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Tuesday, December 6, 2011

I hate Christmas!!! Deal of the week :)

I am starting to hate Christmas as I get older!! JUST KIDDING.... Actually I just hate buying pointless gifts. I love spending time with the family and having holiday spirit. I love seeing the kids get all excited. I love having a real tree. I am even starting my own Santa's village this year. I remember how much I loved them at my grandmother's house when I was a kid. Now my kids can enjoy it.

3 months after Makayla was born we were broke so for Christmas gifts I just made everyone a basket with some mugs, hot chocolate, and homemade goodies like truffles chocolate dipped pretzels, fudge etc. They were a hit and it they seemed so personal. I really enjoyed making everything for everyone. Compared to buying gifts for 5 families it really eased the stress of spending money we didn't have. I haven't really done that since but feel like doing it this year. Actually, I am doing it but I am also giving some other gifts along with the baskets, especially for my mom since my dad won't be here to spoil her at all.

It adds up so fast and I have already used so many credit cards and it stresses me out! We spend way to much on our kids but my husband just says but they are OUR KIDS!! He never thinks their piles are big enough and always makes me go and buy more. I feel like our house is exploding with toys and now we will have even more. He was very spoiled as a child and I can't say that I wasn't but I think everything costs so much today. In total we buy for my mom, sister and her husband, his parents, his sister and baby, and 3 nephew's and nieces plus I am sending a package to my nephew who is deployed during Christmas. No wonder it adds up! I guess I never thought one gift was enough because I always go overboard. I really really need to stop that mentality. I am trying this year....I really am! How much do you spend? I used to just give $20 to the older niece and nephews but the last year I started being more personal but it definitely cost more!

I got some free stuff at Target this week! I love the drug store deals but I love getting products for free just by using coupons so much more!! You have to print Target coupons (off their website) and combine them with manufacturers coupons to get things for FREE! Here is what I got: 3 TGIF frozen meals for one FOR FREE, 5 travel Johnson & Johnson first aid kits FOR FREE (well I actually made $.15), 4 bags of Purina cat treats for FREE (well I actually made $.32), and 1 Rimmel eye shadow for FREE.
TGIF were on sale $1.99 use $1 T coupon and $1 M coupon to make $.01
First aid kit just use $1 M coupon and make $.03 each
Purina Cat treats B1G1 T coupon and $1.50 off two Purina cat treats coupon and make $.16 on two bags
Rimmel eye shadow $1.52 use $1 T coupon and $1 M coupon combined with overage from products I just bought made it free!

I now have 7 bags of Purina Cat Treats to donate to our local animal shelter and am so excited to do this!!

Tuesday, November 29, 2011

Happy Birthday Brendan!! Missing my Dad

Brendan turned 9 years old yesterday!! Every year seems to fly by. I can not believe he is 9 and next year we hit double digits!! I am not ready for the next 9 years. He is heading into his teenage years. That seems insane!! Okay I know I have a few more years before that but lately he is maturing before my eyes and becoming this young boy that I never thought I would see.

He loved his birthday. We had a family party and he had a blast. He can open presents without any help now...must have the been all those years of practice. I think this was his first birthday that he genuinely enjoyed all of his gifts. Usually we don't even open half of them for weeks because he shows no interest but every single present has been opened and played with.

Maybe we are all learning who Brendan really is or maybe he is just becoming more 'typical' as he ages. I am not sure but I am loving this little boy that is growing up on me. He can play by himself in his room. He watches t.v. in bed and can actually have the remote within reach and NOT press a million buttons. He even shuts off his t.v. by himself when he is ready for bed. The past year has been really humbling for me. So many changes. So many good things. I am so impressed by my own son and I know part of that is due to our parenting and helping him become who he is today and part of that is his determination to be like everyone else.

Before my dad passed away he told me I was doing a great job with Brendan and he knew I had a difficult life. He told me he was proud of me which he never really said to me throughout my life. I am thankful for the last conversations we had. They really helped me let him go. I miss him and these holiday's are not easy. I know my mom must be having a very hard time. I know everything will get less painful as the years go on but right it is very painful. I cried while making apple pie for Thanksgiving because a few months ago my dad told me he meant to text me to tell me how good my apple pie was in hopes that I would make him one. Well I am glad I did make him his very own the next time I went to visit. The little things just pop up and bring sadness to me. I hope that fades. It is hard to even see a picture of him or think of him without crying. I know it has only been 2 1/2 months but it seems like yesterday he was still with us. RIP Dad.

Wednesday, November 23, 2011

We have had a breakthrough! Playing on is Own!!

Brendan still has accidents on occasion. He doesn't get in trouble for having an accident since he can't exactly run to the bathroom. He does get in trouble for not telling us because we don't want him sitting in it. This has been going on for over a year now possibly longer. Two weeks ago I said to my husband "he just isn't getting it, we are doing something wrong because he just doesn't get it, we have to figure something else out". We have taken away his t.v. for two days, his power wheels, the computer.... basically everything he loves for not telling us, hoping this will make him tell us. Two weeks ago he had an accident and Derek took away his t.v. yet again. We both had long talks with him about why we took it away and we kept reiterating that he wasn't in trouble for having an accident but for not telling us. We had him practice telling us "I had an accident" over and over and over. Derek actually felt bad after our discussion of him just not getting it and gave him back his t.v. the next morning.
Fast forward to yesterday morning....Derek went to say goodbye in the morning before work and walked into his room and immediately Brendan said "I had an accident" WOO HOO!! This was a moment. When Derek told me I was beyond proud. I really thought he would never get it but he finally did! I went down to say good morning and he told me that he had told Derek. He was so proud of himself and had a big grin on his face wtih his t.v. on. :)

Moments like this can't be completely understood by parents with typical children. These moments are huge milestones for our children. I am so proud of him and all of his hard work. He continues to progress every single day. Lately he is maturing and becoming this amazing young boy. I get teary eyed writing about it. I love that I get to feel this way as a parent. Life is hard for him and it is hard for me to watch at times because everything is a struggle but moments like these make me realize he will be okay growing up in this world. Baby steps people baby steps. :) I told my mom and she was laughing at the situation and said "it is always the little things". Yes it is mom, yes it is.

