Apple picking day

Apple picking day

Tuesday, November 18, 2014

Surgery has been Scheduled! Candy Bars have arrived! 1st School Dance!

A few years ago I vowed for Brendan to go 2 years surgery free. Well I surpassed that goal and we have almost gone 4 years SURGERY FREE! Never in my mind did I think SDR would be the next surgery. I was content with not going this route. However, after PERCS (his last surgery) that all changed. I saw a different child. I saw a child that could do things he never could before. I then began to second guess all those opinions about what he would be like after SDR. After watching so many success stories who all had the same debbie downers telling them their child would never do all the things they are doing I changed my mind. AND we got the phone call today. SDR surgery has been scheduled for Brendan on February 20th! That is only 93 days away. I wanted the 13th so one week would be during his school vacation but they never called and already don't have availability. UHHHHHH! Oh well, I feel better about Friday the 20th over the 13th anyway. I guess we will still use some of vacation for travel time anyway so in the end it doesn't really matter.

The candy bars arrived!! We have decided to try and sell 624 candy bars to raise more money for his surgery expenses. Wish us LUCK! Brendan's school is helping to sell a bunch so that made it seem more worth it. I had no idea how I would sell over 500 candy bars. UPS only delivered 2 of 3 boxes though even when tracking said they delivered 3 so I am really annoyed and hoping they just forgot it on the truck or something. I can't lose 208 candy bars. I wouldn't make a dime!

Brendan and his sister both attend 5th grade and they have their first school dance this Friday. Pictures will definitely be shared. How cute is this? Brendan can't attend on his own unfortunately so his aide is going with him. I figured he may rather want her to tag along than his parents. I hope he has a good time. It seems like he has plenty of friends. I am a little nervous.

Saturday, November 15, 2014

Brendan's battle with the bathroom! & The Bright Side!

As Brendan is getting older he is having some more issues with using the Bathroom. He simply does not want to poop. He refuses, he holds it, he has accidents. It is beyond frustrating because he is almost 12 and has been toilet trained since age 4. This has been going on since last January and we are at our wits end. We have tried everything under the sun to get passed this ordeal. We have punished, we have ignored, we have rewarded. We have tried natural laxatives. I have questioned puberty causing it and come up with every excuse in the book. Nothing has worked. Nothing makes sense.

However, we finally realized it is more of a control issue. I have taken him to a GI Dr. and a nutritionist trying to figure some things out but in the end we realize he wants to have control over something. Kind of like people with eating disorders. It isn't about the food, it is about control. Brendan needs assistance with everything and he can't do what he wants all the time because of all the assistance he requires. He also can't see his father as much this year due to starting middle school. He starts school an hour earlier which makes commuting to pick him up and bring him to school extremely early in the morning out of the question. His PASS worker of the past few years also stopped working with him due to furthering her career. He also had to attend a different summer school due to his age and found out he wouldn't see his father as much once he started middle school. I think there was just too much out of his control and he couldn't handle it. He has a hard time expressing his feelings which we are working on and this is what he chose to rebel against. Odd? Yes it is but we are trying our best to deal with the situation.
Recently we have made a breakthrough but it isn't over yet. He is beginning to use the bathroom and is having less accidents. He does get punished if he has an accident such as losing all electronics and he isn't allowed to go out and about with his new PASS worker. As soon as he chooses to use the bathroom he gets everything back and he is one happy boy. Slowly but surely we will overcome this bump in the road.

Even with all of this going on Brendan is STILL progressing. He still amazes me all the time. I still can't believe how proud I can feel of this child. The tiniest milestones are still appreciated beyond belief. His vocabulary is constantly improving. On a daily basis I can't believe what comes out of his mouth. He cracks me up. While his mobility is getting more difficult for him due to growth spurts and left hip issues (that is another whole blog entry) he is still impressing us. Last month we decided to see if he could get into his wheelchair on his own....from the couch! He crawled off the couch and across the room (army style) and climbed into his wheelchair completely on his own. We only gave him verbal cues. Who even knew he could do this? He loves our excitement and I am pretty sure he impresses himself. He loves knowing he can do things all on his own.

Yesterday was another WOW moment. I was changing his little brothers diaper and Brendan called me to use the bathroom (two WOW's in one!) and I could tell he really had to go so I told him to wheel into his bathroom and unbuckle and I would be there as soon as I changed Drew's diaper. Well after a quick change I ran to his bathroom and found him STANDING at his toilet holding onto his handicap bars!!!! He decided to get out of his wheelchair and just stand up and wait for me. He has never done this before and he had a huge smile on his face. AMAZING!!!! Now being 8 months pregnant this is totally awesome for me. No lifting required. Little achievements like this bring tears to my eyes.

