Life as a Mom to a child with Cerebral Palsy

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

2011-12-06T15:19:00.000-08:00

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!!

Happy Birthday Brendan!! Missing my Dad

2011-11-29T15:27:00.000-08:00

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.

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

2011-11-23T05:33:00.001-08:00

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.

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

2011-11-17T14:57:00.000-08:00

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.

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

2011-11-11T14:01:00.000-08:00

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.

Birthday Boy! Deals of the week!

2011-11-06T16:49:00.000-08:00

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.

Deal of the week! Happy Halloween and Special Olympics!

2011-11-02T16:07:00.000-07:00

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!

Equipment is being ordered!!!

2011-10-28T07:24:00.001-07:00

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!

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

2011-10-21T04:50:00.000-07:00

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!

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

2011-10-19T04:48:00.000-07:00

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!

Coupons Coupons Coupons!

2011-10-13T10:08:00.000-07:00

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. :)

Life has been crazy!

2011-10-12T07:38:00.000-07:00

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.

It has been a while

2011-09-27T04:09:00.000-07:00

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 will...no 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.

My baby is turning 4! Special Olympics!

2011-09-12T08:56:00.001-07:00

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.

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

2011-09-01T09:29:00.001-07:00

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!

School starts in 3 Days!

2011-08-29T05:18:00.000-07:00

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!

Out and About

2011-08-19T13:54:00.001-07:00

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.

It has been a while! AND an Exciting Purchase!

2011-08-15T04:09:00.000-07:00

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.

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

2011-07-26T05:34:00.000-07:00

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!

Life of a SAHM

2011-07-21T04:16:00.000-07:00

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???...now that is the question. I have no idea! I am happy to be a stay at home mom.

Enjoying the Summer~

2011-07-13T04:42:00.000-07:00

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.

How MY life is different

2011-07-11T04:44:00.000-07:00

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! :)

Mohawks and Legos

2011-07-06T04:38:00.001-07:00

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!

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

2011-07-02T13:54:00.000-07:00

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!

Last Day of School! Summer Reading & Wike

2011-06-27T11:36:00.000-07:00

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.

Just updating on Percs and Going Camping!

2011-06-23T17:21:00.000-07:00

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.

3 more days of school~Oh My!!

2011-06-22T06:46:00.000-07:00

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!

My son is spoiled but I want him to enjoy life

2011-06-17T10:41:00.000-07:00

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

I do many things for extra cash...you can too!

2011-06-15T06:05:00.000-07:00

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:

http://www.swagbucks.com/refer/sviv3

https://www.mypoints.com/emp/u/refSignup.do?refCode=PgDh-y1YqKTkC---I&arr=s2&afsrc=1&src=PG_FB_WALL&src=EXTERNAL_PUBLICATION&ref=nf

Top 20 Reasons Moms of Kids with Special Needs Rock!

2011-06-15T05:31:00.000-07:00

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: http://www.lovethatmax.com/2011_05_01_archive.html#uds-search-results. Type in Top 20 reasons in the search box

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

2011-06-14T07:50:00.000-07:00

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.

Another miraculous thing after PERCS

2011-06-13T17:01:00.000-07:00

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.

Couponing and More AMAZING PERCS Results!

2011-06-01T17:00:00.000-07:00

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!

Parade, Drive-in and more!

2011-05-31T03:45:00.000-07:00

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!

Brendan got his new AFO's!

2011-05-27T05:25:00.001-07:00

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.

I love this new feature on the Toyota Sienna...see video

2011-05-23T06:37:00.000-07:00

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!!

I learned something yesterday!

2011-05-20T06:51:00.000-07:00

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?????

PERCS, Weather, and Family

2011-05-18T07:14:00.000-07:00

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!

Ride Brendan Ride

2011-05-13T18:56:00.000-07:00

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!!

Bike Pedaling, Pa, and School!!!!

2011-05-11T15:16:00.000-07:00

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!!!

2011-05-11T12:19:00.000-07:00

I can't believe I forgot to post about something VERY important!! The day before PERCS Brendan had his second check on his heart device. He had an atrial septal defect and had a 20mm umbrella device placed into his heart via heart cath last July. The first post op appointment was a bit disturbing because the Dr. said he saw a few leaks on the ultrasound. With everything else going on in my life I refused to let it bother me and I put it out of my head.

Well the second ultrasound showed ZERO leaks!! The device is almost fully covered by skin and looks great! I am so relieved. One thing I do not have to worry about anymore. His heart is doing great. His grandfather and great grandfather both have (had) bad hearts so this is a very good thing to hear!

I did it! Look to your right :)

2011-05-09T16:41:00.001-07:00

Okay I got a video posted. I am not that high tech but somehow I figured it out. I posted a short video clip of Brendan taking really nice steps. He is following through with his right leg which is great for him. This is his 3rd lap around the house so he was starting to get tired as well and I think he still looks great. He is standing tall, legs are straight, and he is bending his knee as he steps. I will have to try and get the pre surgery video up but that will be another day!

I am struggling with some awful family news I received recently but I am trying to just deal with it the best that I can. I am an emotional person and I don't handle illness well. Hard to believe I raise a disabled child!! I have a huge heart but sometimes it impairs me. I just get so emotional that it effects my entire day. I can't get into it publicly due to their wishes but just keep my family in your thoughts and prayers. We need them!! :'(

Brendan is doing great and I am so proud of him. Casts come off in about 8 days...woohoo! He has almost taken all of the stuffing out from around the edges of the cast so his legs aren't looking so pretty! He is doing great with his letters. ADHD medication is working. Either that or his school totally rocks! He has struggled with letter recognition for years due to his vision issues. However, he has now gotten c,m,s,t, and a down pat!!! He can spell his name and recognize all of those letters as well but for some reason he really struggles naming the letters. We are heading in the right direction. I am so proud of him. He is also learning site words....the, my, I, and A. He has trouble with the but otherwise doing awesome!!

13 days since surgery

2011-05-02T06:59:00.000-07:00

Brendan is starting to walk more and more. It is difficult right now since he has big walking boots on with casted feet but he wants to do it. He walked all around the yard yesterday while I worked outside. He can sit on the grass and NOT tip over. He looks very comfortable. I find him in his bed sitting up all the time watching t.v. before bed. He looks like a different kid. It is very odd to walk in and see him sitting there so comfortably. I love seeing it.

School isn't having him walk yet. I really do not understand why but what can I do. I asked them to but they think it is better for him not to walk. Whatever. I am not fighting that battle. I am a little upset that they still haven't gotten a stander that he fits into because he should be standing everyday but other than that I love his school.