Brendan as usual continues to amaze me. He has actually been playing by himself in his room on his floor for an hour at a time. He is back into his tools and geo trax. Hint: geo trax train is great for our kiddos with limited hand control. He has been banging away on his train table (fixing it) with his hammer and has a blast!! His room is a mess and it is actually from him not his sisters. he has train pieces everywhere, tools and his laptop on the floor. He is pretend playing and that is wonderful for both of us. What an amazing year this has been.

Thursday, November 17, 2011

Deal of the week! Garage issues and I miss my BOY!

Shaws has a great deal this week. Buy ten Betty Crocker items and get $5 off instantly. Combine this with coupons that double and you make out. I bought 21 items and paid just $10. The picture I posted only cost me a total of $35. Lately I am able to cut my usual budget of $150 per week (to buy food and household items) to around $70. The picture shows 8 pillsbury grand rolls, 3 fundamiddles, 2 cake mix, 2 frosting, 4 packages of cookie mix, 2 boxes of potatoes, 3/4 lb. of fish, over 2 lbs of chicken, 3 packs of english muffins, chocolate milk (for my husband), juice boxes, jar of pesto sauce, two zone bars, can of chefboyardee, and a box of breakfast bars. That is a $1.06 an item. Ya I can deal with that!

We built a huge garage. 28 feet long to be exact and we are having space issues. We are having issues parking both vans and being able to open up Brendan's ramp and get him off. Seriously who knew? How could this garage not be big enough. Well once you throw either a lift or ramp in the garage and fit both vans in you are left with one foot of space once the van ramp is open which simply doesn't work. This garage is not cheap so it is kind of a bummer that we both can't fit and get Brendan in and out of the van. Maybe we can come up with something. My contractor is amazing and super helpful so we are brainstorming.

Brendan left me for a week! He went off to FL with his dad. I am sure he is having a blast but I am not used to not having him here. I will admit that it has been a little vacation for me. The girls are fairly easy now and self sufficient. Grama even took them overnight last night so I got to stay in bed until 8:00 today. The builders start at 7 so there isn't much sleeping in around here but I just stayed in bed because I could. It was lovely.

I have been working on hiring my pass worker. I have two interviews next week. I even had someone going to school to become a PT so I am very excited. I hope we click because I like her already after reading her email.

Friday, November 11, 2011

Sometimes I almost lose my sanity! ADHD is not easy...

I think dealing with the ADHD is beyond harder than cerebral palsy. Some days I am at the brink of a mental breakdown. He can drive me batty in the matter of seconds depending the day. If we are stuck in the van together on one of his bad days it is not pretty. The girls hate when I yell and I don't like yelling but sometimes nothing works and I lose control of myself. I try asking him nicely, I try taking away anything that is causing bad behavior, I try threatening, I try taking away a favorite item....some days absolutely nothing works and I lose. I think I need a class on how to handle my child with ADHD. I can't stand when my kids don't listen and when it involves banging, slamming doors, or hitting the keyboard aggressively I flip out very quickly. Some days I can control it. Some days it doesn't bother me quite so much but other days I go bazerk. If this kid could run I would be in trouble!
Can you guess I am home with 3 kids all day due to no school?? Right now he is opening and closing his bedroom door over and over...actually slamming it and he has things hung on the door knob so it jingles along with the bang and I am really really trying to ignore it. I have asked him not to do this at least 20 times today. I give up. Like I said sometimes nothing works. I am not sure how I made it through the summer.

Sunday, November 6, 2011

Birthday Boy! Deals of the week!

Brendan is turning 9! How can that be? How have I been a mother for 9 years?? I think back to the day he was born and can not believe where we are in life today. Life certaintly did not turn out as intended but does it ever? I never expected to be a mother to a disabled child but now I can't picture life any other way.

Years ago we never knew if Brendan would talk, ambulate on his own, or go to a public school. Today my boy is doing amazing and he never stops progressing. He doesn't stop talking and he is learning new things everyday. We have been through so much together and have the most amazing bond I could ask for. I know I can handle just about anything after handling these past 9 years. Yes I have my moments. I do cry. I do feel like life is unfair at times but in the end I really wouldn't change my life. Would I want my son to experience life easier...YES! Do I wish he never had to endure all those surgeries...YES! Do I wish he could walk or stand without his walker...hell ya! But I don't dwell on this everyday. I don't look at him and wish he was different. I look at him and smile and feel beyond proud of this little boy who has come so far. Brendan has this personality that will change people's perception of disabled people. He already has! I can not beleive how much he has overcome over the past 9 years. I am so proud of him. I can't even begin to imagine what our lives will be lilke when he is 18. He was born on Thanksgiving and his Birthday is on the 28th and I am excited to celebrate another great year!

