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Monday, June 27, 2011

Last Day of School! Summer Reading & Wike

Today is the kids last day of school! My little book worm, Chloe, wants more school and Brendan has one month of summer school that starts up next week but technically they are out for the summer!!

I signed them up for the Summer Reading Club. All kids are signed up and ready to read! I have to read to Brendan and Makayla and am supposed to read 6 books each week to them which I can do easily. I am not sure Bren will pay attention to all of them but I will try. The library puts on a show for them each week so that will take up some of our day. The magic show is on Friday to kick off the program so I am excited. I think it will be great for all of them.

Camping was a lot of fun. The kids did not wear me out as much as last year. Chloe was a great sister and often took Bren to find pine needles and sticks for the camp fire. We bought a special needs bike trailer from Wike a few months back and it is really coming in handy. We brought that along with Brendan's wheelchair and walker but he loved sitting in this and being wheeled around by his sisters. It really kept him entertained. It is also great to take him to the bathroom in. I highly recommend one. It can be used as a jogging stroller or hook up to your bike.

Thursday, June 23, 2011

Just updating on Percs and Going Camping!

It has been a little over two months since we did PERCS. I am still thrilled with the results. He is still standing straighter, taking better steps, and has a better gait. He is stronger. He is working harder in therapy and he is much easier to stretch! He is looking pretty awesome I must say. He walks 4 minutes on the treadmill at therapy and is still riding his bike at home.

At home I try and do stretches multiple times per week along with some exercises. He also rides his bike and walks around the house. He is doing well and I am thrilled. I sometimes wonder if we should have gone through with SDR only because he is doing so well after PERCS. I was told by one Dr. in MA that he uses his tone to do everything and that SDR would take away his tone leaving him very weak but I see that after PERCS his tone has been taken away yet he is stronger. I am not sure if I was ready for SDR or ever would be but I want the best for my son and now I am pondering it. I guess that will be another year because I said NO SURGERY FOR TWO YEARS! See my brain never stops and this is what happens, the poor child! :)

We are off and camping this weekend. We bought a pop up camper this weekend to help ease the trip with Brendan. I hope it will help in some ways. I am looking forward to a comfortable night sleep that is for sure! The kids really enjoy camping and we do too. It is great family time. It is also an inexpensive way to vacation. I just hope it doesn't rain all weekend! We had one of those last year and it wasn't very fun. I am prepared with coloring books, cards, and legos in case it does.

Wednesday, June 22, 2011

3 more days of school~Oh My!!

The kids only have a few more days of school. This is my first year that I am not working. The kids have always gone to daycare full time all summer long. I have never had three kids on my own for so much time. I am nervous. I am worried I won't be able to keep them entertained but I am also excited for them to enjoy their summer fort he first time. I must admit that I am totally clueless to what I can do with all of them everyday. Brendan definitely makes things more difficult like going to the beach, going grocery shopping, and just really every day activities. It is really hard for me with all three.
I am over the fact that they won't behave because for the most part all three are excellent children. I think it is the logistics of getting all of them somewhere without totally exhausting myself. Parks are pretty much out because I can't leave Brendan walking by himself or he will most likely fall. He likes to try dangerous things in his walker. Makayla is 3 and is into climbing everything all on her own and she is NOT graceful to say the least. There is no way I can watch both of them at the same time. I could go up to the school playground and let Bren walk around the parking lot while his sister's play but how fun is that for him??? Not to mention putting Bren down slides multiple slides can wear you out in minutes.

I can't picture myself taking them to the aquarium or zoo all on my own but maybe I can do it. Maybe once I start doing it I will realize it isn't so bad and I CAN do it! I guess we will find out very soon. Brendan can't physically keep up with his sister's so I do not know what he will do all day long at the house. He can walk around the yard but how much fun will that be. He can swim in the little blow up pools we have. We have the water slide but I doubt I can lift him too many times to go down the big slide all by myself.
Anyone have good ideas for the summer? I need to start thinking and planning!