He is speaking more clearly and longer, more complete sentences every week. He even sounded like a typical little kid today and used 'like' in his sentence. I can't remember what he said but it was something like: mom that's like really cool. He is too funny. He is getting better with the computer thanks to youtube. He can click on his own videos, enlarge them, and press escape to go back to the small screen. I do not always have to help him like I was just a few weeks ago. I think his ADHD medicine is really helping him calm down and focus on things.

Not too much else going on here. I am ready for those casts to come off because bath time takes two people and he is heavy!!! :)

OH and his bruising is much better...almost gone!! :)

Already one week since PERCS!

2011-04-26T16:56:00.000-07:00

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

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

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

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

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

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

PERCS on Tuesday!!

2011-04-17T17:06:00.001-07:00

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

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

Oh The Compulsive Behavior!!!

2011-04-05T07:54:00.000-07:00

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

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

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

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

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

IEP success!!

2011-03-29T15:42:00.000-07:00

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

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

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

2011-03-25T06:49:00.000-07:00

I just had to say that :)

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

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

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

26 days until surgery and counting.....

2011-03-21T11:31:00.000-07:00

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

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

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

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

So excited for music and HAPPY ANNIVERSARY TO US!!

2011-03-16T07:09:00.001-07:00

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

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

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

Anxiety is setting in

2011-03-14T08:39:00.000-07:00

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

10 things I love AND hate about CP!

2011-03-09T05:54:00.000-08:00

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

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

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

PERCS Procedure is scheduled! Toothless Mouth!

2011-02-24T05:57:00.000-08:00

I took the plunge and scheduled this procedure for him. I am hoping it will better his life, relieve some pain, and help him walk better. He is going in on April 19th. We will travel to NJ once again. The Dr. will release his hamstrings, heal cords, give him an alochol block to help his hips and release his right arm. He said he will also get rid of his cross reflexes and the he should NOT need left hip surgery if we do this. So much for school vacation for him poor guy. He is a trooper and always come out of these things with ease so I have faith that all will go fine.

He has lost so many teeth! He is without four teeth right now and has a pretty goofy smile. He loves the tooth fairy coming which is strange because this kid is scared of Santa coming to the house on Christmas. He gets very excited and loves getting money!! I tried taking pictures but he always closes his eyes when the flash goes off so I didn't get any decent pictures.

Not much else going on. They are off from school this week so we have just been relaxing, playing, and enjoying some relax time. He got to ride his power wheels yesterday on the road so he was very excited about that. My husband hooked up a wagon on the back so all three kids got a ride.

New School Visit!

2011-01-25T11:58:00.000-08:00

Well I was impressed!! This school is amazing especially for a public school. I knew we lived in a great town but I never expected the school to look the way it did and have everything a disabled child would need. I had my hopes up and they were surpassed. The school was completely renovated and reconstructed. They have seperate OT and speech classrooms along with a large sensory and PT room. He will only be in the all inclusive for around 3 hours a day. He will be with typical 1st grades for science, social studies and everything such as music, art, gym... I am very excited for him to start in this school. His new teacher is young and energetic. They have computers in the room and one is a touch screen. Brendan already tried that out as soon as he saw it. The have a handicap accessible bathroom off their classroom and access to the playground. It is designed very well and I am excited for him to be with typical peers more because that is what he needs. He went to visit the typical 1st grade classroom and everyone stared since he wheeled himself in but they all said hello and smiled. One boy said "that's a wheelchair" and a few children walked up to him and talked to him. I think he will fit in just fine! He was shy but soon he will show them his personality and everyone will love him as everyone always does.

Big Boy Underwear and a New School!

2011-01-24T07:49:00.000-08:00

Yes Brendan is 8 but he wets the bed constantly. That is until recently. He has worn pullups to bed for years. I realized I couldn't remember the last time he had an accident and let him wear his underwear to bed last night. He woke up dry! He was very proud of himself. Lately he keeps asking me why he needs to wear a diaper as I put his pullup on. I explain it isn't a diaper and when he can stay dry he can just wear underwear. I am very proud of my boy. I am excited for him to be growing up and becoming more and more independant everyday. He is so smart and has a drive to be like everyone else. GO BRENDAN!

Random: Brendan's speech is really coming along. He is creating very complex sentences and thoughts lately which is different for him. The other morning he said to me: "Mommy my belly is telling me it wants to eat" It is hard to believe that my child who could only say a few words 4 years ago can say something like that! I never really knew if or how he would be able to communicate but I have no worries anymore!

Brendan is switching school systems. Since we just moved and I am quitting my job to be with him after school he is switching mid year. I was hesitant at first but honestly he isn't getting the best of anything where he is going now so I think in the end it will all work out. The special Ed team seems very nice. They are personable and call you back and are easy to talk to. He will be in a classroom with 8 kids instead of the 4 he is with now whom of which are ALL non verbal! That is a whole other blog :). I am excited for him to be around children that will motivate him. He loves being the only verbal one because no one denies him line leader every single day but we all know he needs to be pushed. He can be very lazy if you let him so he needs to want to be like the other kids. No offense to the non verbal children out there. I love the boys in his class. Brendan loves them but he also needs to be with children who are communicating with him. He thrives on his sisters and I know he will thrive with a more interactive classroom.

We are starting a very new chapter in our lives and it is exciting. I think the whole family will benefit from all of our changes and we are going to be happier and closer. Life can be good.

New house, New procedure, New Hopes!

2011-01-11T12:06:00.000-08:00

We moved into a new house a few days after Brendan's 8th Birthday. He LOVES it. We ended up buying a two level house but the 1st floor is completely accessible for him. He has a bedroom and bathroom on the first floor and can wheel his wheelchair all around without much trouble. He is in heaven. I never knew this boy would love his wheelchair so much and feel so much more independant. At first it was really strange when I would turn around and he would be right behind me or when I would be sitting on the couch and I would see his little head coming around the stairway. I have never seen him so happy, so proud, and so mature. We are planning on staying here for a very long time. We have built two ramps for him on the outside of the house which will give him even more freedom and save our backs! We love our new house. It is cozy and just feels like home.

I don't think I ever stop thinking or researching for my boy. His father sent me a video about this little girl who had a procedure done called PERCS. I thought about it, forgot about it, asked his neuro if she had heard about it and kind of put it in the back of my mind until recently. I tend to put things off when I don't want to deal with them. I did have some excuses to wait since he had hip and heart surgery this year but the time has come. PERCS recently popped back into my head and I realized I just needed to call and schedule an apt. That is how I roll. I have to just do it and I did. So we headed off to NJ to see Dr. Nuzzo this past Sunday. We took the whole gang and made a night out of it. We took the kids swimming in the hotel pool and then all went to see this new specialist yesterday.