Deals of the week:

Rite Aid: Two Colgate Toothpaste Cost $3.50 Rewards $3.50, you can buy two and use a coupon $1 off two and make $1. Stay Free Pads cost $3, rewards $2, you can buy two and use 2 coupons $1 off one and they are free. Buy Two Orajel kid toothpaste Sale Buy 1 Get 1 (Cost $3.99 for one and use 2 $1 off coupons) and two Oral B toothbrushes B1G1 ($8.99 and use 2 $1 off one coupons = (get $5 reward if you spend $10. I spent 12.98 and saved $4 in coupons). Kerri lotion Cost $6.99 get $6 reward, use $1 coupon to make it free! Total out of pocket cost $25 (with tax) but I got back $22 in rewards which means all that cost me $3.

FREE ITEMS Just With Coupons!

Walmart: Shick disposable razors Cost $1.97 use $2 coupon and make $.03. Red Cross travel first aid kit Cost $.97 use $1 coupon and make $.03. Travel Tide detergent Cost $.99 use $1 coupon and make $.01.

Target: Print Target Coupon on their website for $1 off Hungry Jack Pancakes, buy the 7oz pouch for $.99 and make $.01.

Wednesday, November 2, 2011

Deal of the week! Happy Halloween and Special Olympics!

Coupons take up a lot of time from cutting to sorting to storing to figuring out the deals!!! UHHH but it is soooo worth it. At shaws I ended up getting 6 bags of Doritos, 6 jars of gravy, two large bags of Tyson Chicken Nuggets, 4 frozen TGIF meals for one, 3 cookie dough's, a bunch of bananas and a large tote of apples for $30 and then I got a $5 coupon back.

Happy Halloween Everyone!! Brendan was Batman...again! That kid loves being batman. We tried giving him other options but he would yell BATMAN after every character we said so batman it was. He really enjoyed trick or treating this year. He was happy as can be being wheeled up to each house. He would say trick or treat and you could even understand him this year! Our neighborhood was super busy so lots of houses ran out of candy. The houses with lights on became 'candy houses' and the kids would yell there is a candy house! It was cute. My husband even got home from work on time to come with us!

The first season of Special Olympics wrapped up this past Sunday. Brendan had a blast. It was a bit chilly so it was in a gym. They received a medal at the end which he loves. We made it to every session and it was a great experience. Pictures will be posted in the blog!

Friday, October 28, 2011

Equipment is being ordered!!!

I ordered some equipment for Brendan's therapy room this past week. Since everything takes at least 6 months to come in it should work out perfectly. I ordered Brendan a Rifton dynamic stander. I am so excited for this one. He can stand and wheel around the house while standing. I knew we had to have this as soon as I saw it. It will be great for his leg muscles and I will be able to keep him occupied so much easier than with a typical stander.

I ordered a wheelchair multidesk so he can work on his homework, computer, or just play with toys. He can wheel right in and sit comfortably. He has a t.v. tray in his room now and he doesn't look comfortable at all while sitting at it.

I also ordered a new kaye therapy bench since he outgrew his last one. Insurance won't cover exercise equipment...go figure. Isn't exercies what these children need to gain strength and overcome challenges in life? Why will they cover a $3000 stander but not a treadmill? It doesn't make any sense to me. Anyway I will buy him a treadmill with front and side handrails. I already have a huge therapy mat, a yoga mat, and a bolster so I think his therapy room will be set!! I am super excited this is all coming together.

I took out a bunch of books at the library to get more ideas for his bathroom. I want it perfect for him! My contractor is amazing and is really trying to make sure everything fits nicely and works out for us in the best possible way. He spent an hour here the other day just measuring inside the garage. It looks like we have to make some changes with door placement due to the ramp in the garage. It is causing some tight areas so we may go with a verticle lift instead. I guess they cost about the same by the time you are done. It will take up much less space and I won't be worried about hitting more door into a ramp everyday.

I have no idea what our house will look like in 6 months. It will be so different but life will be so much easier. Brendan will learn to do many more things independantly. He will be more comfortable in his wheelchair and get the therapy he needs!

Friday, October 21, 2011

PASS Program and Brendan does NOT need Botox!!!!

I had 4 appointments yesterday, three involved Brendan ~ the story of my life! I worry sometimes that I revolve my life around him too much but sometimes I realize that it is simply impossible not to.

I finally was able to go to my training program for PASS yesterday. I have been trying to go for months but the timing has never worked out for me. The PASS program lets me hire someone to come to the house and work with Brendan for up to 20 hours a week. I struggle with the thought of this but as life goes on and becomes busier I realize it may be a good thing for our family. I worry the girls will one day resent Brendan for steeling so much attention. As it is he has Therapy on Thursday, (sometimes in the pool with jealous girls watching) hippotherapy on Saturday, (where he gets to ride a horse) and Special Olympics on Sunday. None of these things cost us a dime and are all great for him but from a siblings point of view I am sure they look like all fun activities that he is involved in. They are involved in nothing because we simply can't afford gymnastics or dance class. I will work on this because I feel it is important that they have some activities as well. Actually Chloe is involved in girl scouts so she does have one activity. phew! :)

Part of me worries that his sisters will see this as something else Brendan gets but I hope in the end it allows me to shift some of my attention onto them. Basically I hire a worker which the state pays and we come up with an IEP (basically) for him. They work on three maing goals with him: self help skills, socialization within the community, and safety. I am excited about this change in life and I really hope I can find someone our family really meshes with. I hope I don't feel guilty someone else is working with my son while I am home. That is something I have to get used to. I have to realize sometimes I am not superwoman and sometimes this life is difficult! I honestly hate admitting that!