So he can now self transfer into and out of his walker, get into his wheelchair on his own from the floor with verbal cues, and stand up at his toilet with zero help. He can also get into his wheelchair from a standing position with very little help. Now Dr. Park says he won't be able to walk on his own even after SDR but I seriously question that. He can't possibly know what my son is capable of doing from a 30 minute evaluation. If Brendan puts his mind to it he can do anything!

Sunday, November 9, 2014

Equipment Equipment Equipment

I am fully stocking his home therapy room. I have ordered a weight bench, air walker, a rower, trampoline and 3 different sized exercise balls. He already has a treadmill, stander, parallel bars, therapy bench and some balance balls. Once we get it all set up I would like to video before and after SDR to see how different he becomes. Since it will be the middle of winter here he needs everything possible at our house so he can work out no matter the weather. I am looking to hire a personal trainer for him 5 days a week for 6 months. Lets hope I find someone!

Brendan has been doing great with his new PASS worker. He has been walking a ton and is still able to bike ride on warm days. I am looking to get him a new accessible bike for Christmas. He has had the same bike since he was 3 years old and it has seen better days. He has definitely outgrown it as well. He loves to bike ride so I know he will get lots of use out of it over the next 6 years. He is still able to pedal himself since he had the PERCS procedure done years ago. It will be interesting to see how he does after SDR. I am looking at Freedom Concepts for his bike, they make amazing tricycles and they obviously last for years!

60 days left or less for my pregnancy. I am still able to lift Brendan this time when I have to which is awesome. I am getting very tired lately but overall it has been a fairly easy pregnancy. Girls are sooo much easier on my body than those boys! I have no idea why but after two boys and two girls I will say having girls is much more pleasant. We got to see our little Lily on 3D ultrasound last week. She looks just like her siblings already. I am definitely ready for this pregnancy to be over with but at the same time it is bittersweet because that means that Brendan will be having major surgery in 5 short weeks. I am not stressed at all YET but I am thinking I will be very nervous the entire month prior. I will just focus on all the success stories and why we are doing better his life! To make him more comfortable and to give him the chance to do more than he would ever be able to with all this spasticity!
Lily at 30 weeks gestation. Weighs 3lbs 13oz.

Monday, November 3, 2014


We have set up a fundraiser to help with Brendan's SDR surgery. I am planning on staying in St. Louis with him for 3 weeks with my newborn baby. This way he can receive amazing therapy and kick us off to a great start! I have ordered a ton of therapy/gym equipment for our house and am looking for a personal trainer for him. We received some terrible news at his SDR evaluation. His left hip is now out of place and it looks like he will need a left hip osteotomy. I am beyond upset about this and can only hope that SDR will help reduce the spasticity that is causing his left hip to pull out of the socket. I think I fear the hip surgery more than the SDR surgery.

Brendan has a new PASS worker. His prior one ended up working full time in her career and had a baby girl so she could no longer work with Brendan. He has adjusted very nicely and quickly especially after not having anyone for a few months. I am so grateful I found someone since being pregnant really hinders what I can do with him. He has gone on many bike rides and walks which is great for him. He has been putting away his own laundry and doing a few more chores. He requires so much assistance and I think every disabled child deserves their own personal PASS worker.

I am trying to come up with more fund raising ideas so if anyone has a good one please let me know. I am looking into candy bars or lollipops and possibly a father daughter dance.

Wednesday, October 22, 2014

Wow it has been a while!

I have not had the time to blog! We are expecting another little girl this January. She was an unexpected surprise. Life is always busy with 4 kids so I can not really imagine having 5 but we will make it work.

BIG NEWS: Brendan is having SDR, selective dorsal rhizotomy, this February. We decided to bite the bullet. Dr. TS Park in St. Louis Missouri is our surgeon. We flew out this month for his evaluation and to make sure he is still a candidate which he is. I am oddly excited. I am in the middle of buying everything he needs for the intense therapy he needs afterwards. I am thinking of hiring him a personal trainer, someone who can kick his butt into gear!! Poor kid :). His left hip now looks awful on the x rays and is 50% out of socket. This is horrible news. I absolutely hated the hip osteotomy surgery and now he needs it again. He will need hip surgery 6 months after SDR if his hip gets worse and if not we will wait at least one year. We need him to gain all the muscle mass he can so he won't regress too much after the hip surgery.