During our trip I was able to meet my friend Karen and her son who also has CP. We have emailed and text for many years. It was really nice to finally meet each other. Our boys have a lot of similarities and are both super cute!

The Dr. apt went well. Some fears were confirmed such as his left hip is going out of place. I have feared this since the right hip osteotomy. That is one surgery you do NOT want to have to go through again. I knew the Dr. was going to tell me that because I looked at his xrays. I tried to pretend I didn't see it but I did. I am familiar with a hip that is out of place since I saw his right hip for years before we went ahead with surgery. The good news is the Dr. believes if we do this procedure he won't need the hip surgery! It may be worth it just for that! :)

PERCS is a type of tendon lengthening. This Dr. performs it less evasively and can perform multiple lengthenings at one time such as hamstrings and heal cords. Dr. Nuzzo also explained that Brendan has cross reflexes. If you create a reflex on his left leg his right leg responds. He said this happens in the muscle NOT in the brain and it is fixable! He said Brendan should respond very well to this and should become more mobile. He will also give him a better range of motion along with the releases. The Dr. said his muscles make his legs do things his brain isn't intending which makes things like taking steps that much more difficult. He should walk better because he isn't constantly fighting odd urges that his muscles make him do.

I am obviously excited and nervous. It is never enjoyable knowing you are going to make your child go through pain. I can't even understand what he goes through since I have never needed surgery. The most I have ever had done was a stitched thumb and my wisdom teeth out. I just have to look torwards the future. I have to believe this will open his future even more. He will be in less pain and be able to sit easier and walk better. Why wouldn't I do this for him??

So we will schedule this within the next few months. I tend to go by the book with him and do everything his Dr.'s tell me but this time I am going with my gut and trusting a Dr. who isn't widely known and who can't get his work published. I am going out of the norm in hopes that my son will reap the benefits.

I think I am getting used to these very difficult decisions. I have learned so much over the years and become stronger than I think I have realized at times. My son is the strong one. He is the trooper who always comes out smiling and never asks "why me?" He deserves a medal for everything he has gone through but he just goes with the flow. He trusts his mama and he knows how much I love him!

Happy Birthday My Sweet Boy!

2010-12-02T08:41:00.000-08:00

Brendan turned 8 a few days ago. It is so hard to believe that he is 8. He has come so far over the years. When I think back to when he was a few months old and were realizing something was wrong I could never envision my son as he is today. He was basically blind, he never stopped crying, and he had a very hard time sucking on a bottle. Now he can see my face and recognize me, he is a happy child with so much to say and he can eat a pound of turkey if you let him!

He is very excited to be 8 and be a big boy. Apparently 8 is so much bigger than 7. He loved celebrating his Birthday. He gets the biggest grin on his face when you sing to him. He was able to see his cousin who came for a visit from the Army and I don't think that child could have smiled any larger when he saw him. It was the cutest thing I have ever seen. He received a power wheels jeep for his birthday. He wanted a go cart but we didn't think the neighbors were going to appreciate that so power wheels it was. Well Brendan calls it a go cart and absolutely loves it. He just drives around with this ginormous smile and that is what life is all about..happiness!

I had a dream last night Brendan got himself out of his walker and ran across the gym. I love and hate those dreams. I love them because I get to see my child walk or run but I hate when I wake up and realize that it didn't happen. Often times in these dreams I dream that I wake up and it was real so it is very confusing when I really do wake up. They always feel so real. I am very happy my boy can get around in a walker but I just want to see him stand up straight for once without him having to hold onto anything. I want to back up and just look at my boy and see how tall he is and what he looks like without all that equipment around him. Maybe one day.

For now I am happy for everything that he can do because it is impossible to predict and envision what your disabled child will be able to do and what they will overcome. Brendan has overcome a ton already and he is only 8. I am looking forward to see what the next 8 years will bring!

Casts off today, ADHD meds, and a Birthday is coming up!

2010-11-11T10:30:00.001-08:00

Well we made it again...another 3 weeks and 2 days in casts. He was a trooper. He hardly ever complained. It was almost like he wasn't even wearing them. He is happy about them coming off today!
Not too much to update. His speech is really coming along lately. He is talking in full, complete sentences and using new words daily. He is pronunciating many words correctly now. I can tell more and more people are understand more of what he says. His sister answered him in the car yesterday and I was surprised she knew what he had said. I guess she could be used to his speech as well but usually she is like WHAT BREN??.

His ADHD meds have been helping and I have been getting positive remarks from his teacher and therapists. He is actually working hard in school!! I think he is excited to be able to concentrate more and get the positive feedback.

Only 17 days until Brendan turns 8! It is very hard to believe he is going to be 8. I think I say that every year! :) He is very very excited about his birthday and he just says he wants presents so he is not very helpful with gift ideas. He is loving his geo trax train and pixar cars can ride the tracks too so I got him mater. He already has two others but it is one of the only toys he plays with. He wants to make his own cake this year. I will have to let him because he has been asking for months. I will make one as well but I have to let him try to make one all on his own. He will enjoy it!

Botox, CoCO Keys, Serial Casts, and a new Wheelchair!! OH MY

2010-10-22T09:10:00.002-07:00

Well the fun never stops in our house! Brendan had another round of botox treatments done last week. He was a trooper as always but was very nervous this time. He didn't want to be put to sleep and he was crying but the Dr. calmed him down and side tracked him with some bubble gum scented anesthesia..yum! I had to leave my boy under someone else's care as I often have to do and wait. I am very used to waiting at this point! It always takes longer than you would expect but they called and everything went great! He did not want to wake up BUT I think that was a good thing because I just sat next to him while he slept it off for the next 2 hours and he was NOT cranky when he woke up AND HE NEVER THREW UP!!! This is the first time in years I can remember him not throwing up after anesthesia. I think we were both happy about that!
The following weekend we took the kids to CoCo Key Water Resort for some fun! The kids had a great time but let me tell you that my 44lb boy is not light! We like him to be able to do the same as the other kids so we carried him up 4 flights of stairs along with inner tubes to go down the water slides. HE LOVED IT!!! He was so excited because he had to go down all on his own. Every single time he came out the bottom he would say " I did it all by myself". He was so proud of himself. He didn't fall out once and would just sit in his tube at the bottom and wait for someone to help him get out. It was a process but so worth it!! He loves doing things every other kid does!
Only 2 days later it was time for serial casts. He was nervous going in and wasn't thrilled about being casted but a pretty girl named April starte talking to him and that just turned his whole personality around and he was amazing through the entire casting process which takes over an hour. He also got fitted for his new wheelchair that day. I have never seen a child more happy about getting a wheelchair which sure does help my sprit. I never wanted to order another wheelchair for him but the day came where I knew we had to. :( He got to pick the color and blue it is! He is not too bad at wheeling it around considering his right arm and hand are much worse off. It is hard for him to go straight but if you just leave him in a room he is able to manuever all around and he always has a great big grin on his face! I love seeing him happy. He always has to go through so much in his life and he always handles it with ease. He makes everything easier on me just being him! Love ya buddy!!!! I will post pictures soon!