Botox ~ Brendan had PT yesterday and then his 6 month appointment with his neurologist, they are in the same building. We were there for 3 hours but Brendan did amazing. He loves everyone that works there since we see them once a week. Everyone also loves him and gives him special treatment. The neurologist's assistant constantly gives him a special snack after his therapy and always comes to say hi to him. He has a little crush I think. He wheels around like he owns the place. He colored a picture for the assistant and she hung it up near her computer, so cute. The Dr., his physicaly therapist, and I all agreed that he does not need Botox yet!! It has been one full year since his last round. He has gained so much progress since his PERCS surgery this past April and we are still seeing the benefits. I am super excited. I am so happy he doesn't have to be put under in the near future and super happy he doesn't need this because his legs did not get tight enough to need it. He is gaining strength and walking better than ever before. He hasn't walked well since his major hip surgery when he just turned 5. I am finally seeing major improvement and am very impressed. Recently he started walking a little odd but I realized he is walking this way so he doesn't trip over his feet. He is compensating all on his own which is huge for him!

I was feeling overwhelmed yesterday after the PASS meeting. Sometimes the reality of life hits you but I wound up having a great night with some weight lifted off of me. This child of mine is amazing and has come so far in life and I know that isn't stopping anytime soon!

Wednesday, October 19, 2011

Coupon deal of the week! Flat Tire & My Back!

Coupon deal of the week for me was at Shaws! My total came to $73 after all savings and let me tell you I was nervous. The budget was very tight this week and I didn't want to spend much. Just by using coupons my total dropped to $37 and I got a $10 coupon to use next time!! I impressed myself. Just from coupons I got 2 free toothpastes and 4 cans of tuna.

Deal of the week: Shaws had an offer...spend $25 (after all coupons) and get a $10 coupon towards another transaction. I should have broken up my transacations and used the $10 towards my other items but I hate doing multiple transactions. I apparently will never be an extreme couponer!

What did I buy: 6 boxes of green giant vegetables, 3 boxes of toaster strudles, 6 boxes of brownies, 4 boxes of pizza rolls, 8 boxes of fruit snacks, 1 macaroni grill boxed meal, and 4 boxes of betty crocker instant scallop potatoes.
These items came to $28 after coupons so I got my $10 back which technically means 32items cost $18 or $.56 an item.

Only 4 like coupons will double at this store so you have to be careful how many of each item you buy.
Coupons used:
$.35 off one pizza roll which doubles
$.75 off two boxes of brownies (which double)
$.50 off two boxes of fruit snacks (which double)
$1 off 3 boxes of vegetables (used two)
$1 off 3 toaster strudles
$.75 off macaroni grill dinner (which doubles)
$.50 off two boxes of potatoes (which double)
Total coupons used just for this section: $17.80

Yesterday I got a flat tire. I have to drive over 30 minutes to pick up my son to drive back over 30 minutes to bring him to school when he visits his dad mid week. I wasn't in the mood as it was this week and then I get a flat tire. I had 5 YES 5 screws in my back tire. This tire was obviously unrepairable and cost me $321!! So much for saving with coupons this week. I questioned why I bought the sport van when I found out exactly how much this one tire cost. Not to mention no one had the tire in stock, not even Toyota, Thankfully Town Fair Tire was able to get it delivered that same day. I was 45 minutes from my house so we hung around the area all day. Brendan even got to skip school. My x husband met me at a gas station and actually changed my flat for me!!!!! I was shocked. He doesn't usually say two words to me nevermind help me out. Some other guys that were making a delivery at the gas station even offered to help (before my x arrived) which was awesome. People aren't usually nice around here. My x was struggling getting the tire off and a person delivering gas helped us out too. I must say I was impressed with everyone helping me out yesterday. :) I honestly do not think I would have gotten that tire off myself. Although you never really know what you can handle when you have to.

It was nice to spend the day with two of my kids. We had to run around searching for a tire but then we had to go to the DMV which surprisingly didn't take much time at all. We then went out to lunch together at Subway and walked around Target. The tire was due in after 1pm so we headed back and hung out there for a while.
Overall it was a good day except today my back is killing me!! I lifted Brendan way to much throughout the day. I counted a total of 13 times getting his wheelchair in and out of the van. However, I probably couldn't have gotten out of bed today if I was actually lifting that wheelchair and him into and out of my old van all day! So I am beyond thankful I have my handicap van even if my tires cost over $300 each. I am not looking forward to replacing those bad boys!

Today is supposed to be rainy which means me and Makayla are relaxing! I will probably clean and do laundry but we are not leaving the house!

Thursday, October 13, 2011

Coupons Coupons Coupons!

I have been couponing for the past few months. I am not entirely sure when I started. I don't think it has been 6 months yet. I already have a stock pile in my basement. I spend less each week than I used to yet I have so much more food and household products. It feels great!

I quit my job in February so I could care for Brendan after school. He had no where to go after school anymore. There are hardly any places for disabled children to go. I have no idea how parents work full time. I guess we could have tried to work opposite shifts but I am a total family person so I wouldn't be happy. I decided to coupon to save money and buy more for our buck. We have a tight budget every week and lately I have been under budget.