Friday, June 17, 2011

My son is spoiled but I want him to enjoy life

We got the kids a blow up water slide. It is pretty awesome. Brendan doesn't usually like 'toys'. He never says he wants anything. He never has a favorite toy that he just has to have so when he does like something I get it. Everytime we showed him a water slide in the store he lit up and asked us to buy it. So we did. I looked at a ton of them and found a great one at BJ's. It has a smaller slide which is great for Makay and Brendan when we don't have th energy to lift him onto the bigger slide. The sides are nice and high so he can't fall off while zooming down all on his own.
On the way home from therapy last night (which he did awesome at) I told him that Derek had set it up and he can try it when he gets home. He told me no he didn't want to go on it, he wanted to watch cars on Youtube. Well as soon as he saw it outside he said "mom can you get me changed?" He wanted in and he LOVED it. We just need some warmer weather so we can actually use it

Wednesday, June 15, 2011

I do many things for extra can too!

I have to now. I stay at home with my kids so my husband is the only money maker. It is scary. We have a budget that we try and stick to but lately my husband's trade isn't doing so hot! I can't work part time because I can't afford daycare for my youngest. I am a mystery shopper and do jobs when I can. I coupon to save our family money and get more for what we spend. I also have belonged to sites on line for years where you can earn points or bucks and turn them into gift cards and even paypal cash. I figured I would share three sites that have really worked well for me. You can earn points/bucks simply by clicking on emails, playing on line games, searching the web and of course on line shopping. If you shop on line alot you can earn cash pretty fast. You just use their portal to go to the site and shop like you normally do. Sometimes it takes 30 days to receive your points or bucks but you always do. For instance, shop online at Old Navy you will earn 4% back. I bought the girls a bunk bed on line and saved a ton just from buying it on line and then earned $30 back. The thee sites I use are swagbucks, inboxdollars, and mypoints. You can use my link:

Top 20 Reasons Moms of Kids with Special Needs Rock!

I found this on another blog and had to share. It will make you laugh and tear up within seconds:

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.

To see the rest of the reasons check out: Type in Top 20 reasons in the search box

Tuesday, June 14, 2011

What is like to be a mother to a child with CP

Some of you would have no idea what is like to raise a child with cerebral palsy or any child with special needs. I honestly think it takes a special person to raise these children. It is far from easy. It is emotionally and phyiscally draining. It is stressful. You cry more than you want to. However, life is also very rewarding and makes you appreciate things like you never knew you could. You literally get beyond excited at every single milestone and progress they make. My husband just doesn't get it and thinks I am wierd when I get so beyond happy for him. I beam! I have to tell everyone. I blog about it! I think I deserve the happiness I get from it after all I am his mother.

It involves therapy and Dr.'s appointments...lots and lots of appointments. I used to write all his appointments in a little calender and one year I had counted them. I can't remember the exact count but I am pretty sure it was close to 300 between the age of 1 and 2 years old. It was a bit insane. I also worked part time and don't even know how I did it. I was sleep deprived and always exhausted but I did it. He didn't ever sleep more than a few hours at a time and he was cranky!(cranky doesn't even describe him) He had either therapy or a Dr.'s appointment every week day and many days he had multiple appointments. I probably did it to myself but I have always wanted to do everything I could for him. Once he turned 3 Early Intervention stopped and he went to school full time and received therapies there...thank goodness! I really needed a break after three years of constant appointments.

I of course started working full time since he was in school so life never let up for me! Now that he is 8 life is a little less hectic. He still receives therapy at school and we have crossed some major hurdles that required many appointments. His hole in his heart was closed. His major hip surgery was out of the way. His eye surgery was in the past and most recently his heal cord and hamstring lengthenings were done. I am pretty sure he will not need surgery for at least a year. I am striving for two but I am unaware of what may happen or what else he may need. If a new procedure pops up that he would benefit from I may not be able to help myself but for now my motto is 'no surgery for two years!' Three in one year were enough for me!

For now I do bring him to additional physical therapy which is 40 minutes away and to hippotherapy once a week which is also about 40 minutes away. I do this all for him. Sometimes I do not want to go. Sometimes he doesn't want to go but we do it and have been doing it for a very long time. He has rode horses since he was 3 years old, year round. I am getting tired of bringing him especially since it is on Saturday morning. My husband recently told me I don't have to do it. I can stop. I don't have to make him ride horses for the rest of his life. But to me I do have to. I do it because I think it has helped him gain trunk strength, walk with a better gait, and because he actually enjoys it. I can't even imagine not doing it. It is just part of our life. It is offered and I would feel like a bad mother if I didn't do it. Maybe one day I will stop but not yet.