Brendan started a new school

2010-09-15T07:33:00.000-07:00

Well my son always amazes me and he has done so yet again. He transitioned perfectly. He was so excited to go to a new school and start first grade. He was all smiles as you can see from the picture. He did not cry, whine, or have any anxiety. His father and I brought him for his first day because the school was not exactly ready or prepared for these students just days before school started. That could be a whole other post!! He just wanted a hug and off he went with a new PT down the hall to use the restroom. I am so proud of him.

He had a fun but difficult summer. He had hip surgery and a heart procedure and yet he takes everything in stride and still exubes happiness and joy. He has made a friend already, Evan. He loves Evan. Evan is wheelchair bound and doesn't speak but Brendan took to him instantly. He wants to stand in his stander next to Evan, sit next to Evan and he is constantly watching out for him. Sometimes Evan's head falls down and Brendan yells to his teacher's "Fix Evans head!!". He is the sweetest little boy. I think he will make a good husband one day...watch out ladies!! :)

I wish we had a break from procedures but that never happens..Botox is on for the 5th of October, I am scheduling for him to see a new professional to assess his vision in Boston, and trying to figure out how to get him assessed for a rather new lasor treatment for tissue release. There is alway something to do and research and debate on doing but I will continue to do everything I can for my little boy. He deserves that and so much more.

Brendan's ASD is CLOSED!!! :)

2010-07-31T07:33:00.000-07:00

The days prior to this surgery were brutal. I was so nervous and really feared it not working. I was so prepared for them to tell me it did not work and he would need open heart surgery BUT that didn't happen. Boston Children's is an amazing hospital and everyone has great bedside manner. I am not really used to that. I received a phone call one hour into the heart cath and my heart dropped. The only downfall of this hospital is that your cell phone has NO reception. I was just finishing my lunch since I hadn't eaten all day along with my son so we rushed back upstairs to talk to someone. I thought to myself why would they be calling only one hour in??? It must not have worked. I was on the verge of tears. A few (very long) minutes later I got a call in the waiting room and the nurse just called to tell me everything was fine and Brendan was doing great and they were about to try and close his ASD. UM you call?? I don't think I have ever received a phone call with an update and definitely not one hour in. That was very nice even if I had a slight heart attack because of it. :)
Less than an hour later I received another phone call and yes my heart dropped again. It was too early for them to be finished... yet they were! The nurse just said they were all done and the Dr. was coming out to talk to me. My brain instantly went to "OMG it didn't work" so I forced myself to ask the question "was she able to close it?" and I heard those lovely words "YES, it's closed". It is hard to explain that immediate feeling of relief. At first I was a bit shocked. When I first said those words to my husband, who was staring at me trying to listen to my phone call and wondering the same thing, it sunk in. It worked!! We both got teary eyed. Open heart has been on my mind for years and there have been many nights of tears from fear. He has been supportive every single time and now I don't have to shed tears anymore about this. I can move on emotionally. My son doesn't have to endure something so strenuous on his body. I feel so relieved and like a huge weight has been lifted. I really felt lighter that night.
We were told we could see him in about 30 minutes but an hour went by before they called us. His father and I went in first. Brendan had two of his grandmothers, one grandfather, his dad, stepdad and of course myself waiting to see him. As we were walking in we were told they had some trouble with bleeding and had to hold pressure for a while to stop it (which created some nasty bruising on my lil boy) and they had to sedate him to control it. His spasticity causes his knees to bend and his legs to scrunch up which wasn't helping the situation. So he slept medicated for the next 3 hours. We all took turns just sitting with him and letting him sleep. He had to lay still for 7 hours so sleeping for 3 of those was fine with me.
He actually woke up peaceful. He usually wakes up very cranky after any surgery or procedure but not this time which was great since he had to just lay flat and still until 9pm. Everyone left around 6pm and we had a quick visit from my sister around 7 which helped break up the time. He vomited his first popsicle which I knew was coming. It always happens no matter what so this little boy who hadn't been able to eat for 24 hours now had to wait for his belly to wake up. He finally got another popsicle and when that stayed down so he mowed down two packages of oyster crackers, a package of cheez its, gingerale, some apple juice, and finally some chicken parm.

We got to leave the room for some x-rays and then just sat together and talked. We video skyped my husband. We tried playing legos but that didn't work with his IV in his good hand and the whole laying down thing. He really perked up after he ate and was much more himself. He was cute and funny and the nurses all loved him. I was exhausted so we both went to bed at 10:30pm after he had a full belly.

I expected a long night of him talking to me and asking questions but I told him we had to go to sleep and he just did! He is amazing! We both woke up alot during the night due to the nurses coming in but I stayed out of it and just listened and he just talked to the nurse and went back to sleep. (still in shock about this!) He asked them questions and handled this whole thing like such a big boy. He really amazed me this time. He is so brave.

We were able to leave the hospital at 10 the next morning after the x rays and echo showed that the device stayed in place!!!! He walked all the way from his room to the van in the parking garage which was one long walk for him in his walker. It must have felt good! He had been asking for McDonalds since the day before so that is what he got and he ate everything. We went home and relaxed and played legos.
We had a great week together and just kept it low key. He did end up having a 102 fever for 24 hours but it hovered around 99-100 other than that so we just hoped for the best and yesterday he was fever free. He has to go see his cardiologist here in RI next week and in 3 months and we just have to hope that the device stays in place and everything goes as planned. He should start gaining some weight now that his heart doesn't have to work so hard!!
It is over and it worked and I am so thankful. The prayers worked and my son is truley amazing and he reminds me of this all the time!!

It is almost time. Surgery #6

2010-07-22T12:28:00.000-07:00

I can't believe the appointment is so close. It has been a difficult week for me, emotionally. My worst fear is that this heart procedure will not work and I will be told my 7 year old boy needs open heart surgery. This weighs heavily on my mind and I will not know the answer until Tuesday morning. I hope for ONCE this boy's luck goes his way and this actually works!! I know there are still risks. I finally read about it. I couldn't make myself research it until this week. Normally that is all I do is research research research but to keep my sanity I did not do that. I read two articles and that is all. I just have to remember my son comes though everything with flying colors and no complications and I must believe in my own heart that this time will be the same.