Next week I have a goal at one grocery store. I will buy 26 products from fruit snacks, toaster strudles to a Macaroni grill dinner for $17. Once you start to coupon and have a stock pile you can shop based on sales combined with coupons. I still have to buy my fresh produce and meat but in the end almost everything else I buy is just to stock up on. For example I have 14 jars of pasta sauce, over 30 boxes of pasta, 13 bottles of bodywash, 7 shampoo/conditioner/16 deoderants and on and on and on. I get toothpaste, floss, toothbrushes for free. I usually pay around $1 for shampoo, deoderant, body wash, razors and other items. It is really amazing what you can do with coupons. I might post a deal of the week each week if people are interested!

I will post some pictures of my stockpile. :)

Wednesday, October 12, 2011

Life has been crazy!

Some things I don't feel the need to publish yet but lately life has taken a toll on me. September was not a good month to say the least. I am trying to push through and continue on happily like I always do. I am getting there.

Fortunately we have a big project going on to keep my mind busy. We are putting an addition on for Brendan. We are renovating his current bedroom into a handicap accessible bathroom and adding a new bedroom and therapy room attached. The process has started. It is a bit overwhelming and will continue to be so I imagine. I am not the best at making decisions so I am sure once they start inside I will be beyond overwhelmed! Brendan loves watching the big machines come in. He calls them all workers and loves to knock on the window and say hi to them. He loves when they wave back. He loves the trucks and all the commotion. He has begun to bang on our house walls again as he did when my brother in law did some small projects for us in the house. He is excited about his new bathroom and bedroom. He pretty much ignores the therapy room.

Brendan will basically have his own wing. A space for him to grow into. I am sure he won't do therapy forever so that room can become his own space. Maybe we can even put in a small kitchen one day so he can live at home but independantly. Only time will tell. I am thrilled we can do this for him and he can learn to become as independant as possible.

Tuesday, September 27, 2011

It has been a while

I haven't been posting because life was difficult for a while. My father passed away from cancer. Cancer came on sudden. He had been struggling with health since he had a heart valve transplant two and a half years ago. I have shed many tears over my father's health. We thought he was going to die many many times over the past few years. He had been in and out of the hospital. He almost didn't survive the surgery. His heart crashed four times during one stay. He got pneumonia. His lungs kept filling up with fluid. He had and a very fancy pacemaker installed that basically shocked his heart when it stopped which did happen. It has been so hard watching him decline. He was only 57 when he had the heart surgery. He became very old over the past few years. Then cancer had to rock our world. He was diagnosed almost six months ago. I had mentioned a family illness in a post once but my dad didn't like to discuss his health publicly. He didn't want the sympathy or for people to feel bad for him. I understand where he comes from. I just operate a little differently.

He fought hodgkins lymphoma at age 20 and almost died. The cancer has been in remission for so long and decided to rear it's ugly head in a new very nasty form. There was no treatment. No hope. He went downhill very quickly. My sister moved her wedding up so he could attend and we are all thankful because he wouldn't have been able to attend one month later. My mom took care of him until he died. He was able to stay in his house. I visited weekly with the kids. It was so hard to watch him die. It was hard to watch him lose his dignity, his strength, everything but his mind. I am thankful for that. We talked for hours and he was able to say his goodbyes months before he passed. He had his ups and downs and we never really knew when he was going to die. He passed away on my Birthday but he was a fighter. The cancer was in most of his body when they found it. His spine, bones, lungs...just everyhwere. He was given a few weeks to a few months. He lasted almost 6. It know it was hard for him to hang on so long but I think we are all thankful we had those last months.

Goodbye dad. You can finally rest in Peace. We buried him yesterday because he was cremated. He is gone forever now. It is very hard to lose a parent and now my sister and I have to take care of my mom which we question!

RIP Dad 12/27/51-9/15/11 He would have turned 60 this year and my parents would have been married for 40 years.

Monday, September 12, 2011

My baby is turning 4! Special Olympics!

I can't believe my youngest is turning 4 years old! Brendan has always loved his little sister to pieces. They are super cute together. She wants to go to Chuck E Cheese for her birthday so we will all go there to celebrate over the weekend. The kids love playing the games so they will all really enjoy it. We need to go Apple Picking too! We tend to go too late every year. Apple picking just sneaks right by us. We like sticking to yearly traditions and this is one of them so we will have a busy weekend.

Two mom's started a Special Olympics program in our town. I am the treasurer but haven't had to do much yet. We had 15 kids join right away so we are at our max right now. They range in ages from 4-9. They don't compete yet but the kids are really enjoying it. They meet every Sunday for 9 weeks from 3-4pm. Each child has a buddy or two that helps them with the sport. This is great because I am not involved with Brendan. He has been doing great with me just watching him. It probably helps that his niece volunteered and works with him but years ago even that wouldn't have worked out! I am very proud of him. He LOVES it! He shouts "I'm gonna win!" and then when he gets the soccer ball into the net, "I win!" The first day he looked up at me and said "mom, I am plaing soccer!" with the biggest grin on his face. That was pricelss. He loves being part of a team and the fact he is actually playing sports. They play tennis, track and field, and soccer. It is really great to watch. We have 19 volunteers just to work with the kids and then we have coaches who also volunteered for each sport. It really is amazing to see everyone pull together for these kiddo's! I will post a few pictures now.

Thursday, September 1, 2011

5 Things no one tells you about raising a child with special needs

1. You will have a very special bond with your child that you can not explain. Maybe it is from all the hours you spend together at Dr. appointments over the years, numerous hospital stays, hours upon hours of therapy sessions or just researching and over analyzing everything about your child. Whatever it is, it is beyond special.