I have set up a go fund me account to help us get to and from St. Louis. It will be very expensive because I want to stay out there for 2 additional weeks for intense therapy. I want to start out on the right foot and get him motivated! I will be staying there for a total of 3 weeks with my newborn baby. I would like mother to join me and help out a little so I don't have to always drag the baby out in the dead of winter. I will post my link so you can read the full story.

Brendan has started Middle School this year and is doing well. Three schools were combined so he is meeting a lot of new people. They have 2 dances this year so my boy is growing up on us!! He now attends school with his step sister which is awesome. They went to different elementary's due to his disability.

The kids are all growing up so fast. My little guy is already 2 years old! This pregnancy is flying by as well but so far I am handling it pretty well and can still lift Brendan when I need to.

I will try and post more often especially documenting everything regarding his SDR surgery!

Here is his go fund me link which explains our visit in more detail and how we finally made the decision:

More about SDR:

Thursday, July 11, 2013

Why I can't be lazy

Brendan is content to sit in his wheelchair all day long. It is a fight when I even take him out for some floor play. He loves his chair and how can you blame him?! It is his independence. He can wheel around the entire first floor and do whatever he wants to do. The past two days I got a big reality check.

It all started because I decided to take him for a walk every day. Meaning get his lazy butt into his walker and walk down the street and back. It sounds simple but it is a LOT of work for this kid. He needs to build some muscles and I have been too lazy with him allowing him not to walk. It has been hard caring for a newborn but Drew is almost a year (ALREADY!)and it is time I learn how to do it all with all 4 kids. His PASS worker just had a baby so she is out for the summer. I am on my own with 4 kids and I have to be productive or we will all be sitting in the house all day. It won't be easy with a baby and a disabled child but I am determined to have a great summer.

My husband joined me on these walks and decided Brendan should transfer into his wheelchair from his walker all on his own and you know what? He did it! It took him a while. I actually had tears in my eyes watching him. This is huge. Self transfer is HUGE! Tonight we had him transfer into his walker from his chair and he did it and pretty damn quickly for his first time. Transferring and walking took over 30 minutes and then he was still able to get into his wheelchair on his own and in less than 2 minutes!

So I realized quickly that if I am not lazy who knows how far this child can go! He can do it. He is getting older and he is gaining muscle mass in those arms. He tells us when he is scared and we talk him through it. I am beyond proud and kicking myself in the a** a little for not pushing him more over the last year. Being pregnant didn't help since I was pretty useless but I am back to myself and ready to get this kid motivated!

Monday, April 29, 2013

Brendan continues to ride...tandem style!

Brendan LOVES riding his bike. He has outgrown it (he has had it since he was 3!) but they aren't exactly cheap so we keep using it. He has been able to pedal on his own since the PERCS surgery. I have been searching on line for a used one....craigslist, equipment exchange sites, etc. They are not easy to find especially the exact style we need. We need to be able to push, steer and brake for him when needed. I was not having any luck. They were either already sold or didn't have the parent handle. I was feeling discouraged and trying to figure out a way to make his current bike last longer.

On one random Saturday my husband stopped in a local bike shop (not your typical bike shop....a man and his brother have a hobby and work out of their mother's garage fixing and selling bikes)to ask a question about a bike he is trying to build. While talking to the gentleman my husband notices a tandem handicap accessible bike and why did he happen to notice this among a ton of bikes jammed into a garage? Because I JUST showed him one online whiling looking on the Freedom Concepts website. I was like OMG look at this bike. It is awesome. What are the chances?! Right in our own town there is a tandem bike perfect for our son...making family bike rides possible yet again. We couldn't believe it. So fast forward a few weeks and the bike is tuned up, rust is painted, handle bars re foamed and we own a GINORMOUS tandem style bike for $400! These bikes go for over $6800! My awesome husband rigged the pedals so he could reach them and off they went.

I didn't think Brendan would love the bike as much as he does. He kept saying he wanted to ride by himself but that child could not have a bigger smile on his face when he rides. My husband thinks he likes going fast! The thing is huge but really neat. I think it was meant to be and now this huge piece of machinery can ride on!
Do you think he likes it?

If you think your child could benefit from a bike check out is amazing how many you actually find on there. Try searching handicap accessible bike or trike, freedom concepts.... Also there is a great equipment exchange site (which is great for all kinds of equipment for our special needs kiddos), great place to buy or sell your equipment. You can also hold a fundraiser or contact your local Shriners who donate bikes. I highly recommend getting a bike. Brendan built calf muscle last summer, something I have never seen on him before and it gives him independence which he LOVES. It also allows them to be a kid which they need more than anything!