I haven't really told Brendan yet. I don't feel he needs the stress. I can see him listening when I talk about it to other adults but I don't really think he knows what is going on. He hasn't asked any questions yet so I will leave it be. I will let him enjoy this weekend of camping and explain Monday while we are completing 6 hours of testing. He is unaware of all of this. He has no idea mommy took off the whole week to be with him and we will being staying overnight in the hosspital IF it works!! So whoever reads my blog think of my son on Tuesday morning and if you pray...pray with all you have that this procedure works for him and they are able to close his holes and this ordeal can be behind all of us! If you want to read about this procedure here it is:
Procedures using catheters

A procedure that uses a catheter to close the ASD with a special closure device (septal occluder) is a recent but increasingly used option. Catheters are thin, flexible tubes used in cardiac catheterization.

The advantages of such procedures are that they:
Don't require the child's chest to be opened
Usually require no more than an overnight stay in hospital
Let the child recover quickly
Closure with a catheter can't be done for every type of ASD. A catheter can be used with secundum defects (that is, those located near the middle of the septum). It can't be used with defects so large that there is not enough surrounding tissue to anchor the device.

The catheter procedure is done under general anesthesia, so your child will sleep through the procedure and not feel any discomfort. During the procedure, the doctor:
Inserts a catheter into a blood vessel in the groin
Threads the catheter to the heart
Measures pressure and oxygen levels for all four heart chambers
Injects dye and takes pictures (angiogram) of the heart
Uses a balloon catheter (under ultrasound guidance) to estimate the size of the ASD
Threads a special fabric-covered wire frame to the heart
Positions half of the device on the left side of the atrial septum
Positions the other half of the device on the right side of the atrial septum
Wedges ASD between the two parts of the device
Within 6 to 8 weeks, normal tissue grows in and over the device. There is no need to replace the closure device as the child grows.

The outlook for children having this procedure is excellent. Closures are successful in more than 9 out of 10 patients, with no significant leakage. Because the device is relatively new, what is not known is whether there are any long-term problems with the device compared to surgery.

(while googling a link a youtube video popped up for an ASD closure. I think I am all set watching that one!!! Sometimes there is a bit too much information out there for my eyes to see.)

Ok Happy Post :)

2010-06-28T07:08:00.000-07:00

My husband and I bought bike trailers so we can start excercising. It is difficult to have time for yourself with 3 kids. We are always together as a family when not working so this idea was perfect!! Derek pulls the girls and I pull Brendan. I am so proud of myself because I wasn't sure I could pull my 45 lb. boy up hills but I did it. I never walked, not even once. We rode 2 1/2 miles to my sister in laws and then took the kids swimming for a few hours and then rode back home. It was such a great day. The kids had so much fun and we got some exercise.

Brendan LOVES any kind of movement since he is so limited in life. He loves go carts, bumper cars, roller coasters...you name it. He is already asking when the next bike ride will be. He was cracking up when we rode down a big hill. He was yelling out "go faster, car mommy, and take a right!". He was so funny. I love seeing him smile. I love seeing him enjoy life and I love figuring out things we can still do as a family while having a disabled child. Life is good.

Heart Surgery is booked!

2010-06-28T07:06:00.000-07:00

I will talk about it in detail at another time. It is difficult for me to write and I tear up very easily regarding this surgery. I have been dreading this for 7 years and the time has come to close his holes. He has an ASD but actually has 3 holes all in a row. We are hoping to close it in a heart cath lab with the umbrella procedure BUT they Dr.'s are not 100% sure and we will not even know until that very day. So keep us in your thoughts. He is scheduled for July 27th. :( My heart breaks for everything my boy has to endure but he is the toughest kid I have ever seen! Nothing phases him and he always keeps me strong! I love him. That is all I have for now because the tears are already welling up.

Another Surgery

2010-04-29T12:40:00.000-07:00

Well Brendan was a trooper yet again. He had surgery last week. He had major hip surgery in December 2007 and they had to remove the hardware. They had to make his original incision longer because he has grown so much BUT it looks great. They removed some excess skin that made the scar very prominent so I think once it heals it will look a little better. Not that it really matters. He can tell people all about his battle scars one day! I bet he could impress a lady one day :). He really understood what was going on this time. He was not happy about going in for surgery. As the nurse was lifting him onto the surgical table he yelled "I don't want surgery!" I was so sad for him. It was the first time I have ever seen him go under and this was #6. I have always had his dad take him. I have dreaded, feared, refused to do it! Well his dad was running late this time and guess who had to get in those gorgeous scrubs they supply. That would be me in a one piece suit that could have fit 4 of me! I was so nervous but had to be strong for my boy. He fought the anesthesia. he didn't want the mask near him. A very smart Dr. suggested bubblegum flavor to help him succumb to the drug and his ears popped right up. Once he got one wiff he calmed down (after trying to lick the mask) and was snoring before his eyes were closed all the way.
I think this was the shortest surgery yet!! The Dr. was greeting us in less than 2 hours! Everything went great and he could go home if he was doing well. That was around 9:15am and we were driving home by Noon!! He was awake and happy after vomitting all over himself once we started driving. We just have to accept that Brendan will vomit after anesthesia whether he has anti nausea or not!! I was just talking to my husband how he was doing good when I see my child touch his throat and say "mom I'm gonna throw up". Well thank goodness his dad had handed me a vomit bin (although extremely small in size) before we left because Brendan almost caught it all! I was impressed. The last time this happened he was holding the vomit bin up and to the left of his head and not a drop made it in. This time most went in! So we pulled over dumped it out and continued on our way while Brendan asked for lunch!
He was chipper and happy and talkative. My mom came to visit and he was so happy. He was talking her ear off and told her she was bringing him out for ice cream and I was staying home. Little did he know I was coming so I could lift him! :) So after a nap on the couch with mom (we had been up since 4am) and some dinner we went out for ice cream. He was tired by this point and didn't eat much but he was happy to be there.
He has been doing geat since. A few days of pain and "mommy don't hurt my booboo" and he was back to his old self. He even seems happier. I am starting to wonder if that hip did bother him. I guess only time will tell but for now I am enjoying my boy. He can not walk or even stand for another 3 weeks and I feel awful he just has to sit on his butt for a month but I guess that is the price you have to pay so his hip can heal and become strong again.
I am anxious to see if his walking improves and if he winces less. I am hoping he gains something out of this one. So 6 down and how many to go? We may never know. I do know I was the least stressed out about this surgery and I have learned to control my anxiety. Maybe I am just saving all of for his heart surgery that is coming up. Two days after his surgery Boston called to schedule his sedated heart cath. I basically said I will have to call you back...my son just had surgery! I am still not ready for that even though I have known it was in his future since he was less than a year old!