2. You cherish every single milestone no matter how small more so than with your 'typical' children. It sounds bad but it isn't. When your special needs child sits up on their own, says their first word, or is even able to feed themselves with a fork it is a HUGE milestone. I still get beyond excited when he does something new or even talks with improved sentence structure. I think it is because we know how long and how hard they tried to get to that point.

3. You have less sympathy for your other children. After seeing your child endure major hip surgery and where a spica cast for 6 weeks you don't baby your other children as much when they scrape their knee or take a tumble, at least I don't! I take care of them but I also teach them that they are just fine and it only hurts for a minute.

4. You become a helicopter mom but never admit it. You are involved with everything in their life way more than you ever anticipated. Between school, therapy, and meeting around a hundred doctors over the years you know way too much about your child and it probably will never stop.

5. Last but not least.....You become a Supermom! You can handle up to 7 appointments in one week. You learn how to give your infant a bottle so that they don't choke, you can lift a 45 lb wheelchair up a curb or into the back of your van, and you can somehow carry your 45lb child (that doesn't hold on to you in any way) into a store, buy something, and get them back to the vehicle without passing out or dropping them! You try and do everything that you would do if you didn't have a disabled child even if that means you will be exhausted by the end of the day or the end of that vacation. You try and give your child the best life possible. You make them wear horrific night time braces but also give them breaks from them every so often. You punish them just like you would any other child when they disobey or are disrespectful. You do it all and then some because you are a Mom~one very special Mom!

Monday, August 29, 2011

School starts in 3 Days!

Wow this summer flew by. We will have two second graders this year. My youngest won't start Kindergarten for another two years because her Birthday falls on September 20th! She is so smart so I feel like she will be bored with school so I am going to try and fight for her to go next year but I think it is highly unlikely I will win.

We have been busy bees as always. Brendan went on vacation with his father last week to NH. He goes every year. I decided to take the girls on a road trip since my husband has been working so late every night. It is hard to do some things with Brendan so while I felt really guilty I knew he was having fun with his dad. I also really wanted to take my youngest to an amusement park. She hasn't really gotten to go. We brought the other two a few times and she was really young and doesn't remember and couldn't ride on much. So off to Sesame Place we went for two nights. It was a great time. It did rain the entire first day but that meant no lines. We rode every single ride multiple times. The water slides were a lot of fun. I loved watching my youngest enjoiy everything. She even danced in the parade! She is so cute and loves to dance. She is very outgoing, will do anything type of kid. The one we need to watch out for when she is a teen! I love that she is outgoing because I was a super shy kid like my stepdaughter who wouldn't go dance in the parade and then wished she did. I so know how you feel kid! It was a great girls trip and I am so glad I went because my youngest had reactions that were priceless. I could have rode the roller coaster all day just to watch her face and here her laughter. She put her hands up in the air for the entire ride every single time! OH BOY!

Friday, August 19, 2011

Out and About

Since we have gotten the new rampvan I have been out and about so much with the kids. It really makes small trips seem less daunting. It doesn't wear me out physically and Bren is really happing riding in it.

My husband got a new job and has been out really late all week. He got home after 8pm twice and who knows when he will be home today. He leaves by 7am so I am having some very long days with the kids. Brendan's ADHD was horrible this week too so he was testing me often! Today I took the kids to bumper boats and we got drenched but it was alot of fun.

Monday, August 15, 2011

It has been a while! AND an Exciting Purchase!

I feel like since the kids got out of school I haven't had any time for myself let alone computer time. I apologize for the lack of posts lately.

Brendan's elbow is still healing! I can't believe how long it is taking. So far so good but his father told me it did start bleeding over the weekend so I am worried.

We just got back from our camping vacation this past week. We went to a luxery campground called Pine Acres in Oakham MA. It was a good time. It rained alot and I was so thankful we had our pop up camper this year. I went outside and sunk in about a foot of water and really couldn't imagine having a tent to sleep in during those conditions. The only downside is that the rain is beyond loud hitting the popup and my husband and I were wide awake for hours. At least we were dry!

We broke down and bought a handicap accessible van! I am so excited. I am still in the process of registering but Brendan gets to ride in it today for the first time. It should be interesting and it is raining but I am excited to not have to lift up that wheelchair into the back of our old van any longer. It is a Toyota Sienna and the van is amazing! The front seats come out so he can either drive when he is older and capable (not looking forward to this!) or sit next to me as a passenger in his wheelchair. We chose the one without carpet. It has a pretty cool floor that won't get all dirty and nasty from his wheels. I love it so far but ask me after today how I really feel about it! I just hope I can attach him into it on my own! I am a bit nervous.

Tuesday, July 26, 2011

Brendan is on the mend! 4 ER visit's later....

Well his elbow is finally healing! He had a staph infection and although he tested - for MRSA it seemed to be just that. It was the same type of bug that causes MRSA and it started healing soon after he begun new antibiotics that destroys MRSA sooo who knows. I am just happy his elbow looks better. It is scabbed over in fact. WOOT WOOT!

We missed my entire step daughter's birthday party because he was almost admitted at the hospital and put on IV antibiotics. We were at two hospitals from 10AM to 3:30PM. It was a long day! We switched ER's because of where his pediatrician sends her patients and instead of admitting him they switched his antibiotics and let us go home. We were both very happy to go home instead of spending 3 days in the hospital. :)It was a scary week. A spot started appearing on his leg and his arm had a tiny scratch that blew up so something was going on in his tiny body. I was starting to freak out but thankfully my mom is a nurse and helped me calm down by reassuring me he would be okay.