Raising him causes me a ton of stress. I think raising any child does. Who knew?! It is more my fault due to my personality. I constantly worry about him. I constantly think i don't do enough for him. He is also heavy! He can't stand on his own. He can't walk up steps even holding onto him. He can't get into his walker or wheelchair on his own. He can't go to the bathroom on his own. He can't just go get snack or a drink on his own. We have to do everything! Sometimes I go a bit nutty when I am am with all the kids all day because I feel like one of them is always asking me to do something or get something~and I mean constantly! It puts a toll on my body. I lift him constantly. When he is around my brain is non stop partly because he doesn't stop talking or asking questions and partly because when he is quiet and playing on the computer and I am thinking he should be exercising or walking around and I blame myself for letting him have some down time. I am working on it!! :)

One thing I am good at is taking it day by day. I honestly don't look into the future. You just never know. I never knew he would get as far as he has gotten. He was blind as an infant and today he can see. He still has issues but I thought I was going to have to learn braille. Taking it all day by day and enjoying his progression and getting excited to see him ride his bike when he couldn't ride his bike two months ago makes me happy. I enjoy him like I enjoy my other two children. I don't constantly think about their future and what they will do for a living and how far they will go in life or if they will ride a bike one day. I am glad I am able to do this. It is my zen.

So in the end raising him isn't all that different from raising a typical child. We have more surgeries to deal with , lots of appointments, some extra stress and saddness but there is also extra joy and gratefullness of what our children can accomplish! I can't imagine Brendan any other way. He is Brendan to me and usually I don't look at him any differently. If you start to compare and think about what they 'can't' do then life can get a bit depressing. So I try not to do that because he is amazing just the way he is and I was meant to be his mother.

Monday, June 13, 2011

Another miraculous thing after PERCS

I was doing exercises with Brendan this evening and afterwards I sat him down on his bum and let him play while I was stretching his healcords. I noticed he was sitting so straight all on his own. His right leg was almost flat on the ground. He looks so awesome! Sorry it isn't the best photo, it was my camera phone and he was busy playing. He loves cars!
His calves are getting bigger. They aren't so skeletal like anymore. I see muscles forming. His biceps are coming back as well from using his walker without the arm troughs. I really want him to become stronger but he typically does not like therapy or working very hard. I must say he did great tonight. He had fun, didn't complain too much and after working out, stretching, and playing he walked three laps around the house.

Wednesday, June 1, 2011

Couponing and More AMAZING PERCS Results!

My husband and I have recently begun couponing. I have always clipped coupons, even as a young child. I helped my mom shop and even did the family grocery shopping when I got my license. I love coupons. I think they are really neat since they are basically just like cash. I try and hunt for coupons wherever I go. I use multiple coupon codes when I shop on-line. I get some pretty great deals but lately I have even amazed myself.
You really can get stuff for free!
I have been watching the coupon show on t.v. and it really has me interested and focused on saving money and spending less for more! We have been doing this for a little bit over one month and already have a stock pile. I don't get everything for free but I am getting really great deals. I just got 18 bottles of Lawry's marinade and 21 boxes of pasta for free. I have a stash of razors that I paid maybe a few dollars for. I am talking a power shick razor for $.89. I have 12 boxes of tampax tampons (20 count) that I paid less than $12 total for.
I never thought I would purchase coupons but there are sites where you can buy them for $.08 each and if that makes a product free that means I only spent $.08 on 'that bottle of marinade'. Works for me!! So I am totally into this couponing thing and I am ready to score more free food and products for my family.

Now on to the important topic for tonight........First let me say once again: PERCS I love you! Brendan was doing his nightly walk around the house for exercise in his croc walker and all the sudden he stopped and I saw him lift up one hand high in the air. I wondered what he was doing when he then lifted his second hand high into the air. I kept quiet because I was in awe. Brendan has NEVER lifted two hands off of his walker. He has never stood by himself. He then proceeded to clap. I have no idea why he felt the need to stop walking and clap but he did and it was AMAZING! He doesn't like when you make a big deal out of things but I couldn't help myself. We walked some more and I had him do it again just to see if he could and he did twice more. I am shocked. How can he even do this? Have I been right all along and he can stand but has not had the confidence? Is it PERCS benefitting him this much in just 1 1/2 months? I am not sure of the answers but I am very excited to see what is to come.

I have always said Brendan never ceases to amaze me and once again I am saying it tonight. I am ecstatic!