Botox...Again!

2010-03-03T09:59:00.000-08:00

Brendan had botox injections yesterday. I think this is the 7th time but honostly I have lost count. We used to go to Boston for Botox but recently have became involved with an amazing neurologist here in RI. She is one of the only Dr.'s in our state who administers the botox and she has been extremely helpful over the past year. Brendan was very nervous days prior to his injections. This was the very first time he was anxious about going to the hospital. He is getting older and understands everything. He also listens to EVERYTHING anyone is saying and sometimes I am not mindful of that. He does well once you explain everything to him. I think he was nervous because just 6 months ago he went to the hospital for botox injections, double eye surgery, and an echocardiogram. I am sure he remembers that day!

He is put under anesthesia for the procedure which always has me on pins and needles until he is awake. I think that was his 11th time being under and it NEVER gets any easier. I really need to remember he vomits after anesthesia and not while he is in the hospital....oh no....it has to be on the drive home! Yes he had juice and banana all over himself, his booster seat, and my van. Oh Brendan. He tried to get it into this miniscule bin they gave him to hold. I am pretty sure not even a drop made it in. But what can you do. My husband cleaned the car while I cleaned Brendan, his booster, and winter jacket. :)

He was out of it for a few hours and all he wanted to do was eat! He snapped out of it after a popsicle and then ate all of his soup. He was back to himself 3 hours after he woke up so that was nice. He is very loose which is always strange. I can swing him around my hip with ease to carry him around. He also had some injections in his right arm and pecs which makes getting a shirt on and off a breeze! Too bad they didn't stay like that forever but I'll take it. We can work on range of motion and building muscle mass and more control over the next few months. He seems to always improve!

Thankfully for us Botox works for Brendan. We just don't know how much longer it will. He is a troooper as he always is and he keeps on going day by day wihout ever asking WHY? He just doesn't know yet that not every child goes through what he goes through and I will keep it that way for as long as I can.

I always wonder how much more I can endure. I will never know that answer I assume. He needs hip surgery to remove some screws in the very near future and then he will need a sedated heart cath which will reveal what needs to be done to close those stubborn holes in his heart. I may know how much I can handle if they tell me my boy will require open heart surgery. I may need a therapist at that point! But for now I will keep my head high and try and keep those tears away because we made it through another stressful day.

SDR update

2010-01-25T09:16:00.000-08:00

Well after a few new Dr. appointments we have been told that SDR is not for Brendan. A specialist in MA feels that once we take away all of Brendan's tone he will actually regress and not progress. Some children with CP rely on their tone to be mobile. Brendan happens to be one of those children which is very unfortunate. I guess it is somewhat bittersweet because SDR is not something I wanted to put my child through and wasn't even sure if I was mentally strong enough to actually go through with it but in the end it seemed like it would make Brendan's future easier and less painful.

We still haven't given up completely. We can still fly to St. Louis and listen to what Dr. Park has to say regarding the surgery. We are also going to try a baclofen pump trial to see how Brendan's body would really act without having any tone. The procedure is a spinal tap and risks are involved but at least we will have a better sense at what SDR would do to his body.

Unfortunately we have to wait a while before trying the pump trial. Brendan only weighs 39 lbs which is on the small side. He also has 2 surgeries coming up. He needs to have screws removed from his hip that have been in since his right hip osteotomy in December 2007. He risks infection since they have to take them out of his bone. He also needs to have the 3 holes in his heart closed. He will be having a sedated heart cath in July which will determine if my little boy needs open heart surgery or if his tissue can handle a MUCH less evasive and simpler procedure to close the holes. Obviously his little body can only handle so much in a year so we have to make those two surgeries priority. He tends to lose weight after surgery as well so he will be even smaller. He dropped to 27lbs after his hip surgery.

So many decisions all the time for my little man. I haven't even gotten to his cortical visual impairment update but that will have to be another day.

I will try and post new pictures soon. He is getting tall and very hard for me to lift as I am only 5'1"!! I am fortunate that he doesn't weigh very much yet!! :)

January 2010

2010-01-25T08:56:00.000-08:00

WOW it is 2010. It looks strange, it sounds strange. I can't believe how fast time is going by. Brendan is 7 years old. He is constantly telling me "mommy I'm so big, I'm not little anymore, right?" He loves getting big. He has been doing very well lately. He is always progressing in his speech. He is talking in fairly clear sentences. He is correcting his own words that sound a bit off. He can say the sound F for the first time this past week. It is very exciting. He still needs a reminder but if you ask him to say a word that starts with f...he can!!! It brings tears to my eyes. He has come so far. At the age of 2 he said one word, bye. That is because he loved when therapists and doctors were done and he would shout BYE!!! I am pretty sure (my memory is fading) that he didn't say much more until the age of 4. He could say a few words here and there but not much so to think at age 7 he would be speaking (fairly clear) full sentences is truley amazing. I am thankful he is always progressing in all areas.

He is getting stronger and stronger as the years go by and he loves it! He now asks to put the forks on the table for dinner so I hand him 5 forks and while in his walker, he holds onto those 5 forks and walks to the table and puts a fork at each place. As I see him struggle to walk around each chair and get that fork onto the table he has the biggest smile plastered on his face. You can tell he is so proud of himself. He likes to 'help' make dinner and lunches. Now his helping is constantly wheeling over my toes in that walker or eating everything we take out for lunches but he loves it and it makes him feel big. He can now open the dishwasher and fridge doors in his walker without falling onto the floor. He can flip on and off light switches without struggling. This only too a few weeks to master. I don't even get nervous he will crash to the floor anymore. He is getting confident and strong and I love it!!!

I just can't believe he is 7. That just sounds so old. I think of the past 7 years and how difficult some days have been, how much he has been through, how much he has endured, and of course how much he has progressed. He is always such a trooper. He is a fighter and he gets through every procedure and surgery without much setback. He is the type of child who flirts with all the nurses in his scrubs and is smiling and walking around in his walker thinking he owns the place until he is put under. He is amazing!!

SDR Selective Dorsal Rhizotomy and my suddenly dare devil son!!