I am actually kid free for a few hours. My youngest stayed with my parents after we visited yesterday, Brendan is at school for a couple of hours and my step daughter is with her mom. So I spent some quiet time weeding the front yard and decided to prune a bush. I am snapping away when all the sudden I hear bzzzzzzzzzzzzzz so I RUN! They chased me and got me twice. :( I am glad I ran because they were mad! Who knew bees lived in bushes. UHHHHH!

It is never a dull moment in this house!

Thursday, July 21, 2011

Life of a SAHM

Life has been a bit hectic around here and at times I can't believe how much I can do. My husband thanked me last night for being super mom ~ that was really appreciated and made me realize I WAS super mom yesterday!

Brendan came down with an infection in his elbow. He scraped it falling off one step a few weeks ago. I constantly cleaned it with proxide and it healed nicely so I have no idea where this infection came from. I noticed his elbow was not looking good Monday morning. I kept saying I didn't like the looks of it but my husband said it is probably just a bug bite and he has scratched it too much. I thought otherwise and my fears came to life the next evening. It looked worse and had puss coming out of it now. We went to a walk in clinic which I was NOT impressed with and they told me it was an infection and prescribed him antibiotics. I thought we would be in the clear until the next morning when it looked 10x worse! I new it was time for an ER visit. SO THIS IS MY SUPER MOM DAY:

Brendan woke us up at 5:50 am standing next to his bed and since he couldn't go anywhere from there and was calling us. I checked his elbow since we had it bandaged up and it looked really really awful. I didn't understand how it could look so much worse from 8pm last night. I knew I had to bring him to the ER so I got the kids up bathed, fed and ready to go and off we went. My AMAZING 17 year old neice came and picked up my youngest at the hospital at 8AM...She is beyond awesome! My stepdaughter was with her mom that morning so thankfully I could focus on Brendan. 2 1/2 hours, 4 x rays, and 30 minutes of my poor boy going through exruciating pain while they opened, drained, and packed his infection we got to go home! We raced home and I immediately wrapped my step daughters birthday presents because of all days TODAY IS HER BIRTHDAY! I quickly dirty iced a cake (that I had made the following evening after I got home from the walk in clinic), fed us lunch, and then we rushed off to the mall. We were meeting my niece who still had my youngest daughter and my stepdaugther with her mom because today she was getting her ears pierced for her 7th Birthday! I couldn't cancel or miss this and Brendan was up for it. She did amazing and they look so nice!
We headed back home so I could finish icing and decorating her birthday cake. My husband got home so we let her open presents and then we all headed outside to watch her ride her new power scooter. I then realized our kitchen trash can was still outside waiting to be cleaned from the previous day. I also realized that some outside table and chairs had to be cleaned with bleach for my step daughter's party on Saturday so that is what I did.
We headed back inside to make dinner and have cake and ice cream and then I was DONE! It was almost time to relax....we just had to get some kids into bed.

What a day! How did I do all of this working full time??? that is the question. I have no idea! I am happy to be a stay at home mom.

Wednesday, July 13, 2011

Enjoying the Summer~

This past weekend we set up the blow up water slide and the kids had a blast! They played non stop for 5 1/2 hours. The neighbors were over all day long and really had fun. I had bought water squirters at the dollar store which were awesome amusement and they kept Brendan entertained for an hour. He could actually suck up the water and squirt it. He couldn't really aim at anyone but I bet he will in time. The kids created obstacle courses and my husband timed them. Brendan loved cheering them on and yelling ~ "ready set go"!!!!

Brendan started riding his power wheels again. He calls it his go cart. He kept asking for a go cart for his last birthay but we decided on something a bit slower and with two seats. When we surprised him with this he was so happy and yelled "A Go Cart"!!!!!... so at least we made him happy!
His driving is ten times better this summer. He was stearing it all on his own. He drove on the road and I barely had to help him. Even his step sister was impressed. Our mailbox is across the street and Brendan likes to drive to go get it but he ended up driving too far down the road and all the sudden he turned around perfectly in the middle of the road. I asked him what was he doing and he replied I forgot to get the mail and parked the car right in front of the mailbox. I was so impressed! I even let him drive around the yard without walking next to him and he did AWESOME! He did crash into lawn chairs once but with some yelling he didn't do it again. He drove over this huge rock we have in our yard which freaked me out. I was running towards him yelling Bren don't!!! I didn't make it in time but he drove over it just fine and I think he actually planned it because he yelled "I did it"! after he got over it. Derek would always drive him over this rock but he would be steering and walking right beside him!

This kid always impresses me. Seriously, he is growing up on me. He is becoming more independant. I am not sure if PERCS is the reason but he has changed so much since the procedure. I don't know if it gave him more confidence or if his brain can focus on other things now but he is a different child for the better.

Monday, July 11, 2011

How MY life is different

Running out to the store just to get milk with a child in a wheelchair is not as easy as it seems and is avoided at all costs!

My back, arms, and neck often hurt or are soar and it is just part of life now. I remember one of Brendan's PT's telling me that one day my body would start to feel it from lifting him and all his equipment. I didn't think that day would come so fast.

Weekly 45 minute one way commutes to therapy have become part of my routine and I don't even think about them anymore.

I have constant guilt when I don't exercise and stretch him everyday but sometimes the days get away from me.

Family vacations have to be thought about before booking because we can't just go anywhere. Not to mention there is only two of us and 3 of them! Maybe that will get easier as the girls get older.

I recently realized I need to start asking for handicap accessible rooms because recently we were placed on the 2nd floor and carrying his wheelchair up a flight of stairs should never happen again if at all possible.

