxiety is setting in

I read through Brendan's surgical packet and the anxiety hit me. I know this surgery isn't nearly as evasive as some others. I know it isn't heart surgery or hip surgery, just some tendon releases. Just tell my brain that because no matter what I can't control this feeling and the constant tears welling up. I just can't. I try. I tell myself everything will be fine. He is a trooper. He always handles everything great but for some reason my brain just doesn't listen to all that and the anxiety over runs me. I had to make a ton of phone calls today to get insurance all in place. He needed cardiac clearance and I have to take him in to get some bloodwork done. I think I made all the phone calls needed. I still have a few more but I need to wait another week.
This procedure may be a miracle and it may benefit him and all this anxiety will be worth it...I hope. Some days I wish it were easier. Some days I wish I didn't have to deal with all of this. Who in the hell has to go through all of this on a daily basis. I swear there is always something to stress over or think about or wonder if I should be doing for him. I just want this feeling to go away for a while. I want to know what it feels like to not have CP in my life. I forget what it is like. I forget what it is like to not stress about my children and sometimes I hate it! Sometimes I just get pissed off and other times I just cry for no apparent reasone accept for it sucks!
Okay I guess I needed to vent today. It isn't helping. :(

Wednesday, March 9, 2011

10 things I love AND hate about CP!

Doing something a little different today. It is Cerebral Palsy awareness month and I thought I would entertain some people.

10 Things I LOVE about CP
1. I love the special bond I have with my son. It is very unique. We are very close to each other, sometimes too close :)
2. I love that my son still asks for hugs and kisses at 8 years old as his sisters run off to play without them. He loudly exclaims "mom I want another hug and kiss"
3. I love that having a child with CP has made me a stronger person even though I don't realize it at times. It hits me every now and then like when I can atually get some sleep the night before a surgery.
4. I love that CP has made his sisters oblivious to disabilities. In our house they pretend to army crawl or collapse their legs when you lift them and say with a smile "I'm like Bren" and in an odd way it is humorous to us.
5. I love that my son could care less that he has CP.
6. I love how much I can appreciate the smallest milestones. Milestones melt my heart even when my typical children reach them.
7. I love that I had to quit my job to stay home with my children because there wasn't an after school program for my son due to his disability. Hey there are perks! :)
8. I love that everyone falls in love with my son!
9. I hate the arm muscles carrying around an 8 year old boy with CP has given me. OH Wait I am still on what I love! I guess I love that I can still lift him even though he is 1/3 of my body weight.
10. I love that I was chosen to be a mother to a child with ceberal palsy because I have realized only those who can handle it our chosen. I have chosen to love him more than anything in the world and make his life the best that I can!

10 Things I HATE about CP
1. I hate watching my son be in pain.
2. I hate the fact we have been through 7 surgeries and over 8 procedures and the fact we will have to go through many many more.
3. I hate the amount of time we have spent at therapy and doctor's appointments. Some can last all day long. He has 10 appointments this month alone!
4. I hate that we are limited as a family to what we can do. Sometimes it is too exhausting to do the things we want especially on my own with the three kids.
5. I hate when I have to strap on his ridiculous leg braces at bedtime. I could never sleep with those things on and do not understand how he does it?!
6. I hate that I cry a lot for my son and what he goes through.
7. I hate the grey hairs and wrinkles I have received prematurely due to the amount of stress CP has put on me.
8. I hate that I know Brendan's CP could have been prevented if I wasn't in that hospital with that Dr on a Holiday when he decided to come 7 weeks early. It is a hard thing to get past but I am getting there.
9. I hate that due to Brendan's CP he probably won't be able to drive. He is obsessed with cars, go carts basically any moving vehicle and constantly talks about getting his license and driving. I do not have the heart to tell him he most likely won't be able to drive. This actually brings tears to my eyes as I write it. :'(
10. I hate that CP exhausts me mentally and physically. I hate that one day I may not be able to lift my child. I hate what CP does to his body BUT I love this boy more than life itself!