2009-11-16T08:48:00.000-08:00

Well it is time to focus on our decision again for Brendan having SDR. The results are amazing. I need to figure out how to post some video clips of children who have had SDR. The surgery seems like a miracle. I realize it will take years and a ton of therapy to see the results we are hoping for but the results that can be obtained are almost unimagineable. I keep having dreams of Brendan standing up and walking on his own. I love those dreams. I have never seen my child stand up tall. I don't even know what he would look like without being hunched over with his knees bent. I hope one day I can see this vision with my own eyes! I have never been able to get a true height on him because the Dr.'s don't lay him down and measure him like an infant anymore. We just guess. I know he is getting very tall because at my wopping 5'1" frame he is getting very difficult to carry. He stands right below my chest when I hold him up and that isn't even standing tall. They grow so fast!

He is becoming a very daring little boy lately. He actually fell off the couch and out of his walker twice this weekend. I think his vision has improved since his strabismus surgery this past August. He has found the light switches in our house and he seems to be much more aware of his surroundings all of the sudden, in turn creating my dare devil son.

He has never been able to lift one arm off his walker and now he is doing this and turning on and off a light switch. AMAZING! He is also enjoying opening and closing the dishwasher. Well this is how he fell out of his walker not once but twice! The first time I cought him but I wasn't fast enough the second time. He has no balance and once his mind has any sort of emotion his arms tighten up especially at the elbow. He has absolutely no reflexes so his arms never protect him against a fall which often means his head is what hits first. :( Luckily his back hit the wheel on his walker first and then his head lightly bumped the ground as he slipped out of my arms. BUT I am happy that he is getting out of his comfort zone and actually trying to do these things. I am also happy that he has gained some muscle mass to be able to do this things. Holding himself up in that walker with one arm is a massive feat!! I am so proud of him but I envision many more bumps and bruises down the road. He is a mad man in his walker. He has no fear. He will yank it over bumps and curbs and anything in his way without realizing that it may tip over with him in it. This has also happened and is not a pleasant site to see! BUT he is a boy and that is what boys do and how happy do you think it makes me to be able to say something like that!

One Dollar at a time

2009-11-16T08:30:00.000-08:00

You may have noticed that I have added a donate button to Brendan's blog. We are asking those who are interested in helping Brendan walk donate a dollar. These dollars are only going towards Brendan's future surgery which requires money for plane tickets out to St. Louis, surgery costs, future therapy costs, and any future equipment needed for him to ambulate. I have set up a paypal account in his name and he has his own email. Helpbrendanwalk@gmail.com
Having disabled child requires money you would never imagine spending. His father and I have spent $1,000's just on new walkers for him. He needs special sneakers to fit over his leg braces that cost $65 each which he now wears a hole through in his toes just in a few months. We are lucky to have great insurance that covers most other expenses but these added expenses add up very quickly.
So on top of these we need to get Brendan to St. Louis!!! He needs to get evaluated by Dr. Park one last time and I need to be by his side taking diligent notes. Today's plane tickets cost $828 round trip for just Brendan and I to fly to St. Louis. We also need a place to stay for one night and probably a rental car. So as you can see those expenses are unaffordable for us right now. Obviously I will go into debt if need be for my son's future but a little help would be greatly appreciated.
We will need to fly to St. Louis at least 3 times over the next couple of years.
This is why I am asking for a little help. Something I NEVER do. I want to be able to make this surgery a possibility for Brendan. He deserves it.
Thank you in advance to anyone who decides to donate their dollar!!! :)

Having a Sad day today

2009-10-30T12:56:00.001-07:00

Today we had a meeting with all of Brendan's therapists and special ed teacher. Unfortunately my fears have been confirmed. Brendan is not learning as he should and his brain is the problem. I knew it all along and I realized we would struggle but I am not sure I realized we would already struggle in Kindergarten. He is having a very hard time recognizing letters and numbers. Forget about writing, we are far from the feat. His teacher said Brendan is her most challenging student yet. This sadden's me. I guess in the back of my mind I just assumed he had a lack of attention span or wasn't motivated but everyone is saying the same thing...it is his brain. If it is his brain there is nothing we can do but try our best and hope he can learn.
Will he ever write? We don't know. Will he ever read? We don't know. I won't give up on him, never in a million years. It is just hard to realize that the next 12 years are going to be a struggle for everyone, maybe even harder than I thought.
They might be wrong. Maybe he will prove us all wrong. I know there are computers he can use and he doesn't HAVE to write but reading??? I hope he is able to learn to read.
It is hard to see his stepsister who is two years younger spelling and sounding out words and writing all her letters as we speak them to her. He can't even draw a circle. Well he is getting better at the circle and he almost made one the other day which I was very proud of!!
I just had to vent today because I feel sad and am very teary-eyed. He is my boy who I want everything for and I am not able to give him everything. It hurts to see him struggle especially when there is nothing I can do but love him and accept him. Most parents can look into their child's future but with Brendan you have to take it all day by day. I will never know and can not imagine what one year from now will be like. I just have no idea. I know I will be better by tomorrow, I don't often feel sad for long.
He has come such a long way and I know he will continue to do so. I just worry as all mothers do for my imperfect son is perfect to me!

Serial Casting

2009-10-05T10:27:00.000-07:00

We made it through with flying colors! Brendan spent 4 weeks with both legs serial casted. He had a new set of casts put on each week. He picked blue every single time. The last set he was convinced to have one be red...I heard it took lots of convincing!! :) He did fantastic. He is such a trooper as always. He never complained. He slept through the night and walked everywhere in his walker.
The last set was taken off today and I have never seen his ankles so loose. He stood up in his walker and his right foot was flat on the ground!!! It was a great sight to see. Off he went down the hallway and I could see his heels coming down towards the ground much farther! I am so happy we decided to do this.
We are also going to bring him for extra therapy for the next month. Just once a week but it is with the PT who did the serial casting. (and I am sure it will be better than the therapy he gets at public school!). I am really hoping he will benefit from this long term.
His right hand is also doing much better after some Botox injections. I am very happy I was adamant about using botox in that area. They always want to focus on his legs but he needs to be able to use his right hand as well! His is learning how to grip with it and he seems much more comfortable. Shirts are much easier to get on and off. I am very happy with the results. It is always nerve wracking at first because mobility is lost in a way. He uses his tone to do things and when the tone was gone so was the use of his hand. He couldn't hold a cup or even close his fingers BUT he is working on it and improving!
He is doing very well lately and I am so proud of him (as always). He is communicating more and more everyday. He is really thinking about what he is asking and what he wants to know. For instance; while riding Toby at hippotherapy he kept asking to go outside but it was pouring so he couldn't. The PT brought him over to the barn door to show him the rain and Brendan said to me "mommy after Toby can we go out there?". This is huge for Brendan. Those brain waves are working and continue to create new pathways. He may be globally delayed but he is getting there and I love it!