When I had my first child I had no idea how many times in one week I would have to bring my kid to the bathroom and I honestly don't look forward to how many more times that count will become over the years.

Last night I wished out loud to my husband that 'he could get his own pajamas on'. I did not feel like doing it at all! I realized this dream is far off when he couldn't even get his shirt off.

Our library is NOT handicap accessible yet we are going today because all 3 kids signed up for the summer reading program. I don't feel right bringing the other two to pick out books without bringing him. Sooooo we go today which means I have to carry him down a flight of stairs and then carry his walker. Why not add to my soar neck today?

Wheelchairs effect everyday activities and decisions. Walkers effect everyday activities and decisions. Having a child with a disability effects everyday activities and decisions but I will continue to try and do everything I possibly can with him because I want him to experience life like every other child.

I think I will just have my husband go grab that milk for me! :)

Wednesday, July 6, 2011

Mohawks and Legos

Gotta love his Mohawk. His father was constantly buzzing his hair off and I could never do anything with it. I found a great place that can cut his hair without him freaking out. Snip-its is awesome. They have practically silent buzzers along with t.v.'s and video games to keep the kids occupied. So far he has not freaked out getting his hair cut there. I thought he just grew out of it and brought him to a barbor shop once and that was a huge mistake. He almost didn't get his hair cut and then almost had half a head cut so never again! His hair is finally long enough to spike, mohawk, or just do whatever. I think he is one handsome boy!!

Brendan loves legos. It is the one toy that will keep him occupied for an hour. It is great for fine motor skills as well. He used to only use one type of piece. The small square but now he is using different sizes and colors and building them in different directions! He has been playing with them for over a year now and he just started doing more. He loves when his sisters join in and play with him since they are usually off doing there own thing. He used to just build tall towers straight up and now he uses a little lego board and builds 'castles'. I am very proud of how far his lego skills have come. He has no idea it is great therapy too!

Saturday, July 2, 2011

I can do it!!!! &&&&& Big additions going on here

I had two very hectic days with the kids. Thursday two people came to the house at 10AM to discuss a PASS program. Basically the state will pay for someone to come to the house for up to 20 hrs a week. I can hire the person and they work on three main goals with Brendan like self help skills, safety skills, and social skills. I have to be around 50% of the time but the other 50% they can do things with him. I think it will be great for him to spend one on one time with someone other than me! I can use the help at home too since he demands most of the attention. Afterwards we trucked it to visit my parents which live 1 1/2 hrs away. We spent a few hours there and headed off for Brendan's PT apt. Then home. I was EXHAUSTED but it was a great day and the kids were perfectly behaved even waiting for his hour PT session to end.

Yesterday I took the kids to a magic show which kicked off the summer reading program. Afterwards we headed to a playground for lunch and then the zoo. The zoo had free admission yesterday so it was mobbed and I could barely find parking. Thankfully I had my handicap pass and we found a spot about one mile from the playground. I sat Makayla on top of Brendan's lap in his wheelchair and off we went. They sat so well together. Brendan didn't bother her and held on! I was a very happy mama. We ate lunch and played for a bit and continued our walk to the zoo.

Why would a zoo have a carasoul and train ride as soon as you enter???? To make money! We had to go back into the gift shop to purchase tickets which was mobbed and really had no room for a wheelchair. Bren did awesome and stayed still in his chair and picked out lollipops for him and his sister. I couldn't believe it. We saw a few animals and then waited ONE HOUR to ride this pathetic train haha. The kids were amazing. I met a nice mom in line and she held my spot so I could bring Bren to the bathroom about 1/2 hr in. I couldn't believe the kids lasted an hour in a line without me ripping my hair out. They really wanted to ride and were find with the wait. We then immediately waited in line for the carasoul ride which went much quicker and some eye in the sky was watching over me and let the white horse be available with an empty giraffe right next to it. Makayla had been talking about wanting to ride the white horse since the hr wait for the train. I could NOT believe my luck. The attendant was awesome and even helped lift Makay on and buckle her so I could help Brendan. We walked around for a while to look at animals and then had to head back to the van which had to be over a mile away and Makay sat on his lap the entire trip. We had to race home to meet with a contractor at 4pm and made it just a few minutes late! I am so proud of my kids and proud of myself that I can handle two extremely chaotic days. It was exhausting but now I know I can handle anything this summer! I am excited. It was so much better than staying at the house all day.

We are adding on! Yup we are making this house perfect for Brendan. It is a great house and we had him in mind when we bought it. It was one of the only houses with a bedroom on the first floor with a large bathroom and a really open floorplan. The doorways are all wide so he can move around the entire first floor with ease. He needed a larger walker not long after we moved in and instantly could not fit through the bathroom door any longer. BUMMER. So we are changing his bedroom into a handicap accessible bathroom and adding on a bedroom and therapy room. I am pysched. It is overwhelming but it is something to keep my mind occupied and I know it will benefit him for the next who knows how many years!!! Why not just add more to my own plate!

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!

Tuesday, May 31, 2011

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!

Friday, May 27, 2011

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.

Monday, May 23, 2011

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!!

Friday, May 20, 2011

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?????

Wednesday, May 18, 2011

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!

Friday, May 13, 2011

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!!

Wednesday, May 11, 2011

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!

Monday, May 9, 2011

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!!

Monday, May 2, 2011

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!! :)

Tuesday, April 26, 2011

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!

Sunday, April 17, 2011

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.

Tuesday, April 5, 2011

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!