My little trooper

2009-08-20T12:37:00.000-07:00

Brendan had eye surgery to fix his strabismus in both eyes a week ago. He also had another round of botox injections. This was the shortest amount of time in between injections and I don't see the drastic improvement as I have before. His eyes look so strange now. It could be that the inner corners are still blood red and they cross now instead of drift outward. But that is all normal and his eyes should adjust and look great in a month. He was such a trooper going in for surgery. I explained that he was going to have surgery on his eyes and that he would be at the hospital and he asked "am I going to sleep there?" I said no you will come home a little while after. He said "no I want to sleep there" I asked why and it was because his Pa was sleeping at the hospital. Too cute. He was smiling and walking and chatting it up with all the nurses prior to surgery. 6 hours later I was loading him into his dad's car and he said "can I have a snack?" I was like yup he is fine!! :) He is just such an inspiration. Nothing gets him down. He is happy and funny and enjoys life with all of it's challenges.
We had the Dr. inject botox into his right pecs and other arm muscles this time. He has limited use of his right arm and hand. He uses it to assist his left arm but that is about it. Long sleeve shirts and coats are very difficult to put on and off so I am hoping we see results from this. He already seems to be less rigid and can raise his arm higher than ever before. No need for a long sleeve shirt yet but maybe I should just try it to see the difference :).
So my son just amazes me all the time. He is going to do just fine in life. I can see that already.

A difficult year so far...

2009-06-30T06:03:00.000-07:00

We have had a tough year. My father almost died after his heart valve transplant and my grandmother just passed away. She had lived with my parents for 2 1/2 years. It has been a very long 4 months since my father's surgery but he is improving slowly. He is just always exhausted, just from walking, and his heart will never fully function like it should. It is very sad to see and it was a very traumatic experience.

Sooo after that I couldn't put Brendan through SDR. I was fully prepared and ready to go through with it but then after almost losing my dad and watching him in a hospital bed for over a week before even waking up was very very hard on me. We didn't know if he was going to pull through and it just makes me think that anything can go wrong and what if Brendan doesn't wake up? I can't imagine anything happening to him so I just have to regain my strength for this difficult surgery. I need to be the one on board 100% and fully prepared for this to emotionally handle the surgery and the post care so the decision weighs on my daily.

On a lighter note Brendan is having a great year. He had botox in Feb and after being very weak for a month or so he has gained a lot of strength and looks great in his walker. He is walking longer distances and seems more confident in it. He turns all over the place and runs down hills in it. It is great to see. He loves being independant. He went swimming all by himself for the first time. We put arm floaties on him and in the pool he went with his stepsister. He floated around the pool 3 times and had a smile on his face the ENTIRE time. It was a great day and I am so glad my hubby talked me into it...I'm a little overprotective-haha. :) He is sleeping well with his braces and even has a new brace that he wears when he is with his father. It is made out of the AFO material and it goes from his hips to his ankles. He legs seem much straighter during the day after he wears it and he seems to be less rigid. So all in all I am happy with his progress this year. He is always smiling and joking these days and is talking up a storm. He can drive me nuts with all his questions but we can have conversations which I treasure. He seems to pick up more words and speak longer sentences by the day. He always makes me so proud!

The new braces he has to wear

2009-01-26T08:52:00.000-08:00

Brendan has been wearing one knee immobilizer every night. It hasn't been too bad I alternate the leg and give him a break once a week. He usually sleeps pretty good with it on, sometimes I have to take it off in the middle of the night. Some mornings he wakes up crying and tells me it hurts so I just take it off and stretch out his leg.

So NOW Brendan is supposed to wear TWO knee immobilizers AND a hip adductor while he sleeps. It is awful. The knee braces are these long black foam things that I have to velcro around each leg from right under his hip down to his ankle. The have supports inside that go down his leg on both sides of his knee to keep his leg straight while he sleeps. I hate putting them on especially when he points to his leg and says "break tonight?" and I have to say "nooo not tonight".

After I get both of them strapped on I have to put this triangleular type pillow between his legs which straps around each leg. :( It is awful. How can anyone sleep like that? Not to mention his legs are always bent (which is why he needs the braces on) so he probably has leg spasms all night. He can't always communicate everything so I really have no idea not to mention he has been in pain since birth so he is used to the pain.

He didn't make it long the first night so I took everything off accept for one brace. I felt so bad for him which doesn't always help! So the next night I put on two braces which he made it until around 10:30pm and then I took one off. It doesn't help when you come upstairs to check on your child and he is laying there awake so you ask him if he is okay and he says "my brace hurtin me". It kills me!

DH said I have to leave both on for an entire night or he won't ever get used to it! I cried of course because I know I have to and the pity thing won't help him in the end.

So now I need to keep both on for an entire night and then add the hip pillow.

Life can really suck for him sometimes and that is why SDR sounds better and better all the time!

Decision has been made

2009-01-23T06:55:00.000-08:00

We have decided to go ahead with the surgery. He does need to be a candidate but I really have no doubt that he will be since he was when he was 3. I am filling out all the necessary paperwork and sending a video of Brendan to Dr. Park out in St. Louis and then we go from there.
Brendan is having another round of Botox injections on Feb. 12th. They will be injected into his hamstrings and right below his knees. I am also going to ask for a small amount to be injected into his right arm because the last time he had that really helped him gain mobility in that arm which he has maintained! :)
He will most likely be casted (right hip to ankle) after this round of botox to help his right knee contracture. He has to wear knee immobilizers at night now (on both legs) because his knees are becoming very tight and stiff. He also has to wear a pillow (strapped to his legs) that goes in between his legs to keep them apart while he sleeps. I have no idea how he can sleep like that but the kid just does! He is amazing....
So I have a lot on my mind and this surgery is really weighing heavy. I just have to hope for the best and maybe one year from now I will be posting that Brendan has taken his first independant step at the age of 7. Now wouldn't that be the best blog ever?!?!

SDR

2009-01-06T12:46:00.000-08:00

So Brendan's father and I are trying to decide if SDR (Selective Dorsal Rhizotomy) is the right choice for Brendan. His father is all for it while I am nervous about it. It is not something you can take lightly. It is major surgery. Spinal surgery! I don't even know how I have gotten through all of Brendan's surgeries so far but I have so I know I can do it. :)

I need to for him. I know he will want to walk unassisted one day. I know he will want to look 'normal' and be like all the other boys. I know he won't want to rely on me every day (even if he loves it right now) so I need to do this for him. I know that but it doesn't make it any easier. I wish he could just say " Mom I want this" but he can't. Not yet anyway. How do you put your child through all that pain when they can't really understand why?

So that is my dilema right now. Life can be challenging that is